Topical Steroid Withdrawal exists, but thankfully it isn’t as widespread as you may think. Read on to learn more. By Neil R. Lim, BA and Peter A. Lio MD (see bio below) Topical corticosteroids (TCS) were hailed as a modern medical miracle when they made their debut over 60 years ago. For the first time, many […]
It’s an Itchy Little World
Tag Archives: Steroid
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!?
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| Skin was so calm.. I felt great. |
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| All day… felt amazing… |
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| Til I laid down to sleep… Then Hell broke loose. |
Day 362
Day 364
Month 13 –>
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:
For reference this was me the other day:
Day 457 – Day 486: Month 16 Topical Steroid Withdrawal Redskin Syndrome
Well, month 16 was interesting. I started using Eucerine Restoraderm on a regular basis, showers became quite enjoyable, and I visited Portland and loved it. I still have crap skin on a regular cycle, but the crap is becoming less severe and the good is becoming more predictable and regular. I feel like the restoraderm is helping heal the skin barrier.
SLEEP: Sleep is better. I slept brilliantly in Portland because I was on an air mattress and it was 50’s at night. I didn’t sweat. Now, at home in hot Texas on my pillow mattress I sweat and wake up itching. On the whole, sleep is MUCH more consistent and regular. I don’t feel as exhausted all the time.
HIVES: Hives are popping up as of the end of this month. They are uniform bumps and are itchy initially and then just take a while to go away. They are only on the still damaged skin. The skin that’s really red after the shower. The skin that goes to hell when I flare. I’m assuming this is a good sign…?
BURING/STINGING: So, showers were moderately painful at the beginning of this month. The water initially was fine and then once my pores opened up, it stung unless I used VERY warm water. Then, once I got out, it stung for a good solid 15 minutes straight. Once I started using the restoraderm, it got better. The restoraderm STUNG when I used it for most of this month with decreasing intensity as the month went on. It would sting when I rubbed it on and then as soon as I used the water it stopped. Then using the lotion after caused the after sting time to shorten. By the end of the month, the wash didn’t burn and the after sting was minimal. So, definite improvement.
SWEATING: Dude. COME ON. Sweating still stings and burns and itches like hell. The surface area is definitely smaller! It’s now only my neck, face, and a little on the shoulders… whereas before it was my whole body that was under a fire ant attack. Living in the texas heat is hard.
CLOTHES: I’ve started wearing…wait for it… SHORT SLEEVES AND TANK TOPS! gasp.
Anyway… on with the pics.
Day 457
Day 458
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| TSHIRT!!!! |
Day 460
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| First time in a tank top in a LONG time. Went to the mall with my big girl! |
Day 462
I ate cookies at the mall. Gluten and dairy free… but a lot of them. Paid for it. 
Day 463
Day 465
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| At the end of the day sometimes I have these flakes. Super hot. |
Day 466
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| No makeup… mild skin… Lips are meh. |
Day 468
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| Legs have been painful. Hurts to shave. |
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| AFTER SHOWER |
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| Few hours later. |
Day 469
Ate gluten free pretzels on the plane and paid for it…
Day 470
Day 472
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| These kind of hives all the time. |
Day 473
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| I ate an apple while shopping and the juice on my hand gave me hives. And irritated my lips. |
Day 474
Day 475
Day 476
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| Dryness subsided a bit but the hot redness comes and goes. |
Day 477
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| Spent the whole day outside and in a tank top! JOY!! |
Day 482
My skin reacted crazy coming back home to the texas humidity, heat, and pollen…
Day 483
Day 484
Day 485
Day 486
Peace Out Eczema
Day 487 – Day 517: Month 17 Topical Steroid Withdrawal
(July 1 – July 31 2015)
Hi guys! Sorry, it’s been a while. My life has gotten busier and busier as my skin has gotten better and better. I still flare, but I get over the flares fairly quickly. This month I had a lot of hot red bumps. They would just appear out of nowhere or something would set me off. However, this month I wore tank tops! Please keep in mind that I don’t take a lot of pics on the good days. Most of the pics I take are to document the bad skin.
487
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| These bumps appeared out of nowhere and felt kind of hot. |
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| The wrinkles are part of the healing. |
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| Grocery store lights are the worst when I’m flaring. |
489
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| Wearing a little makeup. Skin was very calm. Still have wrinkles that I think will go away. |
490
491
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| First time in shorts and a tank top in a LONG time. |
492
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| Flaring |
493
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| About as bad as my neck got this month. |
497
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| Wrists have improved so much since the cetaphil |
509
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| With makeup I looked Like this a lot. FINALLY got my hair cut! |
511
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513
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| LOVE my icepacks after the shower… |
514
516
Month 20 Topical Steroid Withdrawal
Hey guys,
Of course everything has gone downhill again. As it always seemingly does with me.
OK, so as of last Friday (23rd Jan) I could feel the itchiness around my nose/ mouth returning. This of course then reared its ugly head and manifested itself as the infection of the previous 2 months. I have no idea why it always starts around my nose/mouth area. We’ve done countless swabs and there just isn’t any rhyme or reason for it to occur. One of those many mysteries. So yes, back on the god damn antibiotics.
However, I also feel there may be a connection between these infections and the Ciclosporin intake. When I took Ciclo in the past, in the very first stages of my withdrawal, I kept getting countless infections, including MRSA, which was never an issue prior to this. For that reason I decided to stop it once again in August 2013 to give my body a break. Yet even still, the infections never manifested the same way each time as they do now. Although when I moved to Leeds everything flared up again and so if you have been reading my blog for a while you’ll know I’ve been backwards and forwards with all this and had to go back onto it again for the billionth time.
Most recently I’ve noticed with these infections is that it seems to be a week in to taking the full dose of Ciclo that my skin will clear up nicely but days later these infections develop. I think it may be finally time to call it a day after this round, providing my skin is tolerable enough after this bout of infection to carry on without involvement, unlike these previous months where I have been left in a worsened state.
I have no decent photos to show you of my most recent episode but I can assure you it has been just like the others, weeping yellow crusts, pain, soreness, extreme itching and all that jazz.
I do however have this picture I took today where you can see I have some more hair growth. This always makes me happy. One day I may even restore my hair to its thickness I had when I was 12, but I would be equally pleased with having my hair circa 2009.
You can see that the antibiotics are doing their job and beating the infection. I am now left with areas of redness mimicking that of a rash, but this is the healing skin before the peeling stage. I love that stage even if it is messy and means I have to watch what I wear and the trail I leave behind me.
In other news, I received a phone call from my derm nurse whilst I was initially typing out this post to see how I was getting on. I decided to enquire about my blood test results that I had taken nearly a fortnight ago. My iron levels were low but still in normal range – I had a reading of 10 and the normal ranges are 5-300 so it could probably do with some boosting. She couldn’t however find the Vitamin D test so I might have to have that done again.
Now, with my IgE testing this is where it gets somewhat interesting. She said my results fell into the bracket of “weak positive” but couldn’t tell me much more than that. Last time I had my levels tested I was well above the 5000 range but I have no idea how that even equates and what the unit of measurement for that is?
I did however find a site that stated a grading system for allergen ige levels:
0 being negative at a reading of <0.35KUA/L
1 being weak positive at a reading of 0.35-0.7KUA/L
all the way up to the highest at grade 6.
This kind of makes sense to me because when I was very first tested in 2009 I was giving ratings – 5/6 dust mites and 4/6 for cat dander which seems to reflect the graded system. I want to know how my new reading equates to the “thousandth” measurement and what it would be now if I’m now a ‘weak positive’.
I can only evaluate from this set of results that my IgE levels have diminished since going into steroid withdrawal and for that I am ecstatic!
Sorry it’s a long winded one today and I must say, I thank each and every one of you for your kind advice and words. Maybe one day I will see the light but for now I plod on and get through this how I can.
Happy healing!
P.S. my blog is 2 years old now!
I Have Eczema
Day 518- Day 548: Month 18 Topical Steroid Withdrawal
(August 2015)
Lots of food flares this month. I experimented with different foods that are on my list. Some of them didn’t give me hell until eating them for 2-3 days. The last day was a reaction to a beef stew I made. It did me IN. A lot of the pictures where I am REALLY red are just after a shower. I take VERY hot showers because it burns the itch away. Feels amazing and doesn’t scratch the skin. I’ve heard it’s “not good for your skin” but I don’t care haha
519
520
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| So itchy and painful… But NOTHING compared to early months. |
521
522
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| The later part of flares are always really really flakey. |
524
525
526
527
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| Right after shower |
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| Skin feels super thick and inflamed |
528
529
530
532
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| More of the hot bumpy rash |
535
537
538
539
542
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| MY EAR… Been having trouble with this one…. Falls the eff apart when I flare. |
544
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| No matter the flare, I can typicall get cleaned up pretty well… |
546
547
548
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| The stew DID ME IN. SOOOOO itchy. SO annoying. |
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| Right after shower, but the inflammation from the stew is quite bad. |
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
553
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| EVERY time I go to walmart this happens…. |
555
560
561
562
563
568
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| I drank some tap water then had a shoot where I sweat. I got hives on my tsw effected areas from it. |
576
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| By the end of my trip, I felt amazon. Skin was feeling so strong. This was right after a shoot. |
Day 579 – Day 609 Topical Steroid Withdrawal
(10/1/2015 – 10/31/2015)
Lots of calm this month, but some food flares. Food is ALWAYS the cause of the big flares. Always. The big chunks of days missing just assume the skin stayed the same. Something to note, I photograph a lot right out of the HOT shower. This eccacerbates the redness and inflammation for a bit. Really highlighting the damaged skin. What’s also important to note is after icing and applying makeup, I can appear totally normal most days.
582
583
587
588
591
592
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| I always photograph right after shower. It accentuates the affected areas. |
593
594
596
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| I cooked something with dairy and then rubbed my face on accident. |
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| Makeup does wonders… 597 |
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| My shoulders are the worst skin I have and they are the only place I applied steroid lotion. |
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| Food flare. Right after shower. SO itchy. SO painful. |
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| SAME DAY! With makeup! |
601
604
605
606
607
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| My solders just decided to fall the eft apart. They HURT. |
608
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| The next day they’re better |
Month 21 Topical Steroid Withdrawal
Hi guys,
I didn’t mean to go so long without updating. Here is something I meant to tell you about. A day or so after writing my previous post, I developed pompholyx/ dyshidrotic eczema on my hands and feet. I’ve had it on my hands once in the past, to which the GP misdiagnosed it and told me I had scabies (lolwot?) and of course it wasn’t, though that’s a story for another day… It was this bubbly eczema stuff which went away with steroids, but of course that was before my steroid withdrawal so I panicked a bit this time knowing I might be in a bit of a pickle.
I’ve had to really up the contrast for you to see as it is ridiculously difficult to photograph.
Basically I was given antibiotics, which did their job of clearing up the infection and was told to restart my Ciclosporin to control the rest of my skin and to help the pompholyx and that was that… Although of course it’s never that. The pompholyx buggered off but the infection came back a few days after finishing the course. Urgh!!!
I rang up my dermatology nurse on Friday just to let her know it had come back and she wanted me to see someone, however there was no one available to see me and I didn’t want to resume the antibiotics so decided to try something different. For the first day or so I did what I normally do and let my skin dry out to cease the infection from spreading. However it was so unbearably painful that I needed to try something. I filled the sink up with water, epsom salts and a few drops of tea tree oil and used a face cloth and just planted it over my whole face. It was fine until it all dried out again.
Later on I tried just putting tea tree oil straight onto a damp face cloth. Never again. Oh my good God! The pain! It’s definitely one that needs diluting.
I then came up with the idea of mixing a few drops of tea tree oil in with my white soft paraffin, and sparingly applied it to the infected areas. It left my face a bit red but a bit later it had calmed down my face significantly and I was starting to peel all over. I repeated this all weekend, mass shedding occurred, and low and behold the infection has gone! Hurrah!! I’m still left with some spots and redness and stuff but as it isn’t a systematic treatment, I do expect it to take a bit longer. I’m so chuffed though.
From now on I’m going to be adding drops of tea tree oil to my emollient when I need to use it.
Three cheers for tea tree oil!
Also apologies for those who have emailed me and gotten no reply, I’ve been pretty much AWOL and moping around feeling sorry for myself. Hopefully I shall be back on form soon.