Slow reduction was working...till I hit the wall..What now?
Posted , 12 users are following.
I've been on the PMR rollercoaster for close to 3 years. Methotrexate didn't help, Azathioprine made me feel awful, and my rheumatologist's latest idea is Myclophenate, which I've delayed starting on. I've tried over and over to reduce prednisone, but I get down so far (12.5 mg) and it all turns to custard. Recently, after a patch on 30mg because of a chest infection, I started the slow reduction again and got down to 12.5. I was feeling really great for the first time in so long, and I really thought it had maybe finally disappeared. Began the slow reduction to 12 and am now exhausted, puffy, and very stiff - the feeling is totally familiar.
Any advice would be welcome. All I can think of is to see if going back to 12.5 helps, and then starting the next DMARD.
0 likes, 18 replies
judith90525 Joannamary
Posted
I do feel for you Joannamary - it's very discouraging isn't it? My journey is very similar to yours and, after feeling like a dead penguin for the last few weeks I have gone back up to 20 mgs per day on my GP's advice. It hasn't helped much so maybe something else is going on like Osteo?
Definitely try going back up to maybe even 15? The idea, apparently, is to find the lowest dose which deals with the inflammation symptoms, let it all get mopped up and then begin the slow taper from there.
It's not easy is it and requires so much patience BUT you are not alone.
alebeau Joannamary
Posted
I totally understand your dilemma as I too am stuck at 13 mg and am afraid to reduce as last time it was a train wreck. I will try 12.5 soon and if I have too much pain I will go back again to a higher dose, it is unfortunately hit and miss with the reduction. I have had PMR since October 2018 so I am a relative newby and learning the hard way how to safely reduce.
snapperblue Joannamary
Posted
Please try not to be discouraged! PMR lasts as long as it lasts, which may be several years. As Judith says, the goal is to get the dose that controls the symptoms (and thus the inflammation), wait a while, then try reducing. You are not doing anything wrong, you are not "failing" if the reduction does not work.
I have been at this for 4 years. I have been as low as 5 mg, but now at 10 mg long-gone symptoms are creeping back. My head tells me I need to increase the dose again to get ahead of the inflammation, but emotionally I am screaming "NO! I don't want to!" Having written this, maybe I will do what I have known I should do for the last 2 weeks!
Unless you have a serious problem taking prednisone, the goal is not getting off it. Your progress is not measured by the numbers. It is how you feel. Take care of yourself, be kind to your body. You can't beat PMR by outright warfare, you can only deal with it by keeping the inflammation under control.
Anhaga Joannamary
Posted
Do you think everything else in your body is in balance? Are you taking Vitamin D? Do you think you are getting enough magnesium? have you been checked for things like Vitamin B12 deficiency, iron levels or your electrolytes? I think pred messes us up a bit so things which might not have been an issue at the beginning of the pred journey may be now. And maybe other meds also affect these things.
Joannamary
Posted
Thank you all so much for the kindness and support! It's good not to feel alone with this...
One thing I have wondered - taking a multivitamin and Glucosamine for a month coincided with a huge improvement in my stiffness, energy and general wellbeing. (while still doing the slow prednisone taper). I ran out of the Glucosamine and days later began to feel awful again. I was sceptical about Glucosamine - decided I'd try anything once - but I've started back on it again, to test whether it's just coincidence. Anyone else tried this?
Anhaga Joannamary
Posted
I have used glucosamine for decades for osteoarthritis. In my experience it is not a painkiller per se but I believe it has helped to reduce the progression of arthritis and prevented me from becoming as disabled and crippled as some people seem to be. I do have extensive arthritis in hands, feet, lumbar and cervical spine and unfortunately now starting in my knees. But I was first diagnosed with OA when I was 40, probably had it earlier, and am now in my 70s, so I would give glucosamine a thumbs up. Have never taken any other medication for the OA. I take a capsule, not a hard tablet, and a dose of 1000 mg twice a day, which is higher than suggested. Obviously it did not prevent my getting PMR. In fact when I was first becoming ill with PMR, as yet undiagnosed, I thought it was the OA getting worse and the glucosamine not working so I stopped taking it. After I was diagnosed I started to take it again, although perhaps not until the arthritic aches reappeared after tapering prednisone allowed them to creep back.
ptolemy Joannamary
Posted
I have been taking glucosamine with condroitin for yonks. I bought some from ebay at one point and found that I had a lot of pain from my back. I got some others from a proper shop and I was OK again which made me believe that it does work and the ebay pills were scams.
EileenH Joannamary
Posted
Do the DMARDs help get to a lower dose? They aren't guaranteed to do so and for the patients they don't help (the majority I dare to say) it works better to accept pred alone and work around the downsides. Combining a DMARD with immunosuppressive pred just increases other long term risks such as for cancer. IMHO all they do is add another layer of adverse effects.
Even with DMARDs you will get to a wall - you are never reducing relentlessly to zero, you are looking for the lowest dose that gives the same result as the starting dose did. For some people that is more than for others - it took me over 4 years to get below 10mg. Once you start yoyoing it becomes increasingly harder to reduce so do resist that.
I have been to below 5mg and back to 7, then 10 and then 15. Now I am back to 10mg. That's in a PMR career of 15 years and over 10 years on pred. PMR requires a median duration of treatment with pred of 5.9 years - that's for half of patients. The other half take longer and 40% of patients are still on low dose pred after 10 years. I haven't even achieved that reliably!
Joannamary EileenH
Posted
Thanks, Eileen. I've been reading up about Mycophenolate and there seems to be absolutely no evidence about its use in PMR. The DMARD of choice seems to be Methotrexate but even then, it's not fully researched for use with PMR. Looks like there is some professional suspicion that PMR is not merely a version of RA, and therefore to be treated similarly, but a different sort of condition.
I find myself really reluctant to take something which is so heavy-duty and has the potential for such nasty side effects. Better the devil you know...I think I'll stick with the prednisone, try to taper even more slowly, and try to lose some of the weight and stay healthy.
EileenH Joannamary
Posted
That is how I feel. I did agree to try methotrexate last year - never again! After a month I could barely put one foot in front of the other. I was going to S Korea for a science meeting and had said I wouldn't take it while there - and in that week I already started to feel able to function.
My rheumy (a world PMRGCA name) says he has had good results, his former boss (another world PMRGCA name) swears by leflunomide. My experience over 10 years is that neither work well unless the diagnosis was probably incorrect!! Mycophenolate doesn't figure in their vocabulary.
Cut carbs enough - and you will almost certainly lose weight and reduce the risk of steroid induced diabetes. I find it also reduces the symptoms - in that eating carbs will cause a flare.
Joannamary EileenH
Posted
Thanks again, Eileen. At present I resemble a pregnant chipmunk, so losing weight really has to happen! I've never had typical PMR anyway - no shoulder problems, just very stiff weak thigh muscles, exhaustion, disequilibrium, sweating and vision deterioration, and malaise during bad patches. It all started with a probable episode of Ramsay Hunt syndrome (shingles and Bells palsy).
Some of this has to be prednisone side effects. I've had what seems like every test known to the medical profession, and fortunately nothing identified except persistently elevated CRP. So who knows??
Really appreciate your knowledge and advice! And your personal account.
ptolemy Joannamary
Posted
Hi Joannamary, I have persistently elevated CRP, currently 88, did your doctor try and do anything about it?
Joannamary ptolemy
Posted
Hi ptolemy
Mine was nowhere near that high - below 20 after the first few weeks -and the prednisone, and then DMARDS, was what was prescribed. 88 sounds high!!
ptolemy Joannamary
Posted
It has come down from 101. It had been 27 originally. If I were below 20mg my doctors would be very happy, so would I.
snapperblue Joannamary
Posted
Better a pregnant chipmunk than (Judith's) dead penguin, I always say!
Joannamary ptolemy
Posted
Good luck with getting it down further!
ptolemy Joannamary
Posted
Unfortunately at my blood test last week it is going up again!!
Joannamary
Posted
What feels like another flare...I was steady and managing ok (though not wonderfully) on 13 mg prednisone for a month, and then the symptoms took off again. Up to 16 for a couple of days, then 18 for 3 days, and today it's worse than ever so I can see no other option but to put it up to 20. I'm so fed up, and I'd be grateful for any advice! And when others feel they've got it under control and are on the right dose , how are your symptoms? Are you still stiff and sore? Can you go up and down stairs like a grownup? Do your legs feel weak and wobbly? I've lost all idea of what I should be aiming for...my rheumatology appointment was cancelled and I cant see my GP for a week.