This is my second time with GCA- I tapered prednisone slowly over the last 5 years without Actemra. My TAB was negative, but was treated for GCA/PMR.
Last summer (after being completely off prednisone) I had several amaurosis fugax incidences, as well as jaw and ear pain). A positive temporal biopsy was found this time. So I went up to 60 mg prednisone. Now I’m at 10 mg prednisone and am just starting Actemra. My question is how fast can I taper prednisone with Actemra?
PS: I feel like the PMR never came back though. I had no PMR symptoms this time around. Would that be possible?
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Pamk1949
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My rheumy says to be patient even with Actemra - for some people it takes at least weeks and up to a couple of months to start working. In the clinical trial, pred was tapered at a rate of 10mg every 2 weeks in all patients from the start.
I have to say - If I had got to 10mg pred without I'd not be enthusiastic to start Actemra - bit late IMHO! Now the limiting factor is the return of your adrenal function after being suppressed at the high doses of pred and that is dependent on time - the Actemra doesn't have a role in substituting for the pred.
You have also to remember that Actemra only works to get half of patients entirely off pred. There are 3 possible different mechanisms involved in the production of the inflammation in GCA and Actemra only works on one of them, the production of IL-6. If your GCA involves one or both of the other two, you will require some pred to control the inflammation due to them and needing 8-10mg pred is quite usually for those patients. So really, it is impossible to say how fast you will get through that last 10mg, if at all. Don't let your doctor browbeat you into reducing too quickly nor insist that the GCA can't flare if you are on Actemra - yes it can.
Thanks, PMRpro. Your advice is priceless! Yes, I probably should have started Actemra sooner—it was a fight with the insurance company that took a while. Side effects were on my mind as well. I’m now on my 3rd weekly injection, and on 10 mg prednisone. My goal is to get down to a reasonable amount of prednisone (not off completely).
I’ve always been able to taper well, probably because I’ve learned to do it slowly like this site has taught. I know everyone is different, and it’s up to the illness to decide what pred level to settle into long term — just want some guidance for tapering below 10. Should I even bother with Actemra then?
There is no answer to that - without it you MIGHT get stuck at 10. But even with it there is still the possibility you might get stuck - and the reasons are the same really.
Thanks— just had a reply from my rheumatologist—she wants me to drop to 7.5 starting tomorrow. Does that seem right? Sounds scary to me, but is that normal with Actemra?
As I said before - some rheumies think you can. Mine doesn't and I know others who agree with him, And from 7.5mg you must get her to let you go slower so your adrenal function can catch up.
Hi, I've been on Pred and Actemra since 2019, August for the Pred, then October for the Actemra. Maybe not helpful, but every single one of us is so unique. I started on 125mg per day of Pred with no drop in my CRP or Sed rate, hence the Actemra. I was on 80 for a long time but couldn't get below 40 mg and I have been working on tapering from 40 since December of 2021. I am now at 4 mg and tomorrow will go to 3.5 mg!!!! My schedule says I should be off by July, but my GCA may say differently.
What does your rheumatologist say or think? I don't think anyone can predict, Pam; it is tapered slowly to avoid any flare. The Actemra does help for sure. I was misdiagnosed for almost a year and only found it was GCA the hard way. Looking back, I think I'd had it for a few years.
Since you had so many incidences of amaurosis fugax, I would say you are fortunate to still have your vision, I lost the vision in my left eye. There is no success in being off prednisone if you wind up with impaired vision, so please be patient and taper slowly. I'm so grateful for Actemra and have had no side effects. I wish you well!!💞
Thanks Grammy80! Yes I’m really lucky with keeping my sight. I’m sorry about your vision loss. But good to hear that Actemra is helping you with the other eye. I know I’ll always be on some dose of prednisone, just hoping it would be a lower dose than 10. You’re right, no prize for getting to “0”.
Sorry for the late reply; having some health issues...not GCA happily. I was told 'flu' a few times and sinus issues. I had pain up the back of my neck, really intense, and couldn't get rid of it, headaches, side of my head and jaw hurt...those were usually the sinus diagnosis. Plus, I just felt that overall 'drag', was weak. It was sort of like having the flu with facial and neck pain. Sadly none of the Drs. picked it up.
Hi there … I have GCA, on Pred since August 2020 and TCZ ( your Actemra ) since August last year. Currently at 5 1/2 mgs Pred. Am reducing by half a mg every three weeks. Have to say feel rubbish most of the time … from everything I read on here I guess it’s because of the adrenals not functioning yet, but am still very unclear how/ when that’s going to happen. After 6 months on TCZ I can’t honestly say I’ve noticed any difference, at least in the way I feel, but who knows what’s going on in ways I don’t register?Good luck.
Just a word of encouragement...I thought the tired days would never end. Because of other circumstances I wound up being on 4mg for about 6 weeks and today cut to 3.5mg. BUT, my dog tired days have finally gone. I'm feeling like any 82 year old. There's hope!💞
I’m so grateful for this discussion. I was diagnosed with GCA – PMR in May 20 20 and with a couple of setbacks like hip replacement surgery was down to 7 mg of prednisone when I had an episode of double vision last week. My rheumatologist put me on 40 mg of prednisone and is strongly advocating Actemra, which she has been doing since the beginning. So far I’ve resisted, but the hip replacement revealed vascular necrosis, which is a side effect of prednisone. Yet the side effects of Actemra are worrisome and if it hadn’t been for the hip replacement surgery, I’d be on 6 mg without Actemra. Good luck, PamK1949! Please stay in touch and share your experience with us.
Wow, vascular necrosis—I had to look that up. I never knew that pred would cause that. I hope things get better. I understand your frustration with Actemra side effects. Part of the reason I started so late. But I don’t feel any side effects so far —after 3 weekly injections anyway. Take care…
Thanks for your reply, PamK.. I’d like to know how it goes as you proceed with Actemra. I wish there were more first hand accounts on that medication on our forum! Big decision.
The major reason why there isn’t more first hand info is because in the UK [where the charity is based and most member are from] Actemra/TCZ was only authorised for use with GCA [and not PMR] in 2018 - and then only for a 12 month period, plus strict restrictions apply.
At your level of pred, with TCZ, I was told to reduce more quickly - 1mg every 2 weeks. I did actually get away with it for a little while because the TCZ was keeping inflammation at bay. But sooner or later you will the adrenal issue, and that will probably slow you right down, because TCZ does not help with that.
Thanks Sharitone. I don’t think I’ll get off of prednisone completely—just to maybe a lower maintenance dose. Who knows what that dose will be! You’re right TCZ doesn’t help with adrenals, and I just learned from PMRpro that it doesn’t prevent flares! ( I don’t think my doctor knows that)
Sorry no experience with GCA,i have been on Actemra for over 3 years and managed to come off pred after a year using the slow and steady method.Did not have any problems reducing.Don't rush your tapering take it slowly,good luck.xx
Did you continue on Actemra even though you’d gotten off prednisone completely? Is the decision about how long you’ll continue on Actemra made based on your Sed and CRP rates? Has your doctor given you any indication of how long you’ll have to remain on Actemra before you can quit? Thanks for any information you can give me, scottygirl.
I was never on Actemra the first time I had GCA/PMR. I tapered for 4 years slowly without any flares, with exception to knee problems once in a while which Dr said was not a flare of PMR . After almost a year in July 2022 GCA returned, without PMR. Now I think I tapered from 60 to 10 nicely in under 7 months. Maybe wondering if I really need Actemra? I wish there was more guidance, but I understand Actemra is new. Not really trying for 0, but what’s a good number?
Yes i did and get a Infusion every 4 wks.My rheumy who is a fab guy said there is no time limit to how long i am on Actemra.I olso have inflammatory athritis.xx
I tapered from 50 mgs of Prednisone in August 2022 to 0 in January 2023. Started Actemra in August 2022 thinking it was helping. Flared 2 weeks after stopping Prednisone and taken off Actemra as it was not working for my inflammation. Actemra gave me false inflammation markers in my bloodwork. A Petscan showed inflammation. Started Methotrexate in January 2023. My rheumatologist has put me on a slow taper for at least the next 24 months.
I would go so far as to say your doctor is not fully conversant with the use of Actemra. For a start it only gets half of patients off pred. Actemra is highly specific for one mechanism of inflammation, production of IL-6. GCA has at least 2 other pathways for inflammation that Actemra does not work for and they are found in half of patients - and pred is required to manage that inflammation. It cannot be expected that Actemra deals with that but it DOES reduce the amount of pred those patients require. It also takes a great deal longer than 4 months for some patients to get off pred and in the meantime, Actemra has not cured the disorder, it too is also a management strategy.
hello PMRPro … Please can you illuminate for me the three GCA inflammation pathways you mention… in other words, how can I find out if I have the appropriate one with which to benefit from TCZ, or not? From what you say, it could be a waste of time (and expense to NHS) if one doesn’t happen to have the “right” one? Have I understood that correctly? Many thanks, and sorry if you’ve explained this a dozen times before… Karen
ALL patients who have GCA will benefit because they ALL have some component of the IL-6. Some, about half, will get off pred altogether as that is the only one they have. The other half have the other two involved and will get to a much lower dose of pred once the IL-6 component has been removed. The primary aim is to reduce the amount of pred taken over the lifetime of the illness - and everyone with GCA who is able to take TCZ will need less pred in the meantime. Of course - since TCZ doesn't CURE the autoimmune part of GCA, the rather silly limitation of its use to just one year in the UK means there is always a risk of relapse when it is stopped.
My rheumatologist has several hundred GCA patients on Actemra at the moment. Far more then 50% have been very successful with Actemra. I happen to be one of the unfortunate ones. As you are well aware, we all react differently to different medications/biologics.
The figures I quoted are the figures quoted in the clinical trials and international documentation. It's hard to believe ANY rheumatologist in any country has "several hundred" patients on Actemra. It is when all is said and done a rare disease.
Thanks for your reply JuneWalker. Sorry to hear about the flare with Actemra. Are you on prednisone now? If so, what dose and tapering plans do you have for the next 2 years?
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