I have addressed this question in the past and will no doubt address it again in the future, as it is the ONE question that everyone embarking on this journey wants answering.
When I first started writing this blog back in December 2011, my only source of information on the subject was an article on Wikipedia and Dr Rapaport and Dr Fukaya's case studies.
The Wikipedia article seemed to hint that with antibiotics, "Steroid rosacea" could be cured within months. Dr Rapaport's articles mainly featured people who were cured within 6 months and Dr Fukayas detailed report contained improvement photos of patients over the course of about 18 months.
Naturally, I thought I would be "done" in about 6 months, which was both naive and optimistic and based on a lack of knowledge on the subject. Remember I have used steroid creams since childhood, and had used medium strength creams on my face daily for the last 15 years. This was not really going to be a quick fix.
Since then, I have re-read these articles many times and it occurs to me that the reason the patients healed so quickly was because the majority of them had not used steroid creams long term like I had. If someone uses a mild steroid cream for a short period, the withdrawal time will be a lot quicker than someone who has used potent steroids for decades.
Incidentally, I did have a "healed" phase between 7 and 11 months where my skin was virtually normal. I have now discovered that this is common in topical steroid withdrawal. I flared again at 11 months and my skin has not returned to the state it was in at 7 months.
Happily, I have read of skin friends that are now healed at about 18 months. Others are reporting healing at 3 years off the steroid creams. When a doctor was recently interviewed on the subject, he said that he felt that 3 years was the average withdrawal time. Children obviously heal a lot quicker.
Only yesterday I was speaking online with some TSW veterans, one at 2.5 years, the other at 3 years. neither was fully healed, though both had experienced major improvements.
I now believe that 3 years may be a realistic timespan to expect full healing, and it is important to stay realistic, otherwise you would go mad. This is what I know so far about the TSW timeline:
1-4 weeks off steroids: Initial rebound flare. Skin starts to burn and turn red.
1-4 months: Red patches start to spread and merge to cover whole body. Limbs start to swell and skin oozed fluid. The classic "red sleeve pattern" usually appears on the arm, stopping abruptly at the wrist. Skin cycles between red flares and dry flaky phases.
4-6 months: Flares become less frequent, although some have a peak flare at around 4 months.
6-12 months: The skin calms down. one can resume normal tasks again and socialise more. The skin may appear normal in many places.
11 months+: at about a year off steroids, the skin flares again with remarkable intensity, taking the sufferer by surprise.
18 months: Some may be healed at this point.
3 years: Most will be healed by this point.
That is as much as I know so far. Obviously as I go on, this blog will fill in some of the mystery between the 12 month and 3 year mark.
21 comments:
Thanks Louise for some idea of the timeline of flashes and the healing process. I just started like 5 days ago fully stopping steroids. Prior to stopping I had been applying medium to high strength Betamethasone intermittently for last 3 to 4 years. Really fearful of the long recovery phase. My eczema is on my hands and feet and this is affecting my daily life severely. Thanks again for blogging.
Hi Lee.
Remember that I used steroids for the last 15 years. Luckily, you have only used for 3 so I hope your withdrawal process will be quicker than mine. x
Thank you for this post. I am at 12 monthes now and it has disappointedly flared up again. This gives me hope.
Hi, I only used my betamethasone valerate 0.1% cream on certain areas of my face (under eyes on cheekbone area and around mouth) for about a year or less, pretty much daily, I stopped using the cream 4 days ago and my face is a red, burning, itchy rash.. will this rash spread over my entire body if the cream was only used on my face? and will my recovery be shorter since I only used the cream for about a year or so? just curious about your opinion. Thanks!
Betamethasone is quite a strong steroid. Unfortunately, there is a chance that you will get rashes in places other than your face as you go through the withdrawal process.
Your recovery may be shorter, but in reality, you may be looking at at least a year, probably longer.
Betamethesone is the forbidden frickin fruit!!!! It is amazing at first! A miracle! You share it with friends who have stubborn rashes! BUT, when the dust settles, HELL is to pay.
So true!
A friend has been on head to toe hydrocortisone 2.5% ointment for over 22 years. He is just on day 2 of no steroids. I need to say thank you for showing me the challenges we are in for.
Glad you found the blog helpful. It's worrying how hydrocortisone is considered in medicine to be a "mild" steroid, some even consider it safe for babies, and yet it can still lead to steroid addiction. I have seen many cases where this has happened.
I hope your friend will be OK and the withdrawal process will be a smooth as possible. Please consider joining the ITSAN forum for help and support going through this.
Best wishes x
Oh gosh! I'm so scared. I just started the TSW process after many years on and off hydrocortisone. Its mostly the 0.05 stuff with an occasional .1 tube but my entire body is red and sunburnt now. And the chills! Goodness, if I could just stop shaking. I'm so glad the holiday break is coming, the insomnia is killing me especially since I tend to fall asleep only around 3 am but have to get up at 5:3 to get to work. ARGH, this stuff is evil!
Has anyone used Ichthammol? The tar stuff, I remember using it on my eczema as a kid.
Did you use steroid cream intermittently for 15 years or was it an everyday/frequent thing? Your recovery process was so long, well done for sticking it out.
I actually used longer than 15 years. I used steroid creams from early childhood on and off throughout my life, but the last 15 years before I discovered TSW, I used them daily on my face, so yes, a huge cumulative usage!
They stopped working for me in the end, as my skin got used to them, so TSW was my only option.
Thank you for posting a timeline. I had been using a clobetasol solution on my face for a psoriasis flare I had while pregnant, by the time I had my daughter and my hormones had calmed down my skin was addicted to the steroids. My daughter is now 8 months old and I have been using the solution on and off since she was born. I finally was able to get in to see a dermatologist yesterday and he really didn't give me much of a timeline to expect to see improvement. I just got a,"Stop using the steroids and when you are done breastfeeding I have some ointments I can give you." Nothing about how long I should expect recovery to be. I am so embarrassed by my skin but thankfully my husband is wonderful and has been really supportive. I am glad that I have done some research on my own so I have an idea of what I am in for.
Thank you for the timeline Louise. I am at 11 months and going through a very different aggressive flare than the first months. I stopped 20+ years use of strong TS in May and I cleared almost completely by July. Now back with a vengeance! I am following Dr Sato's MW advice and I look like a flakey mummy after 4 days of looking like hot oozing bacon. Hopefully 2 more days till it all drops off. I am back on a strict Paleo Diet and drinking lots of Oolong tea. I hope this is the last big flare until I am cured. I think I'll always have eczema and will have to watch my diet esp no alcohol. Thanks again for the timeline - very encouraging. Will
Thanks will. I'm glad the timeline has helped you.
I have been using hydrocortisone 0.5% cream on my eyelids and around my mouth on and off for the past year. But in the past few months more constantly every day. I want to stop using the cream because after much research and many peoples blogs like your own i understand why it is just getting worse and worse. Your timeline has helped me understand that maybe i will have on going TSW symptoms but the worst would probably last for a year. Do you think that is wishful thinking? Or because i have been using a mild steroid for a short length of time it could be faster? Thanks
It's hard to say, as there are many factors in healing time. However, your low usage might indicate that you would heal quicker than others. I know someone with similar usage who healed in 9 months. Hope you will be ok. X
Hi, I have been driving myself mad these last few days researching TSW and wondering if I may be going through it. I have suffered from eczema all my life. When I was a kid it was bad, and had to use steroid cream often. Like you, during my teens and 20's I had clear skin and was able to use anything and everything on my skin with ease! (Oh how I miss those days!) I just recently moved and my skin completely freaked out! I was seen in urgent care 3 times in a period of 32 days and prescribed prednisone (oral steroids) all 3 times! I was also told to use my steroid cream on my body as needed. I would like to think that just using it this last month occasionally "as needed" wouldn't be a big deal. I even changed my diet-no dairy or gluten/wheat to see if that helps. I still get these random flare ups, but by no means are they as bad as what landed me in the urgent care. My question for you is: how long after stopping topical steroids did you start to see signs/symptomssort of signs/symptoms that showed up?; and what were the first ? AND do you think taking so many oral steroids within a short period may cause me to have some sort of withdrawal symptoms? Any and all info you have would be greatly appreciated!
Hi Louise, would love to read more about your timeline specifically from months to 11 to 3 years in this blog.
Hi there,
So I used Betamethasone 0.1% and 0.05% almost every day for the past 4 years on my hands, ankles and forehead. I stopped using it cold turkey 2 weeks ago and my hands are going crazy with blisters, cracks, raw skin and very red rashes. My forehead is also very red and painful with a lot of flaking. I was just wondering what the best withdrawal methods are? I have been using ACV soaks and seaweed baths along with jojoba oil and coconut oil but I think they have little positive effect on my skin. I was wondering if you put anything on your skin during withdrawal or if you just leave it to go dry to stop the weeping? This is very stressful for me as I use my hands at work a lot and have to do small amounts of cleaning, barwork and kitchen work on my shift as a night porter. I hate this so much and want it to clear but I guess I have a long road ahead of me! :( Any help would be greatly appreciated!
Hi Yoon. Sorry to hear you are going throu this ordeal whilst holding down a job too. You are brave.
I've used lots of things on and off to help symptoms and different things have helped at different times. Some things that used to work are no longer effective for me.
It's worth trying out the drying out method. Some people swear by it. If you feel uncomfortable, you can always dab some moisturiser on. I also found that for my hands, it helped to bandage them with tubular bandage and put menthol ointment on them. These days I just use a thin layer of Vaseline on my hands. Epsom salt baths have helped me too.
If you are not already in the ITSAN forum or Facebook group, I'd recommend joining so you can see what works best for other too. X
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