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Anyone with skin issues due to Stelara?

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Posted 11/2/2021 4:03 PM (GMT 0)
Posting on the UC side for more input)

I have a history of PG which has (thankfully) been in remission for years due to IVIG treatment.

Friday evening, hours after my Stelara injection my PG scar on my left leg started to burn and was prickly, Every once in a while during the dryness of winter it happens. I use topical tacrolimus for a night or 2 and it goes away. This time it's different. Yesterday the scar was burning on fire. I was limping it was so painful. The scar itself hasn't changed though, it's not red nor does it look like the skin is going to open up. Anything that touches the scar; like my yoga pants increases the intensity of the burning.

Perhaps related - over the last year I've had a burning sensation on my left shoulder. It comes and goes. It's not shingles, but my doc couldn't find anything wrong . My doc prescribed gabapentin which I really didn't take very often because the pain disappears quickly. Well this morning my shoulder is on fire again after 4-5 months without any pain.

Could these issues be related to Stelara?
I'm out of drugs to take and Stelara has me in remission - so I don't know what else I'd do if this is a reaction.

Thanks everyone,
Posted 11/2/2021 4:59 PM (GMT 0)
It gave me a rash called tinea versicolor. My dermatologist gave me a prescription anti-fungal cream and 3 days of diflucan and it cleared up. Stelara did nothing for me so I don't take it anymore. But yeah, it can cause skin issues.

Edit: You've been on Stelara for 4 years and this issue just started? My rash happened within days of first starting it. I'm not sure if this would start years later or not. Hopefully you can find a solution.
Posted 11/2/2021 6:47 PM (GMT 0)
Thanks Sara14....I’ll look into that. Only side effect I’ve had was yeast infections in the 3rd year. That cleared up. Sometime I’m nauseated or headache but remission is fantastic.
So far no rash. Scar appears “normal”, so does shoulder. It’s just burning, and of course I’m fearful about the skin re-opening. That would not be pleasant.
Posted 11/3/2021 10:53 AM (GMT 0)
I developed what looked to be palmoplantar psoriasis after the loading dose, which has now cleared up. I'm about to have the next dose so not sure yet if it'll happen again with a lower dose.
Posted 11/3/2021 1:39 PM (GMT 0)
Yeah, what you described isn't tinea versicolor. I was just chiming to say I also had (a different) skin issue on it. Totally different, but I've been getting quite a few UTIs on Xeljanz, but I also have a new partner so I don't know if it has anything to do with Xeljanz really. These med side effects can be frustrating and unnerving sometimes.
Posted 11/3/2021 1:40 PM (GMT 0)
P.S. I'm happy you're in remission still!
Posted 11/3/2021 8:23 PM (GMT 0)
I sometime have a little hot spot above my ear and connecting to my scalp. I never had it before until I started Stelara- I’m not sure that is the cause. Every time I go to the PCP or my GI it is gone.
Posted 11/4/2021 2:25 AM (GMT 0)
UB,

I am on Remicade so not the same med., But when my PG scar is "acting up" It feels like something stung me, it feels hot on the inside and it's very sensitive. Sometimes I will get a very small blister on the scar tissue--but so far it hasn't expanded. It's happened right before, after and in the middle of the infusion timeframe... So I am unable to discern a pattern.

My dermatologist stated that some individuals do have those prickly warning sensations prior to PG activating in the same area again, but he has also had patients on anti-tnfs that have that same symptom right after they take their meds. He thinks it could be because the anti-tnf is relieving the inflammation and could be preventing it from recurring.

So far...knock on wood...I haven't had my scar tissue open back up except when I last had surgery and my incision went right thru the middle of the PG area. The hot stinging sensation happened just prior to it opening up. The PG area took on the same size as it had previously been.We allowed it to heal from the inside out. It healed in about 6 months that time. (12 months the previous time)

So unsure on if your medication is causing it or if it's your body giving you signals. Have you seen your dermatologist?

Clo
Posted 11/4/2021 1:05 PM (GMT 0)
Hi Clo- nice to hear from you. I'm sorry that you too suffer with PG. This is such a hideous disease!!
I don't have a derma, since I've not had PG issues for years. I haven't had a response from my GI to my email, which is odd. He's usually on top of things.

I agree the prickly sensation is usually a warning sign. I don't know if this is directly related to Stelara or not but it seems coincidental at the very least. This morning I've got a burning sensation on my inner left thigh. Interesting it's also the left shoulder. I'm wondering if I should take an antihistamine? Maybe this is some kind of allergic reaction. The skin is intact and thankfully does not look red; looks completely normal. I have IG on Monday so I'm hoping that puts and end to this.

What do you use to treat PG? IG saved my life - as nothing worked and my holes only got bigger and deeper.
Posted 11/10/2021 5:09 AM (GMT 0)
UB,

When I had PG, we treated with salt water soaks.. (burned like crazy,) and moist heat. Mine went from a blister to a 3 x 4...?? Maybe alittle bigger.. hole over a couple of months. It took a year to heal. Insurance would not pay for IG or anything besides admitting myself to the hospital and having steroid injections into the wound. So we tried a different path and it worked out for me. One if the scariest most painful things I have endured. My last surgery, the cut went right thru the PG area. It broke wide open after they sent me home. I once again did the salt water baths and let it heal on its own. It's closed now. Surgery was in April. I hate Crohns with a passion.

Did you try taking Benadryl to see if it helped,?

Clo
Posted 11/10/2021 2:15 PM (GMT 0)
Wow. Clo! I hear you. It’s extremely traumatic!

Yes, I think it’s some kind of allergic reaction. No more burning since I started benedryl. I’ve been itching like mad....even my eye balls. Hopefully that’s what this is....I don’t think it’s PG & less of a worry. Fingers crossed.
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