Update on severe skin lesions

[Charkha]

Hi everyone. Just wanted to give an update with regard to the severe skin rash/lesions I experienced in November My GP diagnosed it as urticarial vasculitis but my rheumatologist thought it might be an adverse drug reaction (belated) to actemra. She stopped the infusions and had me on an increased dose of prednisone 30 for 5 days, 20 for 5, 10 for 5 days and back to my 5mg prednisone that I had tapered to. I also stopped taking Colchicine which we had started to counteract continual mouth ulcers. She did all kinds of blood tests that ruled out just about everything. The lesions cleared up, so the rheumatologist has okayed doing another infusion next week and seeing what happens. Fingers crossed that there is no repeat and it was the Colchicine. I am very happy that she has agreed to let me stay at the 5 mg prednisone as I am doing well on that and no adrenal insufficiency problems to add to other issues like my MS. Sadly she is moving to another city so I will miss her and can only hope the next rheumatologist is as helpful. Warm regards to you all.

[PMRpro Ambassador]

Good to hear things are improving - and what a shame you are losing your rheumy. A good rheumy is almost worth moving for!

[Charkha in reply to PMRpro]

I agree! She will not be too far away but too far to go for the infusion every month and she can’t order the infusion here. However, she told me if I ever need a consult, I can contact her so that is a blessing.

[jarn]

Interesting. While I was on ACTEMERA, I noticed various skin lesions on my legs/arms (similar to clear dry bubbled skin) and stopped the drug. Haven't had any new ones since then but one lesion still stubbornly remains. I did post about this a year ago but nobody else has noticed. Good Luck to you.

[Charkha]

thanks for this information. Mine were red, swollen, itching with purple patches which sounds a bit different to yours. But I m interested to seee yours were linked to actemra. I will let you know what happens after my next infusion.