I was diagnosed with GCA in September 2014. From 40 pred initially I am now reducing from 5 to 4 by the dead slow method. I have been down to 4 before then had a flare so up again to 6. My blood tests according to the consultant are “perfect”. I am feeling better than I have for three years but my muscles are very weak andi find it difficult to walk far or at all without a stick. Does anyone have experience of coming off pred completely? Would it work better to come down by half a mg at a time? Has anyone had experience of effective rehab? I have kept walking and doing pilates throughout the three years but never seem to get stronger.
I have been so grateful for all the helpful advice I have got through this site. Thank you to everyone who has replied to my queries.
Penelope VF
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I personally couldn't have tapered by more than .5 mg once I got down to about 6 or 7 mg. I have been as low as 1.5 but currently tapering to 3 again after a bit of a flare in the summer. I also have found myself apparently weaker the past year or two than I was prior to diagnosis and for the first year or so. I know age has something to do with it but I tend to blame pred more as I have continued to exercise throughout the PMR journey. I suppose one day we will be off pred completely but my experience a few months ago warns me that it may not be as soon as I'd like! Have you seen a physiotherapist? One who has an understanding of PMR/pred weakened muscles?
Yes you can get off Pred, but only if your GCA has gone into remission.
I’ve been off Pred since September 2016, and both Celtic and jinasc, to name just two, also are in remission.
Once I got to about 7mg I only reduced at 0.5mg a time, and using a slow taper. If you are having problems it sounds as if your GCA is still active. I was on Pred for 4&half years, but taking account of the time undiagnosed I think my GCA actually lasted about 5&half years.
I found pilates a great help for leg muscles but if it’s done nothing for you then maybe you need to see a physio as suggested by HeronNS or maybe try yoga or tai chi - I’m sure there’s something that will help.
That is very encouraging. My consultant considers that I am ‘cured’ and that my weakness is steroid induced myopathy. Thank you very much for your reply. I think I shall try reducing by half a mg at a time now.
Your consultant may be correct, but the only way you’ll know you’re “cured” (although there is no such thing with GCA or PMR) is if you come off Pred and are symptom free. Your tests may also be “perfect” but that only means the Pred is doing it’s work!
However he may be correct on the steroid induced myopathy, but if you still need the steroids, you need them! Bit of a Catch 22 situation unfortunately.
My PMR has been around nearly 4 yrs and I'm now trying to reduce 4 mg to 3.5 Prednisolone. I read, probably here, that reducing from 5 can take a while, say 1 yr, and to go slowly. My arm & leg muscles are very weak and after a Pilates class I do 2 weekly, I can feel I have overstretched. I walk 30 mins daily. I need help to build up my muscles and from someone who understands PMR. Pilates is useful but the teachers are not trained physiotherapists & really have no idea what PMR is and the effect it has on the body. Definitely reduce by .5. Also I understand from links I have read here that the majority of us on Prednisolone for PMR (maybe GCA also) will take it for 6 yrs.
I think whatever exercise class you go to whether it be pilates, yoga, or anything you have to select carefully. Some teachers are very knowledgeable, but of course they usually cost more per hour and work from a studio or suite of studios within a health spa or similar, and only have a limited number per class. Mine for example only teaches six students per class. Those that hold a class for a lot more people in say a village hall, or whatever may not have been as well trained nor can give the personal attention required.
So you do need to do a bit of research beforehand. They can always be found in the different professional website if they are registered.
If it helps, I got down to zero in May 2016 but in November 2016 I had a small flare and, to catch it quickly, went on to 5mg again and then tapered down, coming off again in May 17. I've been at zero ever since. I do a weekly Pilates class, have a very active job which involves a lot of running around and walk several miles a day but it's only in the last couple of months that I have felt completely back to normal - and there are still things that my knees won't do that they used to! Still improving though. Don't give in - keep trying new things and push the boundaries a little bit more at a time. You'll get there!
which does what it says on the tin! There are a lot more though besides the people there who have got off pred.
I know a few people who have said it took a good year after being totally off pred before they felt properly "back to normal" in terms of muscle strength.
On the other hand - if what you have is steroid myopathy - why has your doctor not referred you for physiotherapist advice? The right sort of exercises will help a lot.
However - how have you tried doing your walking? You have to start small and then build up slowly - and by small I mean maybe 5 min out and 5 min back at a time. Once you feel good doing that - 6 mins out, 6 mins back, and then building up every few days in the same way as long as that feels OK. Once you have achieved time - build on speed.
Lack of much muscle shows most in my upper arms, and at the moment I have an aching lower left arm, presumably caused by carrying something too heavy. I suspect this will resolve in a week. Using this arm for lifting slightly heavy items is uncomfortable. I walked a couple of miles across country yesterday but my legs feel fine today. I don't carry a lot of weight and am thin but it's noticeable how skinny my arms became after being on Prednisolone for a couple of years.
I had PMR, so have not had the amount of Pred you have had, so do note that my comments may not be totally suitable for your position.
I have been off Pred for about 4 years and would say that it took me at least 2 of those 4 years to feel anywhere near as fit as I used to. I did try to keep going while the condition raged, but it was a trial - and I can now, once again, swim, ride and walk and am so delighted to be able to do this. I just have to do it all regularly and do my physio exercises - I go by the principle that if you don't use it, you lose it. However I've fallen for just about every virus going since PMR, so my regime is halted regularly...... ;-(
OK, I'm older now than when I went into PMR, but would say that I blame PMR more than ageing for the muscle weakness/discomfort I still have, as it is such a marked decline. I have worked with a good physio and push myself fairly hard - and am hugely better for that, but my knees are weak (had awful knee issues with the PMR) and the top of my arms are still painful at times. I suspect nobody has really looked at the after-effects of GCA/PMR (no money in it for drug companies etc. so why would they do it, maybe??), so we're on our own - and of course each of us is unique, so one answer will not fit everyone!
Others have given you some good ideas - but along with those you sadly have to just do what you can when you can and don't stress about it when you can't. This takes lots of mental strength - so I wish you bucket loads of that coupled with a practical and kind understanding of what your body can do - and send tons of good wishes for a better time ahead.
I have been reducing only by 1/2mg, currently at 51/2. A few months ago I felt like I could not walk very far without sitting down. I finally had a MRI, I have Spinal Stenosis! It also causes back pain. With therapy and doing my stretches everyday I am better, but will always have it. Just something to throw out there.
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