Struggling to find out what this "rash?" is (was on Inflectra for about 4 infusions)

[bsyde82]

Started Inflectra in September 2019 and have had 4 infusions, the last one being around Thanksgiving. I'd say sometime in late December, I started developing what seemed like a more severe heat rash (I usually get some minor ones in winter) on my left shoulder/upper arm. Then it just spread all over my back. Very itchy. Mostly uniform size red bumps. It's all over but more heavily concentrated in certain spots (like my deltoids/traps), but it's pretty much limited to where a t-shirt covers my upper body. It's also spread to my chest although way more heavily concentrated on one side for some reason. Also all up and down my side/rib cage area.

I've seen two dermatologists, both times leaving very disappointed because they didn't see to have an idea of what it was, nor did they seem very interested in trying to find out. I actually did a biopsy, which apparently brought up many different possibilities, ie it didn't help me much in figuring out what this is. I've used both types of steroid creams, and after a week of the clobestal? it seemed to get better, but then fresh bumps would appear in other areas. The older areas would kind of scab over or just flatten, but still leaving a visual mark, which I'm hoping goes away after some time. I've switched all my soaps and all that. Researching online, it seemed like "fungal acne" matched up with a lot of what I was experiencing and seeing, but the biopsy didn't reveal any fungal activity.

I have to believe it's been caused by the inflectra, the correlation is just too much. So I've decided to stop the inflectra, which is unfortunate because it's actually working, and switching over to entyvio.

Incredibly frustrating (and itchy) since this breakout happened right when I felt like the inflectra was starting to work. Has anyone experienced something like this and had to stop the biologic they were on? And were you successful in stopping the rashes and continuing on another biologic?

 

[Pangolin]

Have you tried an antifungal cream such as Lotrimin Ultra (butenafine)? Alternatively, you could try soaking the area in vinegar (as long as it's not stinging too much) to see if that helps.

 

[my little penguin]

If the biopsy didn’t show fungal and the docs didn’t say fungal it’s not fungal .
Ds was on remicade and got drug eruption rash from it
Over his torso and later face
We were told it was from the remicade but not a reason to stop remicade
He later (8 months after starting ) had two allergic reactions to remicade and stopped it
Since remicade worked so well Gi wise for him he was switched to humira
Guess what no rash
Remicade is murine protein based (mouse) vs humira is humanized and less likely to cause a reaction

can I ask why you would switch to entyvio if you had great results on Inflectra and not switch to humira instead ??
Entyvio takes 6-8 months to start working and a much lower success rate for crohns
(Doesn’t work well for small intestine)
Humira works well for both high success rate
And Stelara works well for small intestine not large

Ds is currently on Stelara /mtx
He has not had the torso rash since switching
Even on Stelara

good luck

 

[bsyde82]

If the biopsy didn’t show fungal and the docs didn’t say fungal it’s not fungal .
Ds was on remicade and got drug eruption rash from it
Over his torso and later face
We were told it was from the remicade but not a reason to stop remicade
He later (8 months after starting ) had two allergic reactions to remicade and stopped it
Since remicade worked so well Gi wise for him he was switched to humira
Guess what no rash
Remicade is murine protein based (mouse) vs humira is humanized and less likely to cause a reaction

can I ask why you would switch to entyvio if you had great results on Inflectra and not switch to humira instead ??
Entyvio takes 6-8 months to start working and a much lower success rate for crohns
(Doesn’t work well for small intestine)
Humira works well for both high success rate
And Stelara works well for small intestine not large

Ds is currently on Stelara /mtx
He has not had the torso rash since switching
Even on Stelara

good luck

GI doc recommended Entyvio although initially he also suggest switching to Humira. I think he advised Entyvio simply because it's less prone to causing reactions, but then it would make some sense if it's not as effective as Remicade or Humira. Thanks for that insight though, I'm still considering which biologic to switch to. In your experience, was switching to Humira pretty seamless in terms of maintaining how you were feeling on Remicade?

 

[bsyde82]

Have you tried an antifungal cream such as Lotrimin Ultra (butenafine)? Alternatively, you could try soaking the area in vinegar (as long as it's not stinging too much) to see if that helps.

Have not, I got a bottle of Nizoral shampoo that I was going to apply but then the derms insisted it wasn't fungal. So I don't know.

 

[Pangolin]

Have not, I got a bottle of Nizoral shampoo that I was going to apply but then the derms insisted it wasn't fungal. So I don't know.

It may not be fungal, but the symptoms are suspicious and tests can't rule the possibility out completely. These things aren't easy to diagnose. Might as well try some butenafine cream and see if it helps--it's unlikely to harm you.

Edit: of course, there's also a very good chance this is an allergic reaction to a medicine, especially if it looks like hives

 

[my little penguin]

My kiddo was 9 at the time he switched from remicade to humira
He is a very allergic kiddo has reactions to multiple drugs and food
He switched to humira no issues at all
No rashes and clean scopes
So clean docs question if he has crohns
After 5 years humira stopped working and he was switching to Stelara
Stelara took 8 months to work
Scope at 8 months showed mild inflammation and he needed steroids as bridge therapy while waiting for Stelara to kick in

no bridge therapy needed for switching from remicade to humira

easy transition

he is 16 now and been on stelara for two years

 

[Lisa]

I've had a pseudo-psoriasis most likely from Remicade, it seems to come and go as it pleases...I try to not use much steroid cream as I get a rebound effect when I stop. Right now I'm pretty clear except a spot on my left ankle of all places....at its' worst, my whole torso was a nasty flaky rash....

Also, look up Gutatte Psorasis - that is most likely what I actually had at one point...although my derm at the time couldn't give me a diagnosis.