Update on skin lesions

[Kt1943]

Hi everyone, just thought I would give update on the serious skin lesions I developed that were unlike the normal prednisone related ones. Sheffield Jane mentioned it could be urticaria vasculitis and my GP thought that the symptoms and duration of the lesions indicated that this is what it is. He did a biopsy but it was not in the first 24 hours so the results were not definitive. He increased my prednisone to 40 mg for four days and the lesions healed leaving behind some patches of purporae. Once I reduced the prednisone new patches of lesions developed on my face and neck (intensely irritating). I got in touch with the rheumatologist who thought it might be an adverse drug reaction so she has halted my Actemra infusions (for which I am very sad). Apparently you can have side effects like this even after months of no side effects. I had also started on colchicine for the constant mouth ulcers so we stopped that which was a pity as it really helped the mouth ulcers. Yesterday they took twelve vials of blood for blood tests so that should show something!! In the meantime I am on increased prednisone tapering back to five mg over the next three weeks. The lesions on my face healed on the current dose of 30 mg. I want to stress that these lesions do not look like the prednisone related bruises as I don’t want anyone to get nervous about those. I wonder if anyone else has experienced anything like this on Actemra. I am hoping to be able to go back on it soon. I will let you know if I find out anything helpful from blood tests. Best wishes to you all.

[PMRpro Ambassador]

Sorry to hear about the confusing mess with medication! I don't think I have had any problems with Actemra so can't help.

[Kt1943 in reply to PMRpro]

Thanks. I haven’t had any problems with actemra up to this point and I really don’t believe it is that. Hoping to go back on it when we sort this out.

[SheffieldJane]

Wishing you all the very best!

[Kt1943 in reply to SheffieldJane]

Thank you! Hopefully we will get answers soon!

[SheffieldJane in reply to Kt1943]

I feel your determination. 🤝

[Kt1943 in reply to SheffieldJane]

😀

[Grammy80]

I'm in the States also ....and have been on Actemra since 2019 and have never experienced negative side effects. Really hope this gets straightened out soon for you.💞

[Kt1943 in reply to Grammy80]

thanks Grammy. I am always encouraged by your posts. I am betting it is not actemra!

[cranberryt]

I am not on Actemra but I have struggled with fungal infections since being on prednisone which require oral fungal medication. But mine are not improved at higher dose of prednisone.

[Kt1943 in reply to cranberryt]

thanks for the info. Hope your infections have finally cleared for good.