I haven't been able to reduce my prednisone below 12.0 mg without feeling quite ill. My family doctor has referred me to a rheumatogist to discuss options such as additional medication. I can guess what this might mean.I have now developed old MS symptoms, weakness left sided, foot drop both feet and accompanying fatigue which is quite bad. I had significant pain in the left upper thigh and received physiotherapy which helped (ultrasound). The physio felt that the leg weakness had inflamed the tendons at the top of my thigh. We discussed raising my pred which I did, to 13. Not a big jump but it helped. I hope to get more answers from the rheumatogist in November. Would you think that maybe I need more prednisone since I don't seem to be improving? I know that the reason for my rheumatology appointment is to get me off prednisone. At present I no longer have a neurologist (due to cut backs) so I don't know if PMR might exacerbate MS but I suspect that it could. I wondered if anyone had ideas about my situation. Thanks in advance.
Not sure what's happening.: I haven't been able to... - PMRGCAuk
Not sure what's happening.
" I know that the reason for my rheumatology appointment is to get me off prednisone"
That is all very well, but if you have PMR and the underlying autimmune disorder that causes it is still active - and by the sound of it, it is very active, there is nothing they can do to get you off pred without either leaving you in the same state you were before OR introducing another medication. DMARDs might work but there are no guarantees and they have potential adverse effect that, in my view and that of some doctors, are actually as bad as the pred, certainly in terms of living with them. The options that DO work, Actemra and Kevzara, are expensive biologics and not approved for PMR in some countries and somehow, I suspect they aren't available in Canada.
At any point in PMR you need enough pred to manage in the inflammation. If youare aren't on enough, then you might as well not be on any because over time any left-over inflammation builds up like a dripping tap will fill a bucket until it overflows, symptoms reappear and you end up back where you started.
I don't know if there is a relationship between MS and PMR but it does sound to me as if the MS is relapsing and you NEED a neurologist. Which sort of MS do you have? Corticosteroids have traditionally been used in flares of MS - so since it would help in both scenarios, why wouldn't they be willing to consider it?
Thank you for replying. I think that an increase in pred makes sense and I could do this myself. You are right about treatment of MS flares, solumedrol 1000mg IV. This may be the way to go and in fact could be done through the urgent care. To be honest I never thought of that. My physio who is very good, has seen many PMR patients who do well on much higher doses of prednisone. My initial diagnosis for MS was relapsing remitting and the clinic suggested that I no longer fit the criteria. So generally I would be classed as stable, possibly in full remission, hence the loss of a neurologist. The problem with asking for a referral to neurology, in our system right now, is long waiting times, quite common I know. So, I am lucky to get a relatively quick appointment with a rheumatogist. My best bet may be to approach this through the MS diagnosis and be treated for a flare. I understand what you are saying. I am just disappointed that the treatment I am receiving isn't helping and I have concerns about the next approach.
If you could access a neurology opinion via urgent care would that not be a good option to take? Your foot/ feet drop and previous MS diagnosis would seem to justify this. Perhaps not second guess what they might suggest and how that might dovetail with the Rheumato opinion ; just get a possible MS flare confirmed or not and then let the two specialists to chart a route forward for you?
Thank you. Your advice is good and I will likely go this route. I have decided to up my prednisone to 15mg and I hope that this may help as well.
Well their theory of full remission sounds bust doesn't it? Those aren't PMR symptoms. The short sharp high dose you get with i.v. won't cure the PMR and won't last long either - but maybe enough for them to witness the return.
You are right.
I would like to believe that medicine can offer its best all the time but with pressure on the system, someone or something gets cut. My age was mentioned at my last neurology appointment. There are many younger people on their wait list. Thus the optimistic diagnosis was for their benefit not mine. As Piglette said, there are no crystal balls so I'd rather nothing had been said.
As for PMR, if my diagnosis is correct, this is a tricky disorder and because of that it is hard to know what decisions to make. For myself, I don't have a lot of trouble with prednisone. I'd just as soon stay on it, at the correct dose.
Me too. It works and gives a decent quality of life for many of us. And that is what counts.
Hi PMRpro, just read this post. Yes Actemra is available in Canada. Roche even has some sort of financial program to help people pay for it. At present, I am being covered by a provincial health plan as I was the last 12 months and my charge is only $25.00 per month - phew - that vs $1600.00 per month. Was just going to reply to Free Wolf to see if I can help there.
Can you have it for longer? I'd happily pay 25 of any currency a month!
In January 2023 they approved me for 3 months, then dependent on the CRP & ESR they kept renewing till January 2024 - so 1 year. Then a PetScan said my LVV & GCA were resolved so I kept the last month supply in my fridge. Then Sept 25/24, had a vision problem (still trying to clarify if this was GCA but my Rheumy said I was lucky my vision came back), Immediately she ordered a PetScan "VV & GCA areback". Started 60 mg Pred and Actemra from my fridge and once again I have been notified my government plan will cover me till Jan 2025 (again dependent on my CRP & EST #'s) and beyond this - who knows?- I ran away from home last week and Roche was calling me me so maybe they'll step up with assistance if needed. As so many patients on this site it's one day at a time heh?
Then a PetScan said my LVV & GCA were resolved
Highly unlikely after only one year…as was proved in September. Had your rheumy been a bit more circumspect in January, you probably wouldn’t have had a massive flare risking your sight and having to restart at 60mg. And are those providing your plan aware that Actemra can skew the CRP figures.. ie. keeping them lower even when there is inflammation present.
So, we can't rely on these scans? I can only say I think "they" are aware that Actemra can skew the CRP figures. All my numbers have been good since last January and even yesterday no CRP problems, not sure what they'll do with that -
Not saying you cannot rely on them per se, but they, like many things connected with PMR and/or GCA aren’t always 100% all the time. That makes it difficult to diagnose and treat… as we all know, and potentially life changing with GCA. Many things have to be taken into consideration…
Thanks Dorset Lady. Guess I can only hope for the best and carry on.
CRP and ESR can't be used for monitoring when the patient is on Actemra, because of the way it works. No inflammation is created because the IL-6 cytokine can't lock in to the receptors on the cells it needs to work. But that applies in the same way to a PET-CT - while on Actemra no inflammation in tissue is being caused but that doesn't mean that the underlying disease process isn't still active. That it took several months for the inflammation to cause symptoms suggests it was at a very low level of activity but not entirely gone. That was found during the clinical trials, some patients relapsed once the medication was removed - it hadn't had a lasting effect on the real disease process. However, if Actemra was restarted then it was back in remission. I get the impression a lot of doctors don't really understand how it works - I doubt they read the clinical trial documentation judging by what some say.
Thank you for this PMRpro. Maybe this time I should stay on meds longer to try and make sure that it is gone. Would a long low 5 mg dose of Pred help in this regard? Unless Dr. changes the plan I should be off Pred Feb 14 and who knows about the Actemra, not I.
It's impossible to say what dose you need in the long term - that is the purpose of the slow tapers we talk about here. You taper slowly until the symptoms reappear and then go back to the previous dose you were good at - we suggest 1/2mg steps and never more often than once a month, even longer between drops at low doses. GCA is likely to be active for anything up to 4 or 5 years, whether you were put on Actemra or not, nothing affects the autoimmune disorder that underlies the inflammation, it continues regardless. Some people are lucky and it is gone in a couple of years but that isn't that common.
This is about as gloomy as our weather here today, however like others I'll just have to pull up my socks and get on with it. Thanks.
Having had GCA myself, would say 5mg is not going to control it. You need to use the higher doses of Pred to really get it under control - again. How long that will take is really anyone’s guess. If your Rheumy thinks it only last a year, then sorry, but they are sorely mistaken. 2 years [even with Actemra in the mix] is optimistic.
Thank you Dorset Lady, probably hear from me again on this journey.
Sure we will…. 😊
Thank you for your reply. I think Actemra is contraindicated for MS patients as it may cause exacerbations. I'm not sure if the stage of MS makes a difference.
I know that the reason for my rheumatology appointment is to get me off prednisone.
So you are being sent to a rheumatologist who has a crystal ball!!
Hello FreeWolf. Got request for possible help so here I am. First I will say I am probably the luckiest GCA patient when it comes to a rheumatologist, wonderful Dr. in all ways. My background Got GCA Jan 11/23, diagnosed through ER and referred to her the same day. She was very quick in ordering biopsy & Pet Scan stat, immediately on 60 mg prednisone and immediately processed a request for coverage of Actemra, which came through so my cost is only $25.00 per prescription vs $1600.00. Now not everyone can take Actemra but there is that other drug that PMRPro referred to. (I'm also in Canada)
My Dr. set out a plan and by Sept. 21/23 I was finished with the prednisone, however I was injecting Actemra weekly and continued to do to till Jan 31/24 when the PetScan said that my condition was resolved. Unfortunately, it came back Sept 25/24 so now I'm starting all over at 60 mg etc. & Actemra.
When I was tapering per Dr. schedule I may have felt a little different but I persevered and we are all different but at 5 mg when I was going 1 mg every 2 weeks I would get a terrible rash on my chest. It just about drove me crazy, it would go away at the end of 2 wks then start again when I dropped another 1 mg.
I note you say you have PMR, fortunately that I don't have yet. For many years I volunteered with the MS Society - have you reached out to them for help getting a neurologist? You need one and maybe the rheumalogist will increase your Pred for awhile, then do a taper. It's sad when we have to do so much digging on our own but in these times "c'est la vie". If you want a private chat let me know or if I can come up with any other ideas I'll check in with you again.
I'm sorry Gangley, I missed reading this post before I replied to your first post to PMRPro. So as I said there, I might not be able to try Actemra. I am very happy that you received such prompt treatment and that you like your rheumatogist. I hope that this time around you can say goodbye to GCA. Thanks for offering help and I wish you well.
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