Author Topic: A Summary of My 3 Years of TSW  (Read 237 times)

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Offline melmel

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A Summary of My 3 Years of TSW
« on: July 14, 2017, 09:32:19 PM »
Greetings! Iím coming up on 3 years and want to document for others my experience with this nightmare. Iím currently in the middle of a flare that started in late April. Itís been awful, needless to say. Not like the beginning, but horrible enough. Plenty of oozing, days in bed, sleep issues, fatigue, burning, shedding, pain, etc., the whole nine yards. Sigh.

My Usage

I used topical steroids for approximately ten years off and on for a rash that started when I was 28 years old and six years later was diagnosed by upper GI endoscopy and skin biopsy as celiac rash (dermatitis herpetiformis). I never had eczema as a child, although I did have hay fever allergies. After I stopped eating gluten, however, the rash went even more crazy. I also had an allergy to neomycin, which I didnít realize for quite a while, so it was also causing the rash, which was most intense on my inner thighs and hands.

In 2004 to get things under control after I stopped eating gluten, I started with the lower kinds of topical steroids and also had some shots, canít remember specifically now.

Ten years later, completely free of gluten, I was still rashy and using topical steroids to control it. Little did I know the topical steroids were the cause of the rash.

I was mostly using triamcinolone the first 8 years. The last two years, I was using fluocinonide and clobetasol. I used them sparingly on my hands and inner thighs. I had and continue to have TSW on every single inch of my body except the soles of my feet, tips of my toes, and tip of my nose. The stuff travels.

0 - 26 Months

In August 2014, my dermatologist who practices at our local teaching university suspected I might have a problem with the steroids themselves and suggested I stop using them. When I did, I swelled up so badly that I went to the ER (this was over a weekend when the derm was unavailable), where they gave me a prednisone shot or two. I stopped steroids August 7, 2014.

Over the next three months, the TSW came on and traveled all over my body with the redness, burning, oozing, swelling, etc. You all know. It continued basically up and down but non-stop until month 26.

I tried Moisturizer Withdrawal in months 7 and 10, but I just couldnít manage it. The pain was too intense for me. Around month 18, I was able to transition from Vaseline to coconut oil.

Around month 9, I went on cyclosporine. I was still trying to work and I just couldnít manage life and be functional, so I thought it would help me. I was on it for nine months and I do think it took the edge off a bit and Iím glad I used it. I was under the care of the same dermatologist at this time.

I was able to work from home during the first five months of withdrawal. After that, I returned to the office. I had an understanding boss and we worked out a schedule that I could manage. However, by month 12, I was still really struggling and my life had come down to suffering and working. I was so very miserable. My husband and I decided that I needed to stop working. We decided to sell our house so that we could do that financially. There were other personal factors around this decision, but for me it was mostly about being able to stop working. So we sold our house and I quit working in month 18. I have not worked since and am very grateful I donít have to.

Months 26-32
I got a break at month 26, which was October 2016. It just lifted out of the blue and remained that way for over six months. One thing that remained were the night sweats, however. And each month around my period, I would have a day in bed of total exhaustion and minor oozing. But other than that, I was able to function in a way I hadnít yet before. I was going to the pool and swimming again, to give you an example. My skin wasnít perfect, but I was able to live my life again. My skin was not impacting every single second of my life. I was getting back to normal and able to function. I honestly thought it was over. Ha!

At the end of April 2017, I started flaring again. It was absolutely devastating. Iíve never experienced depression before like that. Everything came back full force. It is not as bad as the first two years, of course, but it is plenty bad.   

Whatís helped me are ice packs, Epsom salt baths, acupuncture, meditation, audiobooks (great for passing the time when youíre in bed and canít move), Vaseline (first 18 months), coconut oil, almond oil, 50-50 ACV/water solution to control itch, my dog, and just absolutely anything that will give me the least bit of comfort. For the icy-foot syndrome at night, I used my dogís microwaveable plastic pet-bed heater. I already do a modified diet due to the celiac disease, so I have just stayed with that. I avoided alcohol for the first two years. I tried weed a few times but it just made me insanely itchy. 

One thing I would suggest is trying to get a letter from your doctor, if they are knowledgeable about TSW, for your medical file. My dermatologist wrote up a summary for me, including references to the medical literature, to give to future doctors since Iím no longer in that health plan. This letter basically tells any future doctors what TSW is and that I should not use steroids again unless itís life or death. Iíve given it already to one doctor and it was very useful.

So thatís where Iím at today. Still flaring. Still struggling. Still hoping this nightmare will be over soon.

Iím so very grateful for the ITSAN forums. I have lurked quite a bit and othersí words of wisdom have gotten me through some very dark times. I am also very grateful for the support of my husband and parents to cook, clean, shop, do laundry, and otherwise take care of me during some of the worst times when I was unable to take care of myself. I donít know how single people do this alone.

Anyway, hereís to hoping this current flare will end soon and this nightmare will finally be over.

I have been keeping a blog with more details at You are not allowed to view links. Register or Login. I will duplicate this post there.

Thanks to everyone for reading and being here and offering encouragement and support. Iím wishing us all fast healing and a full recovery!

Offline Georgie.C

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Re: A Summary of My 3 Years of TSW
« Reply #1 on: July 15, 2017, 09:47:19 AM »
Hello
You are not alone there have been quite a few of us who have had a bad flare at year 3 after a good 6 months of relativiely clear skin. Mine is still in flare 4 months in, but I'm sure we will get through it eventually so hang on it there.

Offline melmel

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Re: A Summary of My 3 Years of TSW
« Reply #2 on: July 15, 2017, 02:40:51 PM »
Thanks, Georgie! Yes, every day feels like a mountain to climb right now, but I'm sure I will get through it eventually. Oy.

Offline SwankyButters

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Re: A Summary of My 3 Years of TSW
« Reply #3 on: July 18, 2017, 08:47:40 PM »
Thanks for your post.

Over 4 years here and still in a bad flare that started close to the beginning of the year. More isolated than all over red but in the areas I'm flaring, it's pretty intense. Not as painful as the past but still horrible.

I'm not sure all the reasons why but stress has been very high do to a apartment move and money and this condition. Not sure if there are other factors.

In any case, looking at your pictures on your blog, we have very similar looking skin. Helps to see cause it makes you realize this is real and not just in your imagination.

Thanks again and consider yourself lucky you have people around you who are supportive, I'm sure that helps a ton. On my end, I feel like nothing more than a burden to those in my life, the few people I do have left in my life. Maybe it's more my feelings, than them not being supportive... Hard to tell anymore.

Good luck with it all Mel.
Used TS for 8 years on and off, started using TS on my belt rash from a nickle allergy. 3 steroid shots, 1 unknown, 2 Kenalog (Triamcinolone) shots.

Topicals used: hydrocortisone 1% - Fluticasone Propionate .005% - Triamcinolone - Fluocinonide .05% (Used only once)

Stopped steroids June 8, 2012

Offline melmel

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Re: A Summary of My 3 Years of TSW
« Reply #4 on: July 19, 2017, 02:47:52 PM »
Hi Swanky, thank you very much for your response. I know what you mean about feeling like a burden. It's an awful feeling. It's one thing to have to deal with all the physical symptoms of this nightmare, but another thing to deal with the emotional aspect. And honestly, I think there is something extra intense about the late flares and their emotional toll. I'm in what I consider my first late flare and it's amazing how inept I feel at dealing with it from the emotional angle. I think after three years of dealing with this illness, a flare now is just overwhelming. I'm just *all out* of strength and courage at this point. At least that's how it feels some days.

Anyhoo, I hope you, and we, can hang in there. Best wishes on the yellow brick road.

Offline SwankyButters

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Re: A Summary of My 3 Years of TSW
« Reply #5 on: July 21, 2017, 07:15:01 AM »
Mel,

You said it exactly how I feel it.  "I'm just *all out* of strength and courage at this point" yes, yes and yes. Even with that though, I fight that feeling and it's not easy, it wouldn't be easy under the best of times and these days it's not near the best of times for more, closer to the worst of times, yet I try and I fight cause there is no alternative.

Overwhelming sums it up too but I try, we try, we keep looking for the light... I'll see you when we get back to Kansas and we will get there, we just have to stay sane on the way there... :-) We hang...
Used TS for 8 years on and off, started using TS on my belt rash from a nickle allergy. 3 steroid shots, 1 unknown, 2 Kenalog (Triamcinolone) shots.

Topicals used: hydrocortisone 1% - Fluticasone Propionate .005% - Triamcinolone - Fluocinonide .05% (Used only once)

Stopped steroids June 8, 2012