PMR treated with biologic Actemra in US. Any of you have tried this one? My doctor is inclined in me starting this medication. I was able to stop completely Prednisone, only to begin again three months later. I had normal ESR and CRP for two years. Now it’s elevated again, though not a lot. Currently on 5 mg.Dr asked to stay in 5 for next six weeks.
Opinions!?
I doubt you’ll get that many replies on this, Actemra isn’t authorised for use in UK for PMR, so it will be mainly patients from your side of the pond with experience, with the exception of PMRpro who lives in Italy. She will be along shortly.
Guess photo is one of your creations -very ‘flower-power’ influenced 😊
Hi! Thank you! Yes, only in US. I’m very hesitant to this new medication but been on Pred for 6 years now. Haha! The pic is actually an AI creation from a friend of mine.💐
No personal experience, it hadn’t been approved for GCA in UK when I had GCA - in fact the trials were conducted just after I’d stopped Pred. Here it’s only given for a 12 month period as that all the trial covered- and like many medications, it works for some, but not everyone.
Picture is cheerful, just what we need here in Dorset today, woke to a very wet and windy day 😳…
Hi Alliswellforever, I live in Australia where Actemra is prescribed for GCA/LVV, but not for PMR. Here, we can only have it for 12 months, as is the case in the UK, but I have managed to achieve an arrangement whereby it is subsidised by Roche, and therefore I have now been on it for several years. I have both PMR and LVV and I have found it a life-changing drug. It enabled me to taper off pred completely, and then I began to taper off Actemra. I got to 4 weekly jabs, stretching from 2weekly to 3 weekly, where I remained for a couple of years, but when I tried to taper to 4 weekly, I relapsed after the 9th at 4 weeks. I had no symptoms, but blood tests showed that the inflammation from LVV had returned, but we are pretty sure that the PMR is still in remission. I am now in the process of tapering from 25mgs of pred (to get the relapsed LVV under control), and I am down to 10mgs pred, with weekly Actemra jabs. So, bit long winded but suffice to say, Actemra worked for me. Only side-effect was neutropenia, which was corrected by stretching the Actemra to fortnightly and then three weekly. Things only when awry at 4 weekly jabs. Go for it, if you feel happy and your doctor is keen.
I am on Actemra for PMR - I'm not in the UK, I live in Italy. It isn't approved anywhere for use in PMR so not sure how the US insurance regards that. My rheumy decided there is also a component of inflammatory arthritis - so it isn't a problem.
I started it because I was stuck at well over 15mg after an awful few years. I have had PMR symptoms for about 20 years and been on pred for 15 years. My rheumy never expected me to get below 5mg even with Actemra as the adrenal factor is likely to be pretty evident. In fact, I got to 7mg but can't manage on less. At 5mg I am very aware of adrenal insufficiency but at 6mg after several weeks I have bicep pain that stops me doing anything with my hands which isn't very practical!! At 7mg pred and 2-weekly Actemra injections I am completely stable.
The fact you got to zero but had to start it again 3 months later suggests to me that the autoimmune disease activity underlying your PMR symptoms is still there but at a very low level. Even 1mg may actually be enough to manage the daily amount of inflammation being created - and your problem at present is actually that there was a build-up of inflammation over those 3 months which hasn't been cleared out properly. You don't say how long you have been at 5mg but the lower the starting dose, the longer it will take to clear that out and until it is "spring-cleaned" you will struggle.
Personally, I would want to try with pred first since you have got to a very low dose on your own before. All Actemra is is a very expensive, heavy duty biologic steroid sparer - it doesn't cure anything to do with the ongoing disease activity. It is a different way of managing the inflammation. GCA and PMR both probably have at least 3 different mechanisms that create the inflammation that causes the symptoms. Actemra works for only one of them. If, like at least half of patients, your PMR involves the others, you will still need some pred to keep that under control so you don't relapse again. It has its place - but personally I don't think that is for someone with "just" PMR who is already at a relatively low dose of pred since there is also the return of adrenal function to be considered after 6 years on pred. It is a very heavy-duty drug and can have some hefty adverse effects - including diverticulitis and that can become very difficult to manage if it is a problem for you.
I'm not saying it shouldn't be considered but I think optimal use of pred should be attempted first since you have got to such a low dose before.
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