Opinions on steroid induced flares
Hello,
Apologies for the lengthy post but i could seriously use some advice and support regarding my situation. My flares didnt begin until I started seeing a derm 5 years ago. I recognize it could be a coincidence but its difficult to convince myself of this given how this has all gone down. By no means is this post meant to redirect anyone from seeking professional medical help. This has been my personal experience and Im just hoping some of you may have experienced or seen something similar and can advise on how to proceed.
I first went to a derm for what was initially diagnosed as seb derm on my face and scalp. During that first visit they asked to do a full body exam. When they did, they saw 4 plaques on my body, 1 on each knee and elbow in addition to the seb derm. Up to that point, roughly 15 years, the plaques had never grown larger than maybe a nickel and would fade and come back. I never had any symptoms with those plaques or had ever suffered flares. The derm found this odd, and the way he questioned my responses seemed like he thought i wasnt being truthful with him. Regardless, I left that day with prescriptions of ketoconazole shampoo, keto and fluticasone cream for the face(2 weeks on, 2 weeks off) and mometasone liquid also for the scalp plus plaques to be used same as the fluticasone. At this point i wasnt aware of topical steroid side effects nor was it disclosed to me. I didnt really feel like i needed to treat the plaques initially because they didnt bother me but was essentially scared into treating them due to the possibility of worsening over time, PsA, reduced lifespan from potential heart attack or stroke due to inflammation, etc.
At first, treatment was going well. Strict regimen was followed and my face and scalp cleared up wonderfully. However, i noticed that the plaques would go away during treatment but would come back during the 2 weeks off and would be slightly larger. I continued this treatment plan for about 6 months as advised. When i had my follow up, the seb derm was pretty much gone but i explained what was happening with the plaques, now roughly the size of half dollars. I was told thats just how P is, sometime it gets worse. The response was to prescribe a stronger steroid, clobetasol, for the plaques at 2 weeks on 2 weeks off.
Not long after using the clobetasol i started developing red spots in the vicinity of where i was applying. They started as itchy little pin prick marks and over a period of weeks grew much larger. I decided to schedule an appointment with the derm to discuss this which was once again shrugged off. I was also told to start applying the topicals to the dozen or so additional spots that had appeared. The red spots were not scaly during this time. Just red, raised, and slightly itchy. Unfortunately, the topicals would not do anything to the red spots that were beginning to change in shape and size. On top of that, where i was applying the topical, more would start to appear in those areas as well. Fast forward a few months and i was covered from trunk and arms to legs with probably a hundred or more of the spots that ranged in size from a peppercorn to a quarter. Another follow up yielded the same response except this time it was advised that its time I considered a systemic. I was fed up with being ignored about my concerns with past treament plans and since i had done nothing but got worse decided no to the pills and that it was time for another opinion. 2 dermatologists later i was met with the same responses I had been getting. Everyone knew each other and couldnt believe that the other had possibly been negligent with my treatment. Even knowing that a biopsy had yet been performed.
At that moment I had decided enough was enough. I stopped seeing derms, stopped treatment, and started going down the rabbit hole.
At the time, I was in pretty decent shape. Mostly vegetarian diet(wife was vegan), tried anti inflammatory diets, elimimation diets, but the spots kept spreading. I even went to a functional doctor. That ended up being a waste of money but i did get some some extensive blood tests and gut tests done which all came back normal.
Fast forward about a year and all those spots finally went away, but i still wasnt back to what used to be normal. The original plaques on my knees and elbows were much larger, always present, and were some times painful. I work heavy industrial jobs so im always on my knees, laying on my different limbs, elbows etc. Also, my face was completely wrecked with seb derm and my scalp also took a turn for the worse with what was resembling more plaque-like appearences, especially around the hair lines. I kept up with it the best i could, sometimes clearing up for awhile.
I stayed on this path for about 3 years until this past winter. Out of nowhere the plaques on my knees and elbows began to get very large, about the size of the palm of my hands. They began to crack really bad, some cracks large enough you could probably swipe a credit card through. The pain was almost unbearable and i could barely perform my job duties. I reluctantly decided to go back to a derm(new one). Of course he immediately wanted to prescribe steroids. I explained everything that happened last time and that i wasnt taking topical steroids again and was even told that he finds my "story hard to believe." Coincedentally, 2 of the past derms trained under him and I could tell that he took offense when i explained to him how i felt they were negligent with my treatment. By the end though he conceded and prescribed both vtama and zoryve as steroid free options. He explained how they work, and that they didnt work for everyone so to try one and if it didnt work try the other.
Initially, I was scared to even start treatment with these products. I did my research and saw mixed experiences with both. I held off as long as could but the plaques were getting worse with thickening and cracking so I started with vtama. At first i couldnt tell if the vtama was working and didnt seem to have any side effects that i could point directly to it so i continued treating with it. About 2 weeks in, i noticed improvement. Around the 5th week of use I started developing rashes, once again around the areas i was applying it. The plaques were also still present but had noticeably improved and were almost painless. I assumed the rashes was folliculitis which is a known side affect but I was desparate to get better so i continued to use the vtama as I had read that normally its a short term side effect. Next thing i know, im breaking out into rashes all over my body and more wide spread in the areas i was applying. They also started itching EXTREMELY bad, like poison ivy bad. On top of that, the red "spots" started coming back. At this point, I stopped using the vtama and went back to the derm. I was pushed off to a new location that had opened up and was being ran by a PA who happened to be the original derm I saw from the very beginning who AGAIN disregarded the side effects and began to push very hard for biologics.
I am now at the point of the attached pictures all the way down to my feet and I am MISERABLE. I feel like i am constantly wrapped in a blanket of fiberglass, i have weird almost painful goosebump sensations without the goosebumps, chills, and i am literally getting worse by the day. Nothing seems to help except sitz baths with dead sea salt but even that relief is short lived. Moisturizing creams, petroleum jelly, nothing is helping. I cant sleep more than an hour without waking up for 20 or more minutes and Im at my wits end. I have moments throughout the day where the sensations i described hit really hard and when i look at my body during these moments, areas that were clear earlier now have raised spots, areas that were existing clustered spots and rashy have conjoined into much larger portions of coverage and i overall just feel horrible, extremely fatigued, and some times out breath/chest tighness. It seems that im basically covered in a mixture of guttate, inverse, and plaque and i cant help but correlate all of this to reactions from topical treatment side effects. Im being told that now my only option is getting on a biologic. It is a terrifying choice to me. While the derms are prescribing the biologic because i "just have really bad P" now at about 80% coverage, im feeling like i wouldnt even be at that coverage if it werent for treating it to begin with. Ive known people who legit just naturally have severe psoriasis and it seems like biologics should be geared towards them. I know i need to do something but getting on a biologic isnt something to be taken lightly. Ive scheduled with another derm 4 hours away from this cliquish medical town for yet another opinion. Her practice holds clinical trials and assists in development of treatments. Reviews seem to be very positive in that she actually listens to her patients before deciding on a course of action. This appt is currently 12 days away. I have a biologic waiting for my request to fill. I dont know what to do. Does any of this seem like a typical experience?