Thank you so much for following me on this journey with PMR/GCA.( Diagnosis based on symptoms).I still have ongoing headaches, scalp tenderness and developed some jaw claudication a few days ago, so I am now taking sixty mg. of Pred. My fevers and night sweats went away a few days ago. My PMR symptoms are gone.
I was just approved for monthly Actemra infusions , most likely for 18 months. My rheumatologist says this will allow me to reduce my Pred much sooner.
The possible side effects to me are frightening ( diverticulitis, MS , possible carcinogen, pancreatitis, liver disease).
Not treating this, nor being on high doses of Pred is also frightening.
One of you responded by saying why not take Actemra if you have the option? Is that the general opinion?
I have fortunately been healthy all my life, and generally active and so this has been an interesting journey. I am still biking and walking, and intend to try fasting one day a week to hopefully knock down the inflammation.
I value your thoughts. I can still say no to Actemra.
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Bummed24
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I have taken Actemra for 9 months now whilst on 5mg Prednisolone and have not had any side effects. I can’t say that it’s made me feel so much better but I’ve not had any flares during that time.
I had Tocilizumab for 2 years and it made me feel better than I had done in years! Obviously it was the correct drug for my PMR/GCA-LVV, but isn't as successful for everyone. It all depends on whether IL6 is causing your inflammation.
I would say give it a try, as you should be carefully monitored for side-effects with regular blood tests and you can stop it if necessary.
In England we are limited to a year's treatment (I had 2 during the pandemic), but that could change soon - if so, I would go back on it tomorrow!!
It is terrifying when starting pretty punchy medications with side effect lists a yard long. You can feel like you’re between the devil and the deep blue sea. I remember it with high dose Pred and also before chemo. With chemo I had a scan and could see the lump and a biopsy said it all. With GCA, without a positive biopsy or scan it felt like an educated guess. This makes one feel that yard long list of side effects is too much of a negative with so little evidence. I think your symptoms aren’t that atypical to be honest and if your Rheumy is that doubtful they wouldn’t be going down this route. I guess I would be telling myself that unlike Pred I can just stop it if I want.
They won't drop the pred dose overnight - they will taper it slowly and pred is the medication that is known to work. That is why they start patients on both. Actemra can take a few weeks to build up its effect, pred works immediately so you are covered in that interim.
There are occasionally problems with Actemra - but there are with all drugs - and they are rare.
I felt the same way starting pred and later Methotrexate…both of which have benefitted me with few side effects. You won’t really know how your body responds to it until/unless you try it. Everyone’s response will be different, however hearing about other people’s experiences can provide perspective. If it caused side effects I believe you could stop it promptly (unlike pred that must be slowly tapered down).
I can’t take Actemra as I already have diverticulitis and it’s not approved for PMR in Canada. But for what it’s worth, I would have tried it as a steroid sparer (over Methotrexate which is essentially an RA medication), especially if it was covered by our benefits. Kevzara, approved in the US for PMR, is also attractive, but alas the location, cost and pre-existing conditions prevent from being a viable option.
In the end it is your decision to make (perhaps with your physician). Even if you don’t choose to take it, it’s nice to know you could.
My rheumatologist presented it as an option, as he called it shared decision making. My primary doc indicated she probably would try Actemra if she had to decide personally, just to avoid the high Pred dose. And like you and others mentioned, Actemra doesn't need to be tapered, so it could be stopped, if needed. Good to know.
”shared decision making” and discussion of options with our doctor(s) is a great approach. Indeed you are a team working together to address your health and wellness. You are an expert in your body/symptoms and they are experts in the field of science and physiology. These types of connections foster good outcomes (in my experience).
One of the things my rheumy emphasised in the paper Treat to Target for GCA and PMR - trouble is, it needs a doctor who is confident enough to be challenged without having a hissy fit ...
I was diagnosed with GCA (had the same symptoms headache, hair hurt, minor claudication) in January 2023, started on 60 mg Pred and in February 2023 started Actemra. I was so sick I really didn't study side effects - only wanted off Pred. Sept. 2023 (night sweats, 2 hrs. of sleep etc.) I took my last Pred and have continued on Actemra till today Feb 11/24. January 26 I had a Pet Scan and it seems my GCA has resolved - HURRAY - for now. One comment was that I had "Uncomplicated Diverticulitis" - have never had that before and I'm feeling good (except for fatigue but I think that is going to be a life-long situation) I will be seeing my Rheumy later this week to discuss the Pet Scan results and what happens going forward if I relapse. Once I got used to using the Actipen properly I really felt that Actemra was my savior.
Unfortunately it seems all drugs to make us better also have nasty side effects. Only you and your Doctor can come up with the right decision. Good Luck.
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