I have been on prednisone for PMR for 3 years now. Started with 20 mg and now I stuck on 5-4 mg for a year already. Had several flare ups, still somewhat sore and tense over shoulders and buttocks. In addition I developed carpal syndrome. So my Rheumi suggested trying Actemra to help to reduce prednisone. I am not sure if it will help. Any advice?
Prednisone tapering and Acterma: I have been on... - PMRGCAuk
Prednisone tapering and Acterma
That is interesting. Although I am on 8 mgs of Pred it is gastric resistant and this could have a bearing on the absorption rate. My Endocrinologist wants to see me, when I get down to 5 mgs. I am in a state of achey exhaustion all the time. Did you ever feel well on Tocilizumab? I did on Pred. It’s all very confusing.
The rate of absorption is immaterial - it is the total amount absorbed that matters.
I just wondered if I was absorbing less overall, somehow. I am finding it hard to read my symptoms.
That is the whole point of the tapering/titration - you find the dose that works for YOU. But also you must remember that tocilizumab only gets half of GCA/LVV patients off pred entirely - for the other half it is a steroid sparer. Then the adrenal question is there too - and there you have to be patient as you know.
Thank you. Sarah is keen for me to press on to zero. She hasn’t discussed an alternative outcome. I am not in pain but feel b***** awful. I was very aware of differing priorities when under a Rheumatologist and an Endocrinologist.
Thank you so much for your reply!! It gives hope :-)!
like you I'm 3.5 years in. But I have PMR/GCA. I had several flares while reducing and couldn't get below 7mg pred even when taking MTX. So a year ago my rheumy exchanged MTX for Tocilizumab and for me that works well. No discernable side effects (no fatigue) and am able to reduce pred without flares. Am now at 0.5 mg pred (my rheumy laughed: 'it's nearly nothing').
Last week's consultation: go zero pred. reduce Tocilizumab (take fortnightly instead of weekly). Rheumy said that after coming off meds 50% have a relapse. But she said going back on meds doesn't change efficacity i.e. you can restart and have same effectiveness.
I have a kind of stiffness early mornings but as soon as I get going it disappears. Just a 77 year old thing I think: rheumy and GP not concerned!
The journey continues... next month bone density test.
"normal pain" - I like it! 😂😂
I had PMR for 6 years when got GCA. 1 1/2 years into that I went on Actemra. Came off Pred about 8 months later and have stayed off over a year. Currently on every 2 week injections. No side effects other than mild fatigue day after injection and occasional headache if I don’t hydrate well. Also cholesterol just over the high mark, but no treatment as my HDL is very high. Once Pred “wore off” which took a few months (and maybe adrenals waking) I felt good and have stayed that way. The PMR feels gone. Am running daily, good energy levels, working full time. Hope to come off Actemra sometime in the next year.
Not for everyone but worked very well for me. Still feel a youngster at 62 and it’s been a long journey!
Prednisone dose had been tapered to 2-4mg last few years of PMR. In hindsight I probably accepted a higher level of pain than I should have and inflammation built up tipping into GCA (or just bad Karma!). I was on 20mg when started on Actemra. Tapered fairly quickly to 10mg then slowed especially once at 5mg.
It seemed to take several months for me to feel “normal” after the Pred. I don’t think I realized the effects it had on me (or maybe it was adrenals, hard to say).
I definitely learned to avoid deep massage while had PMR though. I think it was that which caused some myofascial issues which I still need to manage. Hence neck yoga daily. 🙂
I have been receiving Actemra infusions once a month for over a year now. I have had no side effects, and was able to get off Prednisone entirely.
When you started Actemra what was your prednidone dose?
If I had got down to 5mg I'm far from sure I'd plump for tocilizumab/Actemra but it wouldn't be an option here anyway.
Probably I am a bit impatient, but as I said I balanced between 10 mg pred and 3.5 mg back and forth for 2 years . And developed some complications from it including osteopenia ( I am 57 so it is a bit early to have it). So I want to try something to get of pred. I have already tried methotrexate with no effect for about 2 years. So in you opinion Actemra is not a good choice?
Like DadCue, my UK Rheumatologist applied for and got Ro-Actemra for me when I was diagnosed with GCA/LVV after 4.5 years of PMR. It has enabled me to reduce from 40 mgs to 8 mgs in a few months without feeling any of the usual symptoms. I do however feel extremely fatigued and unwell. It is not the dream drug I had hoped for but it has helped me reduce Pred. I am kind of longing for it to be over. The side effects from Pred such as Steroid induced diabetes and hypertension have gone. I am not a cheerleader for it because I feel rotten. I have heard more positive experiences though. So carry on your research.
"I am 57 so it is a bit early to have [osteopenia]"
Not necessarily, the peak bone density is reached in women in their 20s/30s, after that the density tends to wane. How fast that is depends on the person's personal situation but by 50 about half of Americans already have t-scores that are classified as osteopenia. But osteopenia ranges from almost normal to almost osteoporosis and the range is wide. I had osteopenia when I started pred at 56 - and it has hardly changed even after 11+ years of daily doses mostly above 10mg.
Actemra is a very heavy duty drug with accompanying implications in terms of infections amongst other potential adverse effects. If you have already achieved 3mg on your own, that is a dose that one top PMR/GCA expert is happy to leave some patients on indefinitely to reduce the risk of relapses and the primary factor in reducing at this stage is adrenal function. As I say, it wouldn't be a likely option for a patient already on under 5mg pred living outside the USA - but since the downsides of 3mg pred are minimal I would really struggle to balance the risks against potential benefits.
I know there are people on the forum who accuse me of being anti-Actemra - I am not. But I do believe that the downsides must also be considered.
Thank you for your reply! It was very helpful!