Tag Archives: Topical
Day 352 – Day 364: THE END OF MY FIRST YEAR OF TOPICAL STEROID WITHDRAWAL (TSW)
ONE YEAR!? HOLY MOLY. I am believing that the worst is over. This year has been hell. Utter hell. And I’m ready to move on. The end of my first year was spent with the same old same old. Dry but doable with makeup. It loves moisturizer. I ended the year with a flare. From moving and maybe just from my 1 year flare….
Day 352
Day 353
Day 355
Day 358
Day 359
Day 360
Day 361 .. THE MOVE!?
Skin was so calm.. I felt great. |
All day… felt amazing… |
Til I laid down to sleep… Then Hell broke loose. |
Day 362
Day 364
Day 387 – Day 395 WHIPLASH End of Month 13 Topical Steroid Withdrawal
I’m a bit behind…. This is the end of Month 13… the end of March 2015….
This post is a perfect example of how devastating TSW can be. The highs give you a false sense of security. Like you’re more healed than you actually are. Then when you flare, it makes it seem like it’s worse than it actually is and you feel devastation. I was feeling great! Skin soft. No pain. MINIMAL itching. Minimal dryness. Spent some time in the sun. (I am only posting the swimsuit pics so you can see how great my skin was). Then, the day after I laid out in my swimsuit, I flared massively. I just wish it would be all or nothing. But we’re powerless and at the mercy of this completely avoidable and unnecessary disease.
Day 389
Day 390
Day 391
Day 392
Day 393
Day 394
Day 671 – Day 701 Topical Steroid Withdrawal Month 23
Pretty much nonstop flare. EVERYTHING sets me off. ALL food introductions in the smallest amount cause the full body rash. Nothing makes sense.
Day 731 – Day 761 Topical Steroid Withdrawal Month 25
Topical Steroid Withdrawal Month 19.5
Over the past couple of weeks I had stopped taking Ciclosporin but my skin just wasn’t getting better so I decided to use it again the other day as I need to be able to work. I’m pleased to say doing this has helped to kick-start it and it is working again.
My visit to the dermatologist this morning ended up being surprisingly fruitful. She wants to keep me on the Ciclosporin for a year and then I will need to come off again, which is fine by me. I enquired about blood testing for deficiencies which she gladly agreed to do and said Vitamin D deficiencies can be a huge culprit in eczema cases. This I already knew as I have taken the supplements in the past but it was nice to hear her say it.
She also suggested taking my IgE levels again for cats, dust, pollens etc. in view of referring me onto an immunologist for desensitisation. I am so bloody happy. Not once when I asked about this in the past at my previous hospital was I told this would be possible so it is nice to have that avenue to venture if needs be. However I am also keen to find out my test results now that I am nearly 20 months into my TSW. Before quitting steroids I used to have acute allergic reactions and was even given an epi-pen as a precaution as it was unknown as to whether I would go on to develop anaphylaxis. However I noticed as time went on during my TSW I could stand to be around cats and have more exposure to allergens without rushing to A&E.
I also asked about Dupliumab which is what my previous derm wanted me to trial but I was fed up of being a guinea pig. I only really mentioned it to keep her well off the steroid route but she appeared to be happy with this option though the hospitals in this area aren’t trialing it as of yet but I would be a suitable candidate if it came about.
When she examined me she asked what I was using topically as my skin is currently very dry. I told her white soft paraffin only, to which she asked about steroid use. I said my skin seemed to have become addicted and they weren’t working for me any more and to my complete surprise she said “Yes, that can happen.” What?! This is the same lady who said the complete opposite last time I saw her. No doubt she’ll say differently again next time I see her but even still!
I have come away feeling very happy. I know derms are the enemy but today she seemed to be on my side and I left unscathed apart from being stabbed in the arm of course.
Happy days
Here’s a silly unflattering pic I just took to showcase the paleness:
Day 487 – Day 517: Month 17 Topical Steroid Withdrawal
These bumps appeared out of nowhere and felt kind of hot. |
The wrinkles are part of the healing. |
Grocery store lights are the worst when I’m flaring. |
489
Wearing a little makeup. Skin was very calm. Still have wrinkles that I think will go away. |
First time in shorts and a tank top in a LONG time. |
492
Flaring |
493
About as bad as my neck got this month. |
Wrists have improved so much since the cetaphil |
With makeup I looked Like this a lot. FINALLY got my hair cut! |
511
LOVE my icepacks after the shower… |
Day 762 – Day 791 Topical Steroid Withdrawal Month 26
Day 549- Day 578: Month 19 Topical Steroid Withdrawal
(9/1/2015 -9/30/2015)
For this month I don’t have near as many pictures. For one, I lost some of them when I had to get a new iPhone. Two, I was super busy getting back to work. This month started out with a bad flare from some stew that I ate. I branched out and paid for it. Hoping that some day I’ll be able to eat again.
DAY 1 AFTER STEW549
DAY 2 AFTER STEW (I always am the worst 2 days after ingesting something)
550
551
EVERY time I go to walmart this happens…. |
I drank some tap water then had a shoot where I sweat. I got hives on my tsw effected areas from it. |
576
By the end of my trip, I felt amazon. Skin was feeling so strong. This was right after a shoot. |
705 Days Free of Topical Steroids! The TSW Journey continues…
As a last salute to a summer that went by way too fast, we took a cruise with some friends to the Bahamas and visited my mom and family in Charleston for 8 days of sun, food, and fun. I decided to leave my militant TSW rituals at home for the week to see how Brian’s skin and scratch would fare (see Log dated 8/30/15). Maybe it’s just a summer thing–like last year–but his skin got better and his scratching was no worse despite heat, sweat, sun, and water. See pictures dated 8/27/15. It was a nice vacation from our TSW routine and “itch-think”, and Brian spent all his waking hours playing ping pong, eating soft serve ice cream, and having a blast with his friends.
We’ll continue the experiment of no vitamins/supplements while monitoring energy, function, skin, and scratch. Hopefully, we’ll be able to discontinue the daily vitamins and supplements (which is like pulling teeth to get him to take anyway) which will simplify our routine.
TSW is very unpredictable, especially in the later months like 22 and 23+ months out. You think you’re finally done with the cycles and are healed, then BOOM! the full-body symptoms are back again, as if you were in the horrific early months of TSW. For this reason we are thankful for any and all good skin and itch times.
October 2015 will be Brian’s 2-year anniversary of stopping TS. Beyond the itch, he has definitely come a long way. Praying for strength, endurance, perseverance, peace, and healing for all TSW infants, children, adults, and caregivers. Never lose hope!
“Those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary; they will walk and not be faint.” Isaiah 40:31