TCZ (Actemra) effects: high blood pressure & skin bumps/rashes?

[jarn]

Am one of the PMR/GCA (lost sight of one eye) people and progressing steadily on a good path. Initially started on 100 mg of Pred working down to 5 before being put on TCZ. Gradually off the Pred and still on weekly injections of TCZ. During the first weeks of the drug, my feet swelled considerably but after a couple of months, that went away. BP surged and staying high with no side effects so far but am told this is common with TCZ. The last couple of months, noticing very dry rash/bumps on various limbs and no idea where that came from. Another effect of the drug? Body improving as time marches on and think that is a happy result of the drug but curious about the rash. Any ideas?

[pinks33]

Good to know that tocz has helped you to get off steroids and is working well to control the GCA/PMR, apart from your odd symptoms. I am in the same situation as you, on tcz and off pred, and whilst I can't shed any light on your particular symptoms, my experience on tocz is that odd symptoms do come and go. It probably affects everyone differently and you probably haven't seen the end of these weird symptoms, but we are only on it for a limited time, hopefully. But if you are worried about your elevated BP, I would speak to a doctor to see if BP meds are recommended.

[Linda20]

Hi, I've been on weekly Actemra injections for 3 months. I feel it's helping with PMR, and my blood inflammatory markers are all back in normal range. Since starting Actemra I have continuing skin problems on my face, similar to small patches of psoriasis, and general red rash spots. There's been a shortage of supply of Actemra and I had to move to 2 weekly injections for several weeks. Lo and behold, my skin has cleared up, so I'm certain it was the Actemra. I use a general psoriasis cream on the rash. It doesn't clear it completely but it is soothing.

[jarn in reply to Linda20]

Ahaaaa An Eureka moment. Because I would have described it as a psoriasis rash as well, except not scaley or colourful. Just bland bumps so thank you. Does make me feel more comfortable with it and think I will report that to the manufacturer. (they look for input) This rash is NOT irritating at all, just feel it when I run my fingers across it. Yes, my CRP etc have all been reduced over the year and to think that the TCZ is the magic, at least my Rheumy is happy with it. We are fortunate, aren't we? Anything to get off the steroid which was really playing havoc. So, do think that in the early days of TCZ, the swollen feet were also a result of the new drug but it only lasted a month or so. Thank you for sharing that info and aren't we lucky to have this forum. Keep well and safe.

[Linda20 in reply to jarn]

Yes, I do feel fortunate to be on Actemra. Had to meet several criteria, including trying 3 other drugs before my Rheumy could get govt (Australia) approval for me to have Actemra at a subsidised cost. The govt approval has to be renewed every 4 months. I googled "Actemra and face rash", apparently a psoriasis like rash is a known side effect. This forum is fantastic, the sharing of knowledge and experiences has been such a help to me. Stay well 🙂

[PMRpro Ambassador in reply to jarn]

The CRP and ESR fall because of the way that TCZ works - it does NOT mean that the underlying cause of the PMR is no longer active. You cannot use those markers to monitor disease activity when on TCZ and most knowledgeable rheumies use symptoms at present although there are a few options which are emerging. The disease can still be ongoing and causing damage to tissue. Only half of patients are able to get off pred altogether and require some pred, though at a lower dose, to cope with the inflammation caused by other mechanisms besides the IL-6 cytokine. Unfortunately some doctors are blissfully unaware of this and tell patients it can't be GCA when symptoms reappear. Yes it can ...

[jarn in reply to PMRpro]

D'accord. Yes there is certainly the PMR symptoms circulating in my body and my rheumy pointed all this out. She did not indicate that TCZ was for the PMR , it was for the GCA. Thank you, PMRpro for pointing this out. I still keep my Pred tablets in the cupboard but hopefully won't have to pull them out. Your knowledge is invaluable and am still learning more about these diseases as I keep reading all the discussions on this forum. We just keep adding to our trove of info. Thank you

[PMRpro Ambassador in reply to jarn]

It should also work for the PMR since the same mechanism is involved. - there are small scale trials ongoing

[jarn]

Well, you got more info on the side effects than I could find, so good on you. Yes, same criteria my rheumy followed as well but didn't try any other drugs; just had to be tested for various things, then apply for consent. She did renew the Rx after the 1st year but had to apply for that renewal as well. Keeping fingers X'd that we keep plugging along w/o the steroid. Appreciate your input, Linda20.