Hi everyone, I read the posts everyday and it's a comfort to me to be able to get good information about what is going on with my body, and not to feel alone in this strange situation.
I was diagnosed with PMR & GCA early July, three months ago. What a confusing hell it was. I'm grateful for the Prednisone, which enabled me to walk and get up from a seated position. I've slowly become more active, but nothing like I was before this happened. It's so scary. But this forum has really helped me, so thank you all so much.
I live in California and I know some countries don't allow Actemra like here. It's super expensive! I'm grateful that my health insurance pays for most of it. I've had 5 shots of Actemra, one per week. I started reducing my Prednisone down from 50mg. I'm now at 30mg per day. My temples are just as tight and swollen as ever, jaw sore, hurts to chew--which has been the case since this began. When I lower the Prednisone, I get a headache, but it goes away after 2 days. In your experience, how low can I go with the Prednisone? Can I get off it and just be on Actemra? I have no idea what to expect with the duration of all of this and would love to hear anyone's experiences.
I stay home so much more now. I go to bed super early, exercise less, lay down more. I see life so differently now. I'd love to know how this disease has changed you. Thanks so much.
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potterylady
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Actemra helped me right away. I started it when I was on 35 mg prednisone. I got completely off prednisone 7 months after starting Actemra. I have not had any GCA symptoms since starting it.
However, my arthritis and slipped vertebrae that I have are giving me a tremendous amount of pain. Some days I can barely function. The prednisone masked all those pains. I had some arthritis before GCA but never felt this much pain. I can’t take NSAIDS so it has been very difficult.
Anyway, the Actemra has been great for me. I suffered too many adverse side effects from prednisone.
Unfortunately all of this has changed my life completely. Don’t know if I’ll ever be what was I was before. It’s made me more understanding of what some people endure in this life. Being on this website is an eye opener. I have not suffered nearly as much as what some have gone through
That’s wild how the Prednisone was helping your arthritis too. I’m sorry you have that too to handle. Sounds awful and painful. I’m afraid of what the Prednisone is doing to my body but grateful for being able to function. Sending you love and peace
Pred doesn’t necessarily help OA as such, but at higher doses it masks the pain..not quite the same thing… and done if us have found out along the way. It can deteriorate without you realising because you aren’t in pain.
I don’t have any experience of Actemra (it hadn’t been approved for GCA in UK at the time) so can’t advise how long it will take to get to zero Pred. Would say your 2 days of headaches after reducing Pred are probably withdrawal symptoms.
However, I am concerned at the remaining symptoms you have, and if they have never improved, so should your doctors. Have you discussed the issues?
It’s what everybody fears with GCA, and quite right. For the sake of a couple of weeks. I wouldn’t be reducing….wait until you discuss with doctor. But obviously if things deteriorate or if you are worried then contact.
With the persistence of the symptoms I would be questioning whether you should have reduced so far so soon. My rheumatologist told me to wait a few weeks at least before tapering the dose - and I don't have GCA, I have very long lasting relapsing PMR. Contrary to what some think, it can take some weeks to be effective enough to allow a reduction in pred.
No, you may not get off pred altogether with the Actemra. It works 100% for half of patients, the other half get to a much lower dose of pred, 8-10mg seems typical, but cannot stop it altogether. This is because there are at least 3 mechanisms creating the inflammation in GCA and Actemra only works on one of them since biologics are extremely specific, only working on one thing. If your GCA involves the other mechanisms, you need pred for management of the inflammation due to them.
So it depends and only time will show. But at the present - I think you need to ask to slow down on the pred reduction and possibly even go back a bit if those symptoms persist.
Ok, I’ll stop good down further on the Prednisone. I’ll stay at 30mg until I see my Rheumatologist. I’d love to eventually go down to 10! Thank you for the great information.
You will eventually - but at the start there is no need to rush because if you go too low on pred before the TCZ is working you could make things worse. Once the TCZ is working, you will be able to reduce much better.
Yes, seems to make the most sense. Ty.Pmrpro, do you know if there is a biologic this deals with all three parts of the GCA inflammation? Does toxcifulum (spelling, sorry) the relatively new biologic - deal w all three.
I know that aspirin deal well with il6 inflammation. First time I have heard there are 2 other parts, in this.
No, any biologic only deals with on very specific things and only one can be used at a time. I suppose it is possible a biologic could be developed that had an add-on but there are none at present. Do you mean tocilizumab/Actemra? It deals with the predominant cause, IL-6, but that is all.
I had to have 60mg pred to get everything under control - but it did, and I'm glad you're going to wait for your next appointment before further reducing.
I did manage to get down to 15mg without Actemra, but then came to a stop. However, Actemra has enabled me to reduce much further, very slowly, now down to just 2mg. I hope it works as well for you.
However, the life-limiting fatigue is still there, with a load of muscular pains which are not PMR - I just think they are related, or caused by medication. I hope these will too diminish, but considering the enormous strain that GCA puts on your body, I think I am lucky to be in the position I am in now.
You're right: this illness does change your outlook, and your expectations, fundamentally. It has its good sides!🥴
How do you know that they aren't PMR? Are they due to what is now being classed myofascial pain syndrome? Because that is often also part of PMR although it better dealt with by more targeted approaches.
You're right: I don't really know. Except the rotator cuff tendinitis, which was diagnosed and I imagine is due to pred. And the pain down the left side of the ribs is mainly when I lie down or slump, so I'm guessing that is costochondritis. And the ones round the outer upper thigh I suppose are GTPS.
I suppose I should ask the GP, but when I tried it before I just ended up with morphine patches. I wasn't keen to take them and the rheumy agreed I shouldn't. Nothing's simple!
GPs in the UK can be far too keen on dishing out painkillers instead of looking for the causes! Luckily my rheumy and my GP are very keen on looking for other options.
Getting an appointment with Christian is hard enough anyway!! "Follow-up in 3 months" he says in mid October, "No appointment before end of February" says the appointments lady - and she was surprised it was that soon!!! Just hope the TCZ isn't doing anything untoward ...
I have been on Actemra for 16 months, reducing pred. along the way. I have GCA only and started at 60mg. With Actemra, I reduced all the way to zero pred. over 6 months. But, I did end up having a flare, which was a definite setback. I again was on a higher dose, 40mg, and did a faster reduction with Actemra, but again flared when I got down to 0. So, I am one of those that will need to be on a low dose of pred. while on Actemra. I'm at 5 mg now, actually reducing to 2 mg before an upcoming minor surgery in early Dec. I hope I get to 2mg without issue, and can stay there for awhile, before doing any more reducing. From what I can tell, it's a trial and error kind of thing as to when/if you can get off pred. As for getting off Actemra, I don't know when/if that will be possible at this point. Positively, other than the flares, I have felt good all along, no side effects, and able to do all my normal activities without difficulty. Good luck!
Yes, the symptoms were similar to when I got it initially. In my case, upper respiratory, sore throat, headache, cough, etc. This makes it tricky as it is similar to covid symptoms, as well as other viral colds. You can test for covid, but kind of have to wait it out and see if I get better if I think it is viral. If not, I know it's GCA. So far no new GCA symptoms while staying on a low dose of pred (currently 5mg, reducing to 2 mg prior to upcoming surgery on Dec. 2nd) and Actemra.
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