MY RECOVERY TIMELINE THROUGH ECZEMA AND TSW
Thank you for reading about my journey through eczema and Topical Steroid Withdrawal (TSW).
I’d like to give a special shout out to all the TSW warriors out there who are going through this simply awful experience and I sincerely hope you will read more about nutrition and detox on this website. You don’t have to just sit and wait for this painful process to complete on its own. Take charge of your health and give your body what it needs to support itself during this intense healing process.
For over 25 years, I was prescribed topical steroid creams to treat eczema on my hands. My eczema got worse over the years and I was prescribed stronger creams every time the old ones started to become less effective. Toward the end of 2014 it started to spread from my hands to my upper arms and toes. Looking back, I believe my skin had become addicted to the steroid creams. When I fortunately stumbled upon the concept of Topical Steroid Withdrawal on the internet in January 2015, I realized that my skin was craving the creams and that’s why the eczema was worsening. I knew I had to stop the steroid creams and I did – on February 8, 2015. Please note that I am not a doctor and do not recommend stopping any prescription medications without first consulting with a qualified doctor.
TIMELINE OF STEROID ADDICTION AND STEROID WITHDRAWAL
Here is a timeline of my experience. The eczema never went away during all these years prior to 2015. It was just “less bad” at times. By the way, I’m so thankful that I took the time to write my symptoms down every night before bed during my recovery from TSW. It enabled me to see patterns that I wouldn’t have otherwise noticed and it’s the only reason I have such a detailed account of my recovery.
Some of my steroid creams from over the years
PATH TO TOPICAL STEROID ADDICTION
Age 11 – Eczema started on one finger
Age 13 – Started using steroid creams on finger
Age 17 – 32 – Eczema spread to 2 fingers. Occasional flares on legs & scalp. Spot treated with steroid creams on a regular basis for the next 16 years.
Age 33 – Eczema spread to 5 fingers. Still occasional flares on scalp. Continued to spot treat on a regular (almost daily) basis. Dermatologists said not to worry about over using the creams since I had “severe eczema”.
Age 35 –Eczema spread to all 10 fingers and both palms. Diagnosed as “dishydrotic” eczema – meaning there were tiny blisters filled with serum right under the skin and they itched like CRAZY. Not a normal itch. The skin would crack and bleed easily. Oftentimes I couldn’t shake people’s hands and it led to many awkward moments. I couldn’t bathe my babies without being in pain. Washing my own hair was painful. When the blisters would start, the creams would help make them go away for a period of time, but always to return again. The general itchiness was constant.
Age 36 – I tried a new dermatologist and he prescribed a daily low dose antibiotic and a stronger steroid cream. I took the antibiotic for most of this year which may have contributed to my Small Intestine Bacterial Overgrowth (SIBO). Despite the prescribed antibiotic and stronger steroid creams, the eczema on my hands did not improve at all and it even started to spread to my upper arms toward the end of the year.
Age 37 – The eczema “blisters” started to form on my toes for the first time ever. I went back to the dermatologist and told him that his protocol was not working and that my eczema was getting worse. He said we just didn’t find the right antibiotic match for the bacteria on my skin and he prescribed a different antibiotic. He also gave me a stronger steroid cream AND a steroid injection. This was my first and last injection and I regretted it almost immediately. I just had that gut feeling that this was bad news and I should have listened to my intuition. But it did spur me to do a TON of research on eczema and steroids and I eventually ended up on ITSAN.org where I realized that I was possibly addicted to topical steroid creams and that this addiction was now causing the eczema. In fact I believe I didn’t have true eczema anymore — I had steroid induced eczema.
I realized that I had to quit the steroids and would possibly go through Topical Steroid Withdrawal (TSW), also known as Red Skin Syndrome. From my research, I learned this would likely be a one to three year period where my skin would be red, inflamed, oozing, painful, swollen, and that it could get so bad that I might need to quit my job and spend my days laying in bed in agony and spending hours in the bathtub to try to get small periods of relief. Needless to say, I was absolutely terrified. Read the stories on ITSAN.org and you’ll understand why.
And then please read my TSW timeline below to see how I avoided the worst of the worst during this withdrawal by finding Functional Medicine, eating a non-inflammatory diet, and supporting my body through this intense healing process.
JOURNEY THROUGH TOPICAL STEROID WITHDRAWAL
February 8, 2015 – I stopped using topical steroid creams cold turkey (after 25 years of near constant use on hands and occasional use on scalp and very occasionally on small areas of arms/legs). I also stopped the daily low dose antibiotic. I also began recording my symptoms each day since I knew this would be a long journey and I wanted to keep track of everything. Please note that I am not a doctor and do not recommend stopping any prescription medication without first consulting with a qualified doctor.
Month 1 of TSW
- Month 1, Weeks 1-2 – Nothing new. Hands still itchy with cracked skin, as usual.
- Month 1, Week 3 – My cheeks and eyelids started to sting when I put on my daily moisturizer that I had used for years. (Note – I had never used steroids on my face)
- Month 1, Week 4 – My cheeks and eyelids became very tight, dry, scaly, rough, and painful. I could no longer wear make-up because it would start to “cake” right away from the dry, rough skin. Hands started to itch very badly and more tiny blisters formed on my fingers and palms. Tiny bumps (not blisters) started appearing on the tops of my hands, and the top of my right hand turned bright red (classic Red Skin Syndrome, which is synonymous with Topical Steroid Withdrawal). The top of my hands didn’t itch (yet) but they were shockingly bright red.
Month 2 of TSW
- Month 2, Week 1 – Fingers swelled to be very large with lots of blisters. Extremely itchy and lots of oozing. This lasted about 1 week and then the blisters started to dry out and the swelling started to go down, over the course of the next 1-2 weeks. Then the dried blisters went through a scaly phase where the skin would shed and new skin would be underneath. (Note – for the first few months, a new “Flare” would start immediately after the old flare would dry up and flake off and this was a continual cycle, with each cycle lasting about 3 weeks from start (oozing/swelling/cracking) to finish (eventual peeling of the dried up blisters)).
- Month 2, Week 2 – My left elbow was swollen, hot, and painful when I woke up one morning. I thought it was an infection and went to the neighborhood 24-hour clinic and they said it was infected bursitis and gave me an antibiotic. The swelling and pain went away after a few days. [Note: As you read on, you’ll see that this was actually due to inflammation, not an infection. Steroid creams suppress your immune system and therefore I had been suppressing my immune system for 25 years. Now that I was off the creams, my immune system was “waking up” and learning how to be an immune system again. This takes time and the immune system will “misfire” and cause inflammation in your body until it figures things out.]
- Month 2, Week 3 – Saw a naturopath and started an anti-inflammatory diet per her recommendation. No gluten, grains, dairy, or added sugars.
- Month 2, Week 4 – Palms felt pretty smooth and not itchy so I saw a bit of improvement from the eczema I had for so many years. My fingers were still very dry but not itchy. Tops of hands that had turned bright red a few weeks earlier were now itchy and the skin there felt very rough and dry. I started to get some itchy bumps on one side of my neck.
Month 3 of TSW
- Month 3, Week 1 – Itchy bumps started to spread to more parts of my neck. Tops of hands became even more red and more itchy. My back stated to hurt whenever I laughed and whenever I laid down. [Note: The back pain only lasted for a few days – but looking back this was likely a detox reaction from cleaning up my diet.]
- Month 3, Week 2 – New flare started on hands. Blisters formed and became extremely itchy and hands and fingers became swollen and ooze started. Itchy bumps on neck started to spread down to collar bone and upper chest. My elbow became swollen and painful again. I went to an internist and he put a needle in the swollen elbow to try to pull fluid out to test it for MRSA, but there was no fluid in there. He said this must be a serious infection since it came back after the first round of antibiotics and therefore he prescribed me a stronger antibiotic this time. I was getting scared at this point so I made an appointment with an orthopedic surgeon for the following day. The orthopedic took an x-ray of the elbow and said everything looked fine, but that this must be a serious infection and we needed to get rid of it before it got into the bone or spread throughout the body. At this point I was REALLY scared. He prescribed a third round of antibiotics and told me to take it along with the other antibiotic that the internist had prescribed the day before. [Side note – I told both these doctors that I was withdrawing from topical steroids and thought maybe this elbow was somehow related, and they simply told me that eczema can’t be cured and I just needed to start the creams again.]
- Month 3, Week 3 – My neck started to get better. I had been eating a non- inflammatory diet for exactly one month and toward the end of this week I went out of town and got off my diet for 6 days. I ate gluten, dairy, sugars, etc. As Julia Roberts said in Pretty Woman, “BIG MISTAKE. HUGE!”
- Month 3, Week 4 – Within 3 days of “cheating” on my diet, the rash on my neck turned ANGRY, RED, and started spreading to my entire neck (it was only on about 50% of my neck previously). Instead of small dry bumps it now looked like red, thick gooseflesh. It was an itch like I’ve never before experienced and I couldn’t stop clawing at it. Night time was the worst and I would claw at it in my sleep and it would keep me awake. I would wake up with blood on my pillow and sheets. At this same time, the worst flare yet began on my hands and fingers. My belly and legs started itching all over and I decided to go back on the anti-inflammatory diet.
The rash spread to my neck
Month 4 of TSW
- Month 4, Week 1 – My fingers were so swollen that I couldn’t make a fist. They were cracking, oozing, and terribly itchy. I was soaking my hands daily in domeboro solution to try to get some relief. It helped the cracks heal a bit faster, but overall I was in a ton of pain and my hands looked and felt worse than ever. My husband had to wash my hair in the sink for the next month because it was far too painful for me to do it. I almost had my wedding ring cut off because it was stuck on my swollen and inflamed fingers and I was worried it would cut off circulation.
A close up of my fingers at Month 4
Elephant skin is a common side effect during TSW
I started to get elephant skin on my neck. When I turned my head, it looked like I had rolls of excess skin. [Side note: “Elephant skin” is a common side effect of TSW and does eventually go away. The elephant skin on my neck only lasted 1-2 months. The elephant skin on my fingers and knuckles took much longer and is still on my knuckles.]
I started to get folliculitis on my legs this week (which is one of the side effects of TSW for some people according to ITSAN.org). About 20 “infected hair follicles” showed up on my legs almost overnight. They were itchy and a little painful. They had a puss top and would leave a purple scar once they eventually went down. Each bump lasted for a few days and I would get a few new bumps each day. [Side note: This lasted for about 1 month, and then the bumps were less numerous (maybe 6-8 at any given time) for another 2 months. After that, the bumps came only occasionally and when they did, they were much smaller, typically did not have a puss top, and were less inflamed. Even after a year into TSW I would get an occasional 1-2 bumps but they rarely had a puss top. They were just itchy little bumps and went away after about 2 days.]
THIS IS WHEN I WAS INTRODUCED TO FUNCTIONAL MEDICINE. This changed my life and greatly sped up my recovery from TSW. Read on to learn more about the protocol Dr. Erin recommended to support my body during this intense healing process. It involved detoxing through lymphatic massage and ionic foot baths, eating a non-inflammatory diet, and taking numerous supplements to address the imbalances in my functional blood work labs.
- Month 4, Week 2 – Elephant skin spread a bit to my cheeks and to the outside of my eyes. The tops of my hands were rough like sandpaper and the bright red color would come and go daily. The bright red color was also spreading to my wrists. I started to occasionally get sudden nerve pain in my neck (“zingers”). The folliculitis spread to my belly. My face started to get very tight and itchy and had white flakes all over it. My ears turned bright red and were itchy and scaly. I got the blood work back from my initial visit with Dr. Erin and this week I started the supplements that she recommended. Essentially, my immune system was shot (compound by years of steroid use) and my estrogen levels were dangerously high (possibly a result of long term steroid use). My iron and Vitamin D levels were too low. The supplements were addressing all of these issues and for the first time I finally began supporting my body as my body was trying so hard to heal itself. Our bodies are designed to heal themselves and they are ALWAYS working on doing this. When we support our bodies (through diet, detox, exercise) then it speeds up our healing immensely. This is so important that I want to say it again. WHEN WE SUPPORT OUR BODIES (through diet, detox, exercise) THEN IT SPEEDS UP OUR HEALING IMMENSELY!!!
- Month 4, Week 3 – The glands in my neck became swollen and remained for several weeks. This is another classic symptom of TSW according to ITSAN.org. My hands and neck were very itchy all week. My fingers were swollen and it was hard to fully straighten them. I did my first ionic foot bath this week. Dr. Erin prescribed two foot baths a week for the first three months to help my body detox all of the many toxins it was dealing with. My foot baths were black for the first 2-3 months and I couldn’t see my feet at the end of each 23 minute procedure. The water was black with all of the toxins.
First Ionic Foot Bath
Ionic Foot Bath 8 Months Later
- Month 4, Week 4 – Another flare started this week. But on the bright side, the flares seemed to be shortening in length. Early on it was about 2-3 weeks from start (swollen, oozing, cracking fingers) to finish (peeling of dried blisters). Although the new flares still begin immediately after the old flare peels off, the flares are beginning to shorten in length (about 5-7 days now).
So there is about one flare per week now. I did my first lymphatic massage this week. Dr. Erin prescribed 2 lymph massages per week for the first 3 months (along with the 2 ionic foot baths per week). Both of these were prescribed to assist my body though the major detox it was going through. [Note: I believe that Topical Steroid Withdrawal is one enormous, full-body detox effort. Steroids suppress the immune system (which is why they typically work in calming a skin rash which is an immune response), and when someone stops using steroids after long term use, the immune system is finally allowed to “wake up” and it goes to work on cleaning up the many pathogens and toxins that had been allowed to accumulate in the body. The effort overwhelms the body’s detox pathways, and the skin, being the largest detox organ in the body, takes the brunt of it. None of this is formally proven – it’s my two cents. I firmly believe that the people who experience full body TSW and 1- 3 years of itchy, red, angry, swollen skin can shorten this agony greatly by 1) Eating a non-inflammatory diet and 2) Assisting their body through the detox process via foot baths, lymphatic massage, and many other detoxing activities. TSW warriors, I have so much love and compassion for you. And that is why I ask you to please assist your bodies in this detox!!! It is a lot for your body to do alone. Please contact me if you want to do this and don’t know where to start.]
This week I started drinking a green smoothie every day. It is such an easy and yummy way to get in the daily greens that your body so badly needs, especially while your body it is working so hard to heal from so many years of steroid use. [Side note: I LOVE my daily smoothies and simply cannot live without them. During my recovery I drank a smoothie every morning with breakfast and every evening with dinner. I typically fill them with spinach, kale, banana, cucumber, frozen blueberries, frozen pineapple, and a big tablespoon of coconut oil. Soooo healthy! I make a 64 oz smoothie in my Vitamix and store the leftovers in glass mason jars and therefore I always have green smoothies on hand for me and for the kids.]
Month 5 of TSW
- Month 5, Week 1 –
Right hand at Month 5 of TSW
Had two days this week when I wasn’t itchy and my hands were not swollen or oozing or peeling. WOW!! But then another flare started. Also during this time my hands were not bright red and my neck was a bit pink but not red like before.When this week’s flare started, I noticed fewer blisters on my swollen fingers. My fingers were still itchy though and the flare dried up and peeled off toward the end of the week. The skin on my face finally stopped flaking (after many weeks) but the skin under my cheeks seemed very loose and resembled elephant skin. I saw elephant skin forming at my inner elbows, wrists, and knuckles. The elephant skin that had been on my neck for many weeks was still there but instead of looking like thick gooseflesh it now started to feel almost paper thin. I still had folliculitis on my legs, but the bumps were less swollen and new ones started showing up less frequently. I started to experience “urgent urination” this week, which just means that when I noticed I needed to go to the bathroom, I REALLY had to go and could barely hold it. There was no warning sign that I might need to pee soon. Nope, it went from 0 to 60 in no time flat and I found myself running for the bathroom on many occasions. This too was a sign of our old friend that we know as inflammation. [Side note: This lovely symptom lasted about 3-4 weeks.] My hands started to tingle whenever they were hanging down at my sides. I think the increased blood flow was causing this. Steroids constrict your blood vessels and I think at this point my blood vessels were starting to open up again. Strangely, the veins in my arms started to look very pronounced whenever this happened.
- Month 5, Week 2 – A slight rash started on my upper arms and forearms this week. It was red and splotchy and a little bumpy. My neck was noticeably less itchy this week and my face started to feel very smooth for the first time in months. This is the first week I didn’t have a full flare on my hands/fingers with blisters. My fingers were itchy, dry, and cracking, but no blisters this time. Nice! But feelings of urgent urination continued. My close friends started approaching me and telling me that I looked very sick and they were worried about me. And I did look terrible. My complexion was very sallow and I was getting too thin. In hindsight, I now know that this was from the detoxing (foot baths, lymph massages, supplements). When you go through an intense detox, the toxins that had been stored in your body and in your fat are released into your bloodstream as they prepare to exit your body. While the toxins are in your bloodstream, they make you look and feel sicker. Most people who go through a detox experience 1-2 weeks of feeling bad until the toxins are all out. Those of us with TSW are on a completely different level, though. We have so many toxins in our body that it takes much longer to detox them out. (And remember – your skin is your largest detox organ!). So during this time our skin looks terrible, our bodies (joints and skin) can become inflamed, and we look and feel awful for a period time. Friends – this is the detox process at its finest. And this is another reason to support your body through this process by assisting it in the detox effort. Your recovery will be much easier and much faster. Don’t wait for time to take its course!!! Time will work….but why spend 1-3 years in this agony? There is a different way.
- Month 5, Week 3 – I had been very tired lately. Detoxing is hard work!! Your body actually is working quite hard during an intense detox. My hands were less red this week. Feelings of urgent urination continued. Another week with no itchy blisters on my fingers!! They were still very itchy and dry/cracked but the lack of the oozing blisters was very much appreciated. I still had folliculitis on my legs but the bumps appeared to be less swollen lately.
- Month 5, Week 4 – I had a small flare on my fingers with blisters, but this flare lasted only a few days (complete with itchy, swollen fingers and oozing) and then dried and peeled off. My wrist became swollen and sore for a few days this week. Just like with my elbow months earlier, this was a sign of inflammation as my immune system was learning how to be an immune system again. Some mis-firings are bound to happen during this process. Feelings of urgent urination continued this week.
Month 6 of TSW
- Month 6, Week 1 – My energy level was noticeably better this week. My neck was not red at all and did not itch. And the feelings of urgent urination were gone! Most of the folliculitis bumps on my legs had dried up and new ones were coming only occasionally and were not as swollen as before. My fingers were very dry this week and the dry/dead skin was peeling off in large chunks.
- Month 6, Week 2 – I think I turned a corner!! My energy was up this week and I even had a burning desire to exercise. My left hand seemed to be improving a bit more than the right hand and the elephant skin on the left knuckles was reducing. Hands were itchy this week but no major swelling or cracking. And since we are friends by now I feel comfortable telling you that my bowel movements are no longer smelly!! Wow, aren’t they supposed to be smelly? Doesn’t everyone’s sh*t stink?? I always thought so (partially because I live with my husband and there definitely ain’t no roses in there.) But, I now know that it really isn’t supposed to stink. In a healthy digestive system, you should poo 1-3 times per day and it should be fairly effortless and should not be too smelly. Once I started the detox with Dr. Erin almost two months earlier, I started poo’ing 3-4 times per day. That’s another sign of a good detox. In the beginning you will poo A LOT and it definitely won’t smell like roses. But those toxins have to leave your body somehow and there are only a few exit channels from your body (urine, bowels, and your skin). I read somewhere that during a detox you can shed several pounds of old fecal matter that has just been “hanging out” in your intestines. So, by this week in my TSW recovery, I was poo’ing 2-3 times a day and it was all roses (well, you know….).
- Month 6, Week 3 – Well, I started to feel tired again this week. Two steps forward, one step back. My fingers were dry and itchy and cracking (but I hadn’t seen the blisters and oozing for a few weeks!!). Also, I started to gain back some weight which was awesome as I was getting sickly thin. [Note: Much of the reason for the low weight was SIBO (small intestine bacterial overgrowth) and not the steroid withdrawals. People with SIBO do not absorb all the nutrients from the foods they eat. I had taken antibiotics many times in recent years, and antibiotics are one of the contributing factors to SIBO. My 2014 dermatologist had me on a daily low dose antibiotic to help fight eczema. No bueno.]
- Month 6, Week 4 – My fingers were really itchy this week. The skin on my hands lately has been very dry and flakey and it looks like dandruff when I scratch it. My right ear turned bright red and became very itchy this week.
Month 7 of TSW
- Month 7, Week 1 – I started to get itchy bumps on my inner elbows and forearms this week. Also started to look like elephant skin on my inner elbows. But all of this only lasted for 1-2 weeks and then went away.
- Month 7, Week 2 – Real roller coaster this week. I would feel good for a few days, then dizzy for a few days, then weak and cranky for a few days and had a headache. My left hand continued to improve and I could straighten all the fingers on that hand with absolutely no feelings of tightness, so the swelling was gone. The right hand fingers were still a bit swollen. Both hands were still itchy.
- Month 7, Week 3 – Had another flare on my hands/fingers. No oozing thankfully, but they got swollen, itchy, and started cracking. My left ear lobe became red, itchy, and felt hot. My neck and head felt tight and stiff and I had a constant headache. I noticed that I started losing more hair in the shower this week. [Side note: This lasted for several months. I was never at risk of going bald, but it was the same large amount of hair loss that I experienced during my pregnancies. This is also a common symptom of TSW according to ITSAN.org.]
- Month 7, Week 4 – My neck was very sore and it hurt to look up and it even hurt my neck every time I swallowed. The skin on my neck was fine, but my neck itself was sore. Both ear lobes were swollen, red and very itchy. Fingers were itchy but didn’t flare this week.
Month 8 of TSW
- Month 8, Week 1 – The swelling on my ears went down and now the skin was scaling and flaking off. My neck was no longer sore. At this point I was still getting about 5-10 new leg bumps (folliculitis) each week (but better than each day!). And the leg bumps were much smaller and lasted only 1-2 days and did not have a puss top like before.
- Month 8, Week 2 – I vacationed in Colorado this week and my skin was fairly clear and not too itchy when I arrived. But on the 4 th day I developed an itchy rash on my stomach and my fingers became swollen and my thighs started itching. I also started to get more folliculitis bumps on my legs. I’m guessing the sudden weather change (from Texas to Colorado) made my skin react and just the overall dryness of Colorado probably contributed greatly.
- Month 8, Week 3 – I returned to Texas this week and the swelling in my fingers went down within 24 hours and the stomach rash went away. My fingers started peeling toward the end of the week. I had about 15 folliculitis bumps on my legs from the past few days and many had a puss top and were itchy. Also my neck became very sore and hurt whenever I looked to the left (not a skin issue but a muscle/inflammation issue). The soreness lasted for about a week.
- Month 8, Week 4 – The fingers on my right hand swelled this week but not on the left. But no blisters or oozing. I had 2 migraines this week (I usually get one every 4-5 months). I got a compliment this week!!! I have to stress this because I have been looking quite terrible these last few months because of the major detox and the worst of it was now over. A friend told me, “Your skin is glowing and your eyes look really green today.” I almost kissed her. Seriously. On the mouth. Also, for the first time in over 3 months the water in my ionic foot bath looked better and I could actually see my feet!! Real proof that the major part of the detox was over for me!! [Side Note: I had been doing 2 ionic foot baths and 2 lymphatic massages every week for the past 3 months to assist in this detox].
Month 9 of TSW
- Month 9, Week 1 – At church this week one of our guy friends told my husband that I’m looking better. YAY! Another compliment! The next day, a guy at work said to me, “I don’t know what you’re doing, but it’s working. Keep it up.” Woo-hoo!!! This week I could just tell that the inflammation in my body was suddenly decreased. My hands were better and not itchy, not swollen, and the only lingering issue with them was that they were u.g.l.y. and had elephant skin on the knuckles. The leg bumps were almost all gone. Then toward the end of the week my ear lobes became itchy and swollen and my legs became very itchy. Like I said, two steps forward, one step back.
- Month 9, Week 2 – My legs and ear lobes were extremely itchy this week and I had another migraine.
- Month 9, Week 3 – Fingers were a little itchy this week but not swollen or cracking. Just generally dry. My lower back and my neck became sore again and lasted for 3 weeks (inflammation).
- Month 9, Week 4 – Lower back and neck were still sore this week. My lips became very chapped for the first time. Hands were dry but felt very smooth. I had soft bowels this week and pimples on my forehead (my body was probably going through another detox phase).
Month 10 of TSW
- Month 10, Week 1 – Lower back and neck were still sore this week. I had soft bowels and forehead pimples again this week. Hands felt pretty good but they looked dry, white, and scaly.
- Month 10, Week 2 – Back and neck pain went away. Lips were still chapped. Fingers and ear lobes starting itching toward the end of the week.
- Month 10, Week 3 – Hands felt pretty good this week and not too itchy overall. Had some stomach aches and loose bowels. Had a strong sensation of blood flowing into my hands every time my hands were down by my side.
- Month 10, Week 4 – Fingers were swollen this week and it was hard to straighten them. But still no blisters or oozing, thankfully. They did have a few cracks in them that bled and itched. I noticed that I wasn’t losing as much hair in the shower anymore (after about 3 months of losing lots of hair during each shower).
Month 11 of TSW
- Month 11, Week 1 – Hands were better this week.
- Month 11, Week 2 – My body was very itchy this week (legs, arms, hands), especially when I was in the shower. But no swelling or oozing or cracking. Just a really annoying itch.
- Month 11, Week 3 – I was sick this week with laryngitis, a sore throat, and a cough. I got about 15 leg bumps (folliculitis) and several had a puss top. Overall my immune system was down from being sick and that always affects my skin. My hands were very itchy. I started using essential oils this week for the first time and fell in love with them immediately! My kids had the same junk that I had and I was diffusing Thieves (essential oils) all week and using several other oils and I think it helped all of us recover more quickly. [Side note: I don’t recommend using essential oils topically on the skin during the worst stages of TSW. Only diffuse them during this time. For topical use, wait until your skin is healthier and can handle the potency of these natural but intense oils. At this point my skin was healthy enough to benefit from the oils.]
- Month 11, Week 4 – My legs were a little itchy this week. Most of the leg bumps were gone from last week though. My hands were not at all swollen and they actually felt pretty smooth! Still had elephant skin on my knuckles.
Month 12 of TSW
- Month 12, Week 1 – I was slightly itchy all over this week but it wasn’t too terrible. Got a couple new leg bumps with a puss top. But hands felt good early on and then fingers swelled a little toward the end of the week.
- Month 12, Week 2 – Body and legs still a bit itchy this week but overall not too bad. However, I flew to El Paso toward the end of the week and my fingers became very swollen within hours of arriving. It was either the sudden change to very dry weather or it was being in a house full of second hand smoke (or a combination of both).
- Month 12, Week 3 – Returned home from El Paso and was still a bit itchy all over. Toward the end of the week my fingers became very swollen and tight (hard to straighten my fingers) and felt extremely dry and itchy. I had about 10 new leg bumps over night, some with a puss top.
- Month 12, Week 4 – Leg bumps went down but legs were still a little itchy all over. Had a big pitch at work this week so felt a bit stressed and had a migraine one day. This week I started drinking bone broth (made my own in the Instant Pot – an electric pressure cooker that I cannot live without!!). Bone broth is extremely healthy and healing to the gut. Most of us with eczema (heck, most people in America regardless of eczema!) have an unhealthy gut and could benefit from drinking bone broth regularly. But that’s a different soap box….. I also started yoga this week. L.O.V.E. I.T. [Side note: I did a 4- week Beginner I series, followed by a 4-week Beginner II series, and now I’m an addict. Yoga is extremely healthy for the mind, body, and spirit.]
Month 13 of TSW
- Month 13 – Body was generally itchy this month but I really only noticed it first thing in the morning and at night when I took a shower. Every once in a while my fingers would swell slightly and get extra itchy, but it only lasted about 2 days each time. Afterwards it would crack and bleed slightly and then dry up, peel off, and become smooth again (still very dry – but at least felt smooth to the touch). Had a few leg bumps (folliculitis) this month but they were very small, flat (not swollen), and did not have a puss top. They went away after 1-2 days each time.
Hand at Month 13
Month 14 of TSW
- Month 14 – Early in the month my palms became very dry and there were a few tiny blisters under the skin (similar to the ones in the beginning of TSW) but they weren’t as bad and were short lived. My legs and belly had a general itchiness this month but only really bothered me first thing in the morning and at night when I showered. Toward the end of the month I got a bad cold and slight fever and the leg bumps showed up again….about 15 of them. They tend to make an appearance whenever my immune system is more run down. My right ear lobe became itchy and swollen at the same time but only lasted 2-3 days. I started daily dry skin brushing this month as a way to detox on a regular basis (and to save the cost of getting regular lymphatic massages). [Side note: Early in TSW my skin would never have been able to handle the rough bristles of the brush but at this point my skin is generally pretty healthy, though dry. I suspect the dry skin brushing will help with this. It not only exfoliates the skin, but it gets the lymph fluid moving which helps you detox. Your skin is your largest elimination organ and toxins leave through your skin, so exfoliating is important and so is stimulating the lymph.]
Month 15 of TSW
- Month 15 – Still a bit itchy in the shower but not too itchy throughout the day. My skin is pretty clear and I’m planning on some fun in the pool this summer! It’s been a very long time since I’ve been able to do that!
I know this was a lot of detail, but I hope it provided some encouragement for my TSW friends who are in the worst part of their recovery. This too shall pass.
Please contact me if I can be of help to you in your journey.
Hi Heather,
I was just wondering did you experience elephant skin and or prominent thickened fine lines on your hands at any stage and if so did you find anything helped? Is it all gone now?
Hi TS. I had a bit of loose and stretchy skin on my neck … not really elephant skin though. That improved after a few months. I still have some excess skin on a few of the knuckles on my hands. Not really a problem, though my hands make me look older than I really am. Good luck to you…. xo
Hi Heather
I was very interested in reading your journey through TSW. I’m currently in my 3rd month and it’s so awful, made worse I think by the lack of acknowledgment and understanding in the medical community and society as a whole.
I’ve had eczema since birth and at the age of 10 my mum made the decision to take me off steroids (I was by that stage on very potent steroids) she used homeopathic creams and oral powders to help me withdrawl.
I was off school for 5 months, had secondary infections and lost my eyebrows as well as no sleep for months due to the agony I was experiencing. I fully recovered and had no eczema for about 15 years but it slowly stared to creep back in my late 20s and was very bad when I was pregnant. Over the years (I’m now nearly 50) I’ve used steroid cream as and when I needed it but more and more needed stronger creams and use increased to daily over this past year.
I’m very angry at myself for becoming complacent about over use and to be back to this point when I was well aware of the dangers.
I also didn’t pick up on the signs that I was nearing TSA-like eczema appearing on my face when I wasn’t using steroids-Please note I’ve never had it on my face or used steroids on my face.
I now have it all over my forehead and neck and my hand and arms are bright red and worse are the horrible elephant skin. It’s so horrible to look at and very depressing.
Lucky people with perfect skin just don’t realise what an affliction this can be.
I was wondering what a daily meal plan looks like in terms of your anti inflammatory diet. Citrus is a trigger for me and I have a nut allergy.
Many thanks, Elle
Hi Elle. I’m so sorry you’ve been struggling with eczema and steroids for so long. Wow, your mom was certainly ahead of her time to know what she did back then. My first piece of advice for you is not to be angry at yourself! The last person to be blamed in all of this is you. Holding yourself with love and compassion during this intense process is so important. You deserve that compassion. None of this is your fault. I’m so glad you’re interested in exploring an anti-inflammatory diet! I’ll send you an email with a daily meal plan that may help make this easier for you. xo
Hello there! I have been dealing with a mild case of folliculitis and I am half way through month 3 of my withdrawal. I just went through a week of 4 antibiotic pills per day and it cleared a lot of it. But 2 days after it came back. I am going to see my doctor about it and hopefully get a culture swab done. I would love to hear your experience with folliculitus and how you ultimately got rid of it. ?
Hanna, so sorry you’re experiencing folliculitis. Not fun. I found that the more I detoxed from the inside, the sooner the folliculitis went away. I believe it’s a sign of toxins trying to leave the body. I detoxed through clean diet, ionic foot baths, and lymphatic massages. You could also do epsom salt baths to help detox and possibly make the existing sores heal sooner. Even though the spots turned dark purple for me after they healed, the scars only lasted a few months and then went away. Sending you love and healing wishes.
Hi,
I have TSW around my eyes. I stopped using it in May. And ever since I have folliculitis… I am just wondering if using hydrocortisone around my eyes for 3 years also affected my whole body? I get getting more and more bumps and it’s super depressing. My legs are filled with dark spots now and more keep coming. Have your scars faded and is there anything I can do to help speed this process? My eye area has improved a lot and my eczema seems OK for the first time in a long time. But now I have folliculitis. It’s always something 🙁
Hi Kayla. Ugh … the folliculitis. I’m sorry you’re also experiencing that. I had it on my legs and stomach during TSW. I believe that it is a symptom of detox. I am not a doctor but am happy to share my personal thoughts on this – please take this purely as information and not medical advice. I believe the steroids suppress the immune system and therefore allow bacteria and viruses to remain in the body when a normal immune system would be fighting them. And then when we stop the creams, the immune system “wakes up” and has lots of backlog to get to when it comes to chasing down pathogens and detoxing the body. I believe TSW is a major detox event that overwhelms the body’s primary detox pathways (liver and kidneys) and therefore the body recruits the secondary detox organs to help with the load (the secondary detox organs are skin, lung, sinuses). Assuming all this is correct, I believe one of the most helpful approaches would be to assist the body in its detox efforts (test your glutathione levels and possibly supplement with that based on discussion with your doctor, maybe increase antioxidants, a clean organic diet also reduces toxic load, watch for toxic ingredients in any lotions or makeup that you put on your skin (I use pure oils only for moisturizing .. like jojoba or sweet almond oil). My scars did go away from the folliculitis. I can’t remember how long it took – maybe several months. Prior to that they were a dark purple color. Sending you healing wishes and comfort as your body goes through this intense cleaning and rebalancing effort. xo
Thank you so much for this information, Heather! This makes a lot of sense to what is happening with my body since. It was very discouraging the past month. But this has been very comforting to know that the scars will eventually go away, I just need to be patient. Mine are also a fake purple colour. I ordered some jojoba oil 🙂 thanks again
beside doing the detox foot baths, detox massages, and eating an anti inflammatory diet. What other things did you put on your body or do for your body to relieve the symptoms of TSW? Any creams, ointments, body baths, what supplements? Daily body care routine?
Hi Maria. I used only pure oils on my skin for moisturizing. Usually sweet almond oil or jojoba oil and sometimes coconut oil (though that was super greasy). I threw out all my lotions….even the ones that said “for sensitive skin” … because I started reading ingredients and most have a bunch of chemicals and preservatives. When my hands got super cracked and painful I would soak them in domeboro solution and that provided relief. However, knowing what I know now about heavy metals and toxins, I probably wouldn’t use that again since it has aluminum in it. But it did provide relief when I needed it.
Also, when I got my lab work back from the functional medicine doctor I saw that I was very low in Vitamin D and iron. Also, my hormones were all out of whack. Steroids are hormones so starting/stopping them can have an impact on our other hormones (testosterone, progesterone, and estrogen). I believe the supplements I took for Vitamin D and hormones were helpful in my recovery. I hope some of this is helpful. xo
Hi there! After weeks of searching the internet for”TSW stages” I finally found your story! I am about a month and a half into my own TSW and developed similar symptoms that you had described in the beginning, arms and wrists were hot and red within the first few weeks, then became aggravated and regenerated skin, and then my neck became similar story. Both of my eyes became red, itchy and dry and my skin in general just seems to keep going through this irritation and regeneration phase and I was looking for someone or something that could provide me with a what a “final stage” or “nearing the final stage” looked like!
I’m currently working with a nutritionist to develop a diet around my food sensitivities and I’m hoping a more refined diet will speed things along! In addition to the diet, I also participated in the Medical Medium’s “9-day Liver Detox” (I could only do the 6 days because of the weight I was losing, but I have since incorporated drinking a glass of celery juice every morning/every-other.
After going through your monthly documentation of your eczema/TSW stages, I was wondering, at this point in time are you fully healed or do you still have spots of eczema? Thank you for your post! I hope to develop the courage to do the same on my blog with my own journey.
Hi Casey! Thanks so much for your comment and I’m so happy that you’re working on diet and nutrition and detox! I hope you see reduced inflammation from that soon. At this point I no longer have any spots of eczema. Sometimes my fingers will get itchy and that’s my sign that I need to increase my self care. Maybe I’m not getting enough sleep or I’m stressed or something like that. I’ve gotten much more in tune with my body through this experience and now I appreciate the “warning signs” like that from my body because it shows me I need to course correct. A few years after my recovery I randomly ended up with dry and itchy eyelids and eyebrows out of the blue for a few months but it wasn’t terrible and eventually went away. I never had it on my eyelids before so that was new and out of the blue. The skin on my knuckles still looks a bit thick … almost like elephant skin … but I can live with that. It makes me look older than I am because my fingers are a bit wrinkly. You didn’t mention stress management activities in your comment. I would just add some time of mind/body work if you’re not doing it already (meditations, visualizations, nature walks, grounding, etc.). My best to you in your recovery!
Hey there,
Amazing story I am currently on week 3 of my TSW journey and seeing this has made me feel a lot better as I feel like there’s others out there that truly understand. I am wondering if you took any antihistamines during your recovery?
Hi Arman. I’m glad my story was helpful for you. I never took any antihistamines during my recovery. Changing my diet to an anti-inflammatory diet I believe helped naturally lower my histamine and immune responses. Wishing you all the best in your recovery. Here is my blog post on healing foods during TSW in case this is helpful. http://www.myhealthtorch.com/2016/10/06/healing-foods-during-topical-steroid-withdrawal/
Hi Heather,
Thanks for getting back to me. That sounds great, I think I should stop taking them now as well. Thanks I will give it a read.
Just another question, did you ever have to deal with eczema smelling bad? Only as of the last couple days did I notice it is starting to smell strange.
Hi Arman. I never noticed a strange smell. Maybe check for infection?
Hi Heather,
I came across your article while looking up TSW. I’m 32 and have never had eczema, but when I went to the doctor for a rash in January of this year he gave me Viaderm KC, which was a steroid, antibiotic and antifungal. Afterwards I got a few more rashes when others would go away. For 3 and a half months I was using it almost everyday, not understanding the side affects whatsoever (other than it could thin your skin). I started reading more about topical steroids and the path it leads to. I’ve always believed in doing things more naturally, so I’ve refused to take the stronger steroid for the only remaining rash that wasn’t going away last week ( prescribed by my doctor). And now 7 days later I’ve broken out in a bunch of small localized rashes, and the one that hasn’t gone away still hasn’t gone away!
I’m wondering if such a short time frame of 3 and a half months (almost daily use) would result in such a detox process. I’m really glad to find these articles about everyone else’s experience and that you also documented your journey from your experience as well. I’m going to continue focusing on eating and supplementing well. Wishing you the best 🙂
Hi April. Thanks so much for your comment and I’m so sorry you’re struggling with these rashes. There are stories on the ITSAN website that discuss how people have entered into TSW even after just 2 weeks of using the creams. I’m glad you’re watching your diet and I wish you the best in your recovery. xo
Hi Heather, thank you so much for sharing your detailed story! I swear I read every single month of your journal.
I’m Wendy and 43 years old. Been using small amount of topical steroid on and off on my face and body for small patches of eczema since late 20s. Recently in Sep 2018, I started itching and developed rashes. Was put on two courses of Prednisone, and used a couple of tubes of Betamethasone. It didn’t go away and kept coming back in full force. The dermatologist then gave me a steroid injection (worse decision of my life) but the rashes continue to go downhill. He then put me on Cyclosporine, an immunosuppressant, for 6 weeks. It worked great and rashes went away completely and I hardly use TS cream during this period. However the moment it got tapered off, the rashes came back again. But i decided not to take anymore immunosuppressant. Now I’m just using some supplements and let my body heal. My symptoms of TSW wasn’t very bad, I didnt have oozing, it was just all over rashes and intense itching. It has been four weeks. I don’t see major flare ups anymore, some troubled site like elbow and legs, but I see strange development of my skin. My whole body skin looks tanned (my colleagues asked me if I went sun tanning) and skin is extremely dry with some flakes, but I’m not shedding tons like many TSW’er mentioned. I also have skin lines at my wrists, elbows, tummy and knees. And I’m still itching all over! Would like to ask you if you if this is normal skin development at the last recovery stage? That skin is darker, extremely dry with lines and still itchy? The skin also feels papery and rough to touch. I half suspect the itch is due to dryness. Could you share more of your final recovery phase and how long did this phase last? Really appreciate your sharing and being so prompt to answer all the questions!
Wishing you well and continue to have good health!
Hi Wendy. Thanks so much for your comment and sharing your journey with us. As for my personal experience, I didn’t go through a time of darker skin like you’re describing. I had a bit of “elephant skin” on my knees, and the skin on my neck looked a bit like goose flesh for a while during TSW. After about 8-12 months in, those had pretty much disappeared. But now, 4 years later, I still have some “elephant skin” on my knuckles. I used the creams on my hands for 25+ years so it doesn’t surprise me that that area is sticking around longer. Maybe it will never go away – who knows. If it doesn’t, it’s a great reminder of how far I’ve come and how much healthier I am now. 🙂 I wish you all the best in your recovery.
Thanks Heather. Did u experience extreme dryness in the last few months of recovery? Like really dry and itchy skin all over the body thought no major flares?
Yes, I do seem to recall being dry and itchy on my hands and legs in those last few months, even though the oozing and swelling had stopped. And still to this day, my fingers get dry when I don’t get enough sleep. That’s my body’s way of telling me I need to adjust something — I see it first in my hands. I’ve changed my perspective on how I look at the dryness. In a strange but real way, I appreciate the dryness on my hands because it’s my body’s way of communicating with me that I need to adjust something.
Wow!
It’s 4am and I’m having another itchy, painful sleepless night.
To stop myself scratching I have been diving into an online wormhole of TSW and I’m so happy I have found your blog!
It is so encouraging to have your journey so detailed and clearly explained! Thank you!
You have inspired me to document my journey so I can possibly help someone in the future too.
I am at the very beginning (half started/research stage). I have gone off The steroid creams cold turkey about 3 weeks ago and my skin has gone insane. Head to toe. I look and feel like a lobster in boiling water.
My eczema journey started when I was 3 weeks old when i got eczema on 80% of my body. My parents took me to a naturopath where they got me to bathe in chamomile and use some oils on my skin.
Didn’t help. And my parents took it in turns to run their fingers over my body ALL night as it’s the only way I could sleep.
When I was 2 i was hospitalized with bad asthma they started mild topical steroids for my skin. And a nebulizer at home for the asthma. It worked and my eczema was reduced to the standard creases…back of my knees and inside my elbows.
Early school days I also developed sores on the corners of my lips, hands, feet and other areas. This is when antibiotics started for frequent infections. I was teased a lot and became very self conscious.
Some time in my early years my parents did an
Elimination diet and it had no effect.
Then in teenege years I was taking oral seriods, using stronger topical steroids and occasional antibiotics and steroid injections.
After I graduated I lived in Africa for a year and I had zero eczema. Bizarre and I’ve never understood why.
Came home to Australia and it returned in no time.
I had some young adult traumas and my anxiety and stress went though the roof and my eczema became nodular big raised hard lumps full of staph. The rash was gone. Antibiotics upon antibiotics, steroid injections directly into the nodules. Gentain violet, wet wrapping. Big dolups of 1% cortisone ointment on the nodules under Zinc bandages. Tried everything that was recommended.
Then was put on immunosuppressants. These worked (along with other side effects) for about 14 months. I became pregnant so i went off the immunosuppressants and all the damage they had done surfaced. All the nodules reappeared with a vengeance. Half of my hair fell out and my scalp was red swollen and weeping constantly. Because my immune system was suppressed while having skin infections and on so many antibiotics I now have MRSA. Which I have been hospitalized for 3 times. I now get a rash if I’m in the sun for more than 5 minutes.
I am completely vitamin D deficienct from not having the sun on me for years. Sleep is almost non existent because I’m always too uncomfortable. Constipated and very aware that my gut is very unhappy and I’m completely over my skin controlling my life.
I really feel like my body has a ton of detoxing to do and I’m quite frightened of the process. I am slowly starting to change my diet.
I have limited money as I’m unable to work.
Truly my skin controls every part of my life and if I think about it too long I get so down and depressed. I wish I could wake up and it would just be gone and I could have 1 day where I don’t have to wash my sheets and I could just be me.
Sorry for the life story. I guess my questions are where do I start? What do I do? It’s all overwhelming.
So far I have:
-cut out all steroids.
-I only use an unscented moisturiser cream. At the moment if I don’t use it I’m bleeding from all over the place. And I have folliculitis on my legs too. A lot.
-I only use argon oil on my face
-Have excluded dairy, gluten, coffee, soy.
-Have started drinking celery juice every morning
-Have got anti-inflamotory recipe books and am using them as often as I can.
-Am considering and researching a gentle liver cleanse. But I don’t know exactly what I should be doing.
-I am having salt baths.
-strong manuka honey on my infected modules. In hopes to kill the MRSA
– praying
Please help if you can. I am a lost mess.
Hi Isobel,
Wow, your story is so powerful and I’m so sorry for all of your health struggles. Thank you so much for sharing that. My first recommendation is always to visit your medical doctor as I am not a doctor and am not qualified to give medical advice. After you seek the advice of a doctor, my thoughts would be to continue with the amazing diet changes that you have described. I love celery juice and the stories on MedicalMedium.com about how celery juice has changed people’s lives. Right now I’m doing the Medical Medium nine-day liver cleanse and that might be something to consider to jump start the detox of your body. A functional medicine doctor can help you set up a detox program to gently and effectively detox your body. Meditation is so important during stressful times like this. Set up a morning practice and stick to it — a time when you either do some gentle yoga moves, journal for a few minutes, do breathing exercises, whatever. Insight Timer is a great app that has tons of short meditations you can listen to. As you know, stress is so tied to the health of our skin. So reducing your stress level is important. Take 5 minutes a few times a day to do breathing exercises to reset your nervous system and begin to break the cycle of stress –> rash –> more stress –> more rash. Be gentle with yourself right now. Give yourself time. If you need to cry, allow yourself to cry. If you love to paint/read/whatever, do a little bit of that each day. Sending you love and light and prayers for healing. xo
Thank you so much for being so brave and posting your story!
It feels like such a relief to me to have Found out about RSS/TSW! I had skin cancer surgery in December and from all the stress my skin had an eczema flare up on my face and neck— my Dermatologist prescribed a steroid which I used only three individual times(only used it on my neck) but I definitely had major Red skin syndrome flare up all over my face and neck 3 separate times and no one could figure out what it was! I found that just using lots of Vaseline really helped to speed up the healing and definitely combats the extreme dryness and heat I was feeling.
I have a couple questions for you or anyone else who has had experience with this, it seems like the steroids caused a thinning of the skin on my neck, even though I only used them three times tops… I can’t see how this would be permanent but I’m wondering if anyone has had experience with thinning skin going away over time? The dermatologist did not say how much to use and I know I didn’t use much at all, but the area is right over my thyroid and The first time I had a flareup I swear I could see the outline of my thyroid in red underneath my skin… And I’m wondering if that area in particular is super absorbent for steroids so it might take longer for them to clear out and for my skin to go back to its normal elasticity?
Also, did you buy an ionic foot bath kit and if so which one did you get or is that something you have done like a massage?
Thanks so much for your input!
Erin, what a terrible experience. I hope the skin cancer is gone. Based on my personal experience, the thinning of the skin and rough patches on my neck did go away. You might consider seeing a Functional Medicine practitioner to run a thyroid panel. Steroids affect the adrenal glands which are also closely tied to the thyroid. Regarding the ionic foot bath, I used the one offered at my chiropractor’s office and also at my Chinese Medicine doctor’s office. I looked into buying one and there are some cheap ones online ($100-$300), but the ones at my doctor’s offices run about $3,000 online so I assumed the cheaper ones would not have the full therapeutic effect. Sending you healing vibes!
i stopped all steroids in january 2010. saw dr rappaport and he helped me get through tsw rss. i was fine in my skin until october 2016. i think im going through a second round. dr rapaport says he’s never seen this before. has anybody known anyone who’s gone through this twice?
Jerome, I have heard of others going through it again if they used a form of steroids again. But sounds like maybe you didn’t do that? Even though my hands have healed from TSW, when I’m under lots of stress my fingers will still swell and start to itch. It’s nothing like it was during TSW, but my stress certainly is reflected in my hands. I think we all have that “weak link” that shows symptoms to let us know when things aren’t right on the inside. My hands are that for me and I know to do extra self care at those times. How are you doing now?
Hi! I went cold turkey on steroids back in December of 2016 after 18 years of topical steroid use. I experienced the same horrible symptoms as you describe. However by September 2017 I started getting better and getting back to work and going out with friends. I seemed to only be improving up until last month! These horrible symptoms are back and it seems like the cycle Is starting up again…the swelling of my fingers and oozing started up again (for the first time in over 6 months) last week. My heart is broken because I thought I had gotten better and now even moving around is painful. Do you know of others who seemed to have improved for a few months and then start up with the symptoms again? I don’t know what to do. Also, did you take oral steroids while getting off of topical ones? I went to a functional doctor a few days ago and she thinks that I need a small dose of oral steroids to help my body produce more cortisol but I’m terrified of any kind of steroids at this point. Any thoughts on this?
Daisy, I’m so sorry you’re still going through this. Yes, I have heard of people having flares later – especially the “anniversary flare” that sometimes happens about a year after most of their symptoms disappeared. I didn’t experience this, but I do tend to notice my stress in my hands. If I’m extra stressed then my fingers may swell or start to itch. It’s nothing like it was during TSW, but I think maybe my hands will be my barometer of stress going forward – which maybe isn’t a bad thing! It lets me know when I need to slow down and do more self care. How are you now? I’m sorry I’m replying so late – this comment got lost in the shuffle and I missed it before.
Thanks so much for your site.
If you can believe I’m a 70 years old used Hydrocortisone 2.5% for 8 days this December .ON MY EYELIDS..got off of it because I didn’t feel right…and then surprisingly got flares which I didn’t know what the hell was happening….found ITSAN and Dr. Rapaport…good thing because if I didn’t I would have gone back to derm and I’m sure I would have accepted more steroids. This whole world was unknown to me as I never used steroids…Hoping because of brief use…it will be a shorter “trip” on any levels. As an older woman do you know of any older women who when TSW stopped or perhaps was going have any hints to get skin soft again and decreasing some of the damage of this withdrawal. Thanks so much.
Hi Ariel. I’m so sorry for my late reply! A few comments got lost and I’m just now seeing them again. For getting skin soft again, I recommend healing it from the inside out as well as outside in. From the inside out….that would include healthy and organic foods and staying away from processed foods and sugars. This also includes plenty of sleep and also stress reduction — so meditation, focused breathing exercises, and time in nature all help with this. For healing from the outside in, I recommend using only pure ingredients on the skin (moisturize with jojoba oil or coconut oil or creams with very clean ingredients). Our skin absorbs around 70% of what we put on it — and you don’t want to put added toxins on top of already damaged skin. I”m sorry you’re going through this at this point in your life! How are you doing now??
Hi Heather!
My name is Stephanie, I’m 26 yo and have used a steroid cream for a majority of my life to treat my eczema all over my body. I am currently 6 1/2 months into my TSW journey and even though I know I have come a long way since this journey started, I still have my bad days of itchiness, damaging my skin from the scratching, tight/dry/sore skin etc everything you’re probably familiar with and I basically cry everyday.
I was just wondering where you are currently at with your journey? Are you still suffering from itchiness? Tight skin? Etc Unfortunately there aren’t a lot of blogs out there of survivors and how they are after their journey so I’d like to hope that there are survivors out there who have gone “back to normal”? When I say “back to normal” I mean will I ever see the day where I don’t intensely scratch anymore? Will I have smooth clear skin again?
Thankyou so much for your blogs! They’re really helpful 🙂
Hi Stephanie. I’m so sorry for my late reply! A few comments got lost and I’m just now seeing them again. I believe you can have smooth clear skin again! The TSW flares that I had on my neck and face and the folliculitis on my legs all went away after TSW. For the dry skin on my hands, I sometimes have minor flares when I’m under lots of stress. My fingers may swell a little and itch at those times, but it’s nothing like it was during TSW. And it’s a good barometer of stress for me — it lets me know when I need to slow down and do more self care. How are you doing now??
Hello again – I have to recommend the herbalist I went to during my Topical Steroid Withdrawal nightmare. I found immense help from Heather’s site during this horrendous ordeal (my TSW lasted about four months – so I would say I’m lucky, though I’m still struggling with minor flaring on my hands).
In addition to acupuncture, the detox methods (I used daily apple cider vinegar as a detox treatment, plus nightly Epsom salt + bentonite clay foot soaks), and anti-inflammatory diet Heather and others recommend, I was also directed to an herbalist. Her name is Abi (The Stinging Nettle – https://www.thestingingnettlesonoma.com) and she is a MIRACLE WORKER. Abi struggled with severe eczema herself, so it was great talking to someone who knows how terrible it can be. She is based in Northern California, but all consultations, appointments, etc., were possible by phone/email, and she mailed me my herbal treatments to my home (a combination of tinctures, tea, and a soothing topical spray that provided such relief, I would have done just about anything to get it). Just like any natural treatment, the herbal treatments did not change things overnight (though that spray provided more relief than I had experienced from anything during the TSW). Though after about a month of the treatment, I started to feel the stranglehold of TSW loosen and I could see real results. I was on the intensive treatment for a total of about two months (plus acupuncture, the anti-inflammatory diet, and detox methods), and while it did not fix the problem instantly, it sped up the TSW process and made my life more bearable during that time.
I can’t say enough good things about Abi’s herbal healing powers – please consider her if you are struggling with Eczema, TSW, sleep problems, etc. etc.! If you are struggling with TSW now, hang in there. From the other side, I can say I know that pain, that hopelessness, that misery. Good luck!
Hiya, I’ve come across your story whilst researching for my 5 month old son. I am concerned he has TSW. He has a patch on his left cheek and his left elbow that we were prescribed hydrocortisone 1% and fusidin for when it become infected. They also prescribed every ointment under the sun. He’s been on there steroid on and off for 3 months and both areas have only got worse and no longer responding to treatment. We have been referred to paeds but I’m further concerned they are just going to push strong steroids. Is the cold turkey method safe for my 5 month old? I can’t stand to see him suffering and using creams make me feel like I’m helping but I’m likely making the problem worse. He’s weeping and bleeding now on his arm and his cheek seem thick currently. I pray he won’t suffer too long. Should I use withdrawl method with him and concidering his short time using the creams do you think he would suffer for long?
Hi Jade. That’s tough. For myself I would go stop the creams cold turkey after just a few months of use (I actually stopped cold turkey after over 25 years of use), but I would be extra careful with a baby. Since he hasn’t been on oral steroids that’s good and maybe it would be fine, but I would want to see the state of his adrenal glands and have that monitored during the TSW. The adrenal glands produce stress hormones for the body and those glands get suppressed by steroids (because the steroids are then providing the stress hormones – i.e. cortisol — and the adrenals can then slow or stop their functioning). When you stop the creams cold turkey….if the adrenal glands have already stopped their production of natural cortisol to support the body during times of stress, then the body is left without any cortisol at all and that’s not a good situation to be in. I recommend seeing a functional medicine practitioner or an alternative medicine practitioner who is familiar with adrenals as you begin his withdrawal. Or do a search for an “integrative pediatrician” in your area. Integrative medicine merges western medicine with holistic approaches. Good for you for finding out about TSW now and not after years of use on him!! You’re an awesome parent!!!
I am from the UK so it’s very expensive to find a private alternative doctor and usually they are few and far between. I’m going to discuss this all with the paediatrician we have been referred to via the NHS on the 18th but I will tell her in no uncertain terms I will not be using any more steroids. He’s too small they should never have given it to him in the first place. What I read really rings true with me. I used to suffer with eczema when I was a carer and my skin was always wet from the travelling in the rain so I was always putting steroids cream on the sore patches. After I stopped working in the rain and I stopped being so itchy and when I flared up I was usually too busy to go to the doctors and I actually didnt realise until i was reading that I don’t have any eczema on me at all anymore. It has cleared up over the years without realising it. Occasionally if I wash my hands too often they start to flair up but I just make sure they are dried properly and it tends to go on its own. What you have shared really makes logical sense. I don’t know why I haven’t realised this before! I’m not sure if he has TSW I’ve used ‘Dr Google’ I wish I could share pictures on here!
Your website has been an immense help and support through my TSW experience. I’m in month three of TSW, and pretty miserable. Both of my legs are almost completely inflamed, raw, broken skin, itching like crazy, plus my hands, and part of my left arm. Anything topical you suggest for the itching, heat, dryness, redness, etc.? Regarding the anit-inflammatory diet, I’m already vegan (lots of leafy greens and smoothies in my diet already), and two weeks ago I cut out gluten, sugar, corn, and most bad oils. Do you have thoughts on things like alcohol and coffee? Also, regarding the lymph massage, since both of my legs are so inflamed, is the massage still effective if done on the rest of my body? Thank you for creating this website and helping all of the folks afflicted with this awful situation.
I’m so sorry for your pain! That sounds beyond miserable. Recently a reader said that she is using RoseHip oil and powdered sugar masks and that is giving her relief on her face. She said to google “healing with powdered sugar”. I haven’t looked it up yet but I like the natural ingredients of the mask. Some people use a rubber comb to gently itch the skin without creating more tears. I would stay away from coffee and alcohol right now. Regarding lymph massage, it would still help to do it where you can. Maybe you don’t need to do a professional lymph massage on local areas – but dry skin brushing could help if the skin is in tact (not on inflamed skin). Also, jumping on a rebounder (trampoline) is a classic way to move lymph if you have enough energy for that. Functional medicine practitioners can also recommend supplements to help support your detox pathways. All my best to you in your recovery. You’re not alone. xo
Thank you so much for the response! How do you know if you’re doing the lymph massage correctly if administering it yourself? Also, you mentioned ionic foot baths – is there a way to ensure I find the right place for this? I’m in San Francisco. Thank you for everything!
Hi Danielle. Here is a good demo for self lymph massage on the arms: https://www.youtube.com/watch?v=3PmHuanqbAQ. Even though her name is also Heather, she’s not me! But I like her explanation. And I like this technique for TSW warriors since it doesn’t involve much rubbing on the tender skin. For an ionic foot bath in San Francisco, you may want to check out Biotherapy Clinic (http://www.biotherapy-clinic.com/ionic_footbath_detox.html). I don’t know them but I like from their website that they merge eastern medicine, western medicine, and naturopathy. And they promote the body’s natural healing powers. I support that! The body heals itself – we just need to support it in its efforts. 🙂
I’m one month in sister and I’m freaking out. I’ve been using RoseHip Oil and powdered sugar masks on my face when I get really itchy. (Look up healing with powdered sugar). And it seems to do ALOT for me. My face seems to want to freak out and I’ll put on my mask and it calms down right away! I can’t go out bc I look so scary at those moments but I know it will all pass. I used steroid cream off and on for YEARS! I was off of them for a good 6 year period though from age 17-23. Then I had a flare up of some sort and was put back on steroid creams. So I’m nervous about how long I’ll actually withdraw for! ?? I’m SO GLAD to see a current post a blog with people talking. It puts me at ease to know I’m not alone in this. I don’t look too terrible right now but I’m only one month in. I would like some help on finding a doctor that bwlives me when I talk about TSW and actually has an interest in helping me and not just throwing some advice and hoping I’ll figure it out. I need some support.
You’re definitely not alone in this sister! Here is a link to find a functional medicine practitioner in your area: https://ifm.org There is a button on the top right of the page that says “Find a Practitioner”. You might also type in “holistic healing” and your city and see what Google comes up with. There are alternative medicine practitioners that are more likely to understand the impact of steroids on the body. And even if they haven’t treated a TSW case before, just tell them you need immune system support, adrenal support, and detox support and hopefully they can help you. Good tip on the RoseHip Oil and powdered sugar mask! Thank you for sharing that.
Thanks for your detailed account. We’re (my wife) just starting month 3 of TSW and your road map, I’m not sure how to describe it, ‘it’s not pretty, but there is a Shangri-La and that brings me hope even if my wife can’t see it yet. The pain is indescribable. The sleepless nights. Rocking with her face in her hands sobbing.
This is by far the most horrible thing she has experienced and I have seen. We are in a bubble; life go by outside and she progresses into the depths of this nightmare, looking for the symptoms to begin to subsid; I trave from one world to the other.
My heart sinks to know the depths of pain this brings both you and your wife right now. I’m glad you see the light at the end – because it most definitely is there. My husband bathed my kids and even washed my hair in the kitchen sink when I wasn’t able to do it. This journey definitely affects loved ones too, not just the TSW warriors. Aside from eating a non-inflammatory diet and supporting the body through this intense detox, my best advice to both of you is to practice breathing exercises and to meditate. Type “binaural beats” into youtube and listen with your headphones if you are new to meditating. It helps you get into the clear frame of mind. For a good breathing exercise, type “4-7-8 breathing” into Google. When under this kind of chronic stress, it’s important to force your body out of chronic “fight or flight” and into a relaxation response and breathing and meditating are two good ways to do this. Hugs to you both.
Thanks for the 4-7-8 breathing, I had forgotten about it from years ago. It’s easy and good.
I wanted to share an ointment called Vaniply that does not seem to irritate the skin even when vaseline or patrolmen jelly burned. Three 2.5 oz tubes for about $21 on amazon. https://www.amazon.com/gp/product/B0065Y5TME/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1 (Delete the link if you think it’s not appropriate for your blog)
I’m on month 16 of TSW & still having problems with my face, arms & hands. My eyebrows itch like crazy & are flaky & scabby up above them & just below them that I’ve lost part of my eyebrows. I’m wondering if my face will ever clear up. How do I take care of my face? Thank you
Hi Lisa. I’m so sorry you’re 16 months in and still struggling. How is your diet? Are you eating any gluten, dairy, sugar, corn, soy, etc? If so, that could be playing a large role in the long recovery. Also, it’s important to support the body in its detox efforts because TSW is overwhelming to the body’s detox processes (the skin is a major detox organ). Regarding your face, I recommend only single ingredient things like shea butter, coconut oil, jojoba oil, etc. That said, I recently found a product called Beauty Balm from Banyan Botanicals and I’ve been really impressed it. The base is ghee, coconut oil, and olive oil and it has some very healing herbs as well. It hydrates and strengthen the skin which should assist in healing. I use it on my face and my hands at night time. All the best in your recovery. xo
Thank you so much for your blog! This is my 3rd time trying to get off TS & this time I’m pregnant. Every other time I was weak around the 4 month mark & started using the TS again. Welp, I’m right at that 4 month mark & really hurting. As I was up in the middle of the night with extreme itchiness, I found your blog. It helped me. Thank you. My only question is, how did you deal with the the itchiness? My issues are mostly on my hands (& symptoms sound exactly like yours). I’m in the tingling fingers phase which I totally thought was a pregnancy thing but realize now it’s probably not. I did find a derm MD in LA that I saw who believes in all of this & he makes some of his own lotions. But they just aren’t helping so much. And because I’m pregnant, I can’t/won’t take anything to help with the itchiness.
Any insight would be great. I mostly try to put some type of lotion on my hands & wear gloves to keep them soft (& me from picking/scratching).
Thank you again!
Oh, it must be so rough going through this during pregnancy! The best thing to do for itchiness is to stay away from non-inflammatory foods. When we experience inflammation from our diet, our immune system responds and for those of us with skin issues, the inflammation shows up as itchiness and rashes. Here is a blog post that may help with the diet aspect: http://www.myhealthtorch.com/2016/10/06/healing-foods-during-topical-steroid-withdrawal/
As far as putting things on your skin, I recommend only single ingredient things like shea butter, coconut oil, jojoba oil, etc. That said, I recently found a product called Beauty Balm from Banyan Botanicals and I’ve been really impressed it. The base is ghee, coconut oil, and olive oil and it has some very healing herbs as well. I don’t think it will make the itch go away, but I think it will hydrate and strengthen the skin. I use it on my face and my hands at night time. All my best to you and your growing sweet pea! xo
Thank you so much Heather for getting back to me & to be honest with you my diet was horrible. First when I went through it I was living off of protein shakes & ice water since I was barely hungry most of the time, but now I’m shopping in health food stores or heading for the fresh organic produce area. I’ve become a vegan also. I gave up caffeine & sugar. Sugar was a huge struggle I would say but I managed to do it & I have a fruit & veggie smoothie or raw juice every now & then, but mainly my diet consists of fresh organic fruits & veggies & plain oatmeal in the morning for breakfast. I also don’t eat any dairy & drink almond milk instead. My face is much better except my lips are very chapped. I’m allergic to coconut oil, shea butter & olive oil. I break out in a huge itchy rash if I put those things on. Aveeno Active Naturals is about the only thing I can put on my skin without it turning red or itchy. For my face I just mainly leave it alone & let it heal naturally. I will say at 21 months today, it’s finally improving!!!!
Hi! I am looking for a “Dr Erin”! What city does age reside? I am 1 month TSW, and I have changed my diet (raw vegan lots of greens, but not sure if this is the way to go. By the way, I enjoyed reading all the details of your journey. Thank you for sharing!
Hi Elisha. Thank you for your comment! I wish you well on your TSW journey and I hope you can find a functional medicine practitioner near you to help you detox and heal. My “Dr. Erin” is in Dallas, TX. Let me know if you need help locating someone near you. Hugs.
I’m in Dallas and would love to know Dr. Erin’s last name!
Hi Mary! I’ll send you a personal note with this info!
Thank you so much for sharing your experience! I have been using steroid creams on my arms, groin, legs, neck and even face for about 4 years now. Today i’ve been off the creams for about 3 weeks and am starting to feel everything you felt on your hands But on my forehead, eyelids, lips, and groin! May I ask how your symptoms are today? I really hope things are back to normal for you. I would also like to say that your TSW journal has given me confidence and faith in the process. It’s been really hard to stay mentally strong and sure rim on the right path when doctors keep trying to feed me more steroids!
I’m glad my TSW journal is giving you the confidence to push through this! Thank you for your comment! Today I do not have any eczema. Also, my legs itched my whole life (in the shower, in bed, just constant itchiness) and that is all gone too. I do notice that when I’m run down or in “toxic overload” (i.e. not eating well), my hands will get dry and start to itch. So my hands are my “dashboard” to tell me when I need to take a break and do more self care. I think we all have our areas that are the “weakest” and that’s where symptoms first show up when we are out of alignment in mind/body. Since you used steroids on your face (thinnest skin – most readily absorbed) your TSW may be even more intense. I can’t recommend enough to find a functional medicine practitioner to support your body from the inside out. Also, meditating will help so much with the mental aspect of this. Sending you healing energy and love. xo
Thank you for all of this information.. I am 21 and have had eczema since I was 2 months old and breastfeeding. As a kid they prescribed low base steroids, eventually growing in strength until I was 18-19 prescribing clobetesol. I have eczema everywhere but the worst on my arms and neck. For months before quitting steroids I used the clobetesol on my neck, chin and eventually my face(GASP) when nothing else was working.. all approved by my doctor. In January of this year I threw out my creams. To say the past 4 months have been anything short of hellish is an understatement. I am slowly seeing improvements after taking a GIANT leap backwards- saw a new doctor who put me on a month long steroid prednisone taper- which I reluctantly agreed to. Did more damage (of course) than good. I know the next few months will continue to be hard, but sites like yours give me tremendous hope and thank you for that.
Rachel, my heart goes out to you. Based on your usage history I can only imagine what hell this TSW is for you. I hope you can find a functional medicine practitioner in your area to speed up this detox and healing process. xo
So glad I found this!! I finally
Have an awnswer to my symptoms. 20’weeks pregnant and constant red flare ups and heat surging through my face.
Many years of topical steroid use behind me, hopefully it’ll get easier with time.
Thank you for your article.
I’m so sorry you have to go through this during pregnancy. I wish you the best and am glad you finally have answers to your symptoms. Congratulations on your new bundle of joy!
Thank you for this. I am a week in TSW, my hands look like yours did! This is inspiring but scary at the same time. I stared a anti inflammatory diet. I am wondering where you are based, as I would like to follow your regime. I live in LA
Hi Amy. I live in Dallas, TX. There is an article on my blog (http://www.myhealthtorch.com/2016/09/27/what-is-functional-medicine/) that talks about functional medicine and at the end there is a link to the IFM (Institute for Functional Medicine) where you can find a practitioner in your area. Once you get on the IFM page there will be a link at the top right that says “Find a Practitioner”. It think it will be enlightening for you to do the functional medicine work up and identify where your body is deficient and find areas where you can help your body through this intense detox. I have a few other thoughts for you and will send you an email. xo
Fabulously informative and so relatable. I now know what the painful bumps are on my lower legs, I just hadn’t realised it was part of TSW. Thank you x
Emma, so glad you found this helpful! Whatever you can do to help your body detox would probably be helpful for the leg bumps. One of the ways we detox is through our skin, and with all the steroids we have used…our bodies have lots of detoxing to do! xo