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.
Thank you! That’s very reassuring . Glad it works so well for you. I will see what would be my next step, because I feel so much better in 5 mg Pred, I don’t know if I really should take the biologics road. Lots to consider🌹
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.
Thank you Pro! I agree on all that too. I was thinking exactly the same about such a strong medication for what I too consider low range inflammation. It’s been at least 3 to 4 years since last I was on 5 mg (I started at 15) I probably was on 1 or 2 for two years, now that I’m at 5 I feel wonderful.haha! It’s still a lower dose but, oh boy, it’s almost a miracle. I was very deteriorated during June, July, August. Now I feel like a different person. It’s not perfect, since there’s always Fibromyalgia around, but definitely more tolerable . The Dr. Mentioned that for Insurance she will put RA seronegative ( which is what every other doctor I have seen has told me I have) They are obsessed with the idea of me having SN RA. I have absolutely ZERO RA symptoms in hands or feet. But since I’m in the younger side and also I’m Hispanic ( origins in Spain) and this disease is more Northern European, they can’t seem to fit me under the description . So glad you’re stable now. You had it very hard. 😔
I suspect a diagnosis of seronegative RA is sometimes a shorthand for one of the forms of PMR because sometimes they DO see signs of arthritis - I now have seroneg inflammatory arthritis on my diagnosis - on the one hand BUT also a get out so they can try other things without difficult paperwork and refusals to cover the cost, whatever country it is in. Personally I couldn't care less what the label is as long as they offer me medication that works well for me - and at present I'd say it is nearly ideal. I hope it stays that way,
PMRpro, you mention here bicep pain at 5mg and I wonder if I could ask further. I don’t mind opening a new post, if you believe this topic is of widespread interest. I’ve been at 5mg for some time and have also developed bicep pain. Research suggests it could be the long tendon (I think I’m remembering right), but it came on as suggestive of an injury although I had done nothing more than regular gardening and exercise. Now I have it in both arms. If I do any ‘heavy’ lifting, which would not be all that heavy for most, I can hardly hold my coffee cup for several mornings. The pain can also radiate through the shoulder and into the chest. I read that PMR patients can be prone to this long tendon tendonitis, but is this similar to your bicep pain and what is the true culprit? Thanks dearly for your opinion.
Probably similar to mine and since it is gone at 7mg and there after a few weeks at 6mg, my rheumy is perfectly happy it may be the inflammation of the still active PMR and it needs enough pred. I'm also on Actemra but it is known it only deals with one underlying cause of inflammation - the tendinitis is obviously one of the others!!!
Thanks to everyone who has commented on Actemra. My rheumy says he may start me on Actemra in 2025.
"PMR probably has at least 3 different mechanisms that create the inflammation that causes the symptoms. Actemra works for only one of them. " This statement caught my attention. I know interleukin-6 is one of them. Do you know what the other two are? Thank you for your expertise!
Hours later: Please disregard my comment about my potential taking of Actemra. My rheumy may start me on Kevzara, not Actemra.
In GCA (and therefore most likely also in PMR) in some cases the inflammation is due to other cytokines. It is terribly complex as this shows
ncbi.nlm.nih.gov/pmc/articl...
and I struggle with it, never mind someone with no scientific background at all! T-cells are involved and they produce differnt inflammatory substances which Actemra doesn't work for. About half of GCA patients do respond 100% to Actemra but even so, it doesn't stop the disease process, it isn't a cure.
I'm glad you supplied the link because it certainly shows the complexity and truly satisfies my curiosity. I stopped wading through all the verbiage when I saw the wonderful chart. A picture truly is worth a thousand words. Recently, I have found sites that advocate Actemra for RA as well as PMR!
If my doctor does start me on Actemra in January, I will post on how that is working and any side effects. Thank you PMRpro for the knowledge you share with us.
Later post: I will not be taking Actemra! Sorry about the confusion I may have caused. I just looked at my discharge summary which states: After winter 2025 if symptoms are lingering then I may discuss a medicine called Kevzara vs. Methotrexate as possibilities to help get you off prednisone. They are approved for PMR as steroid sparing agents."
Actemra was developed for and approved for RA in 2010. It is approved for GCA but not actually for PMR.
Actemra isn't approved anywhere for use in PMR. Good to know.
That isn't because it doesn't work in PMR - it does but the makers didn't apply for PMR approval because no adequate clinical trials were done specifically for PMR and that is part of the approval process. That then tends to influence the reimbursement process and it is expensive - like all biologics.
I'm kind of vitalized by that psychedelic picture...awesome.
I take Actemra, and have for five years, along with Prednisone for Giant Cell Arteritis. In the beginning, they were hesitant to give it to me because I had a history of bowel issues. I started weekly injections in October 2019 and have had Zero! side effects.
Two friends of mine in the States take it for PMR. One gal has stopped doing it weekly and does it every other week. Every so often, she has to return to a weekly regimen. Sure, it is expensive, but that is Big Pharma for you!!! My cost is only $40 for January's supply each year, and then it is -0—because I've met my insurance's out-of-pocket expense guidelines.
Recently, I had an unsuccessful trip to zero and questioned my rheumatologist about the actual treatment benefit of Actemra. It is his opinion that it does assist in bridling the inflammation in my case, and I will probably be taking it for life, plus pred. If it works, you have nothing to lose by trying it. I think it is great you have a health provider who considers it!! Be well. I'm going back to the picture! 💞
Haha! You’re funny! 😍 thanks! So glad it’s been so good on you! My new Dr. Is very up to date and she’s so kind, in contrast with my other 5 drs. She insisted that I continue on 5 mg Pred for six more weeks, and then decide on Actemra. Will see how this develops and what would be my course of action. Be well you too !!🥰
I like her already......saying stay on 5mg of six weeks....she thinks outside the box and really is paying attention to symptoms~! I've never eaten a 'shroom' in my life..., but wow, I think it would be like that picture.........🌈
I'm in Australia. I was on Pred and had to taper off as it was causing my eye pressures to increase (family history of glaucoma). I have been on 15 mgs of meth but I reckon it has done nothing (no longer need to take now that I'm on Actemra). I have been taking Meloxicam for the pain and had to break the emergency glass and take some Pred recently as could hardly move and in lots of pain. I have just been prescribed Actemra - took first dose yesterday. I will see how it works. I am hoping it is the magic bullet for me as I have had side effects to everything else I have taken orally. My rheumatologist thinks I have some aspects of RA in conjunction with PMR. I am one of those zero negative people, but my symptoms and pain tell another story.
hi, hopefully it will help you. I’m still not taking Actemra. Not yet. Will see what happens. Best!✨
Actemra 
Finishing with Actemra
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