I have ordered the Flexiseq but have to say that the pains in my wrists and hands are gone thanks to upping the prednisone. Still I will have it in store when it arrives as at my age I am sure some other pains will rear their ugly heads! The pains were I now think, a flare up and I will be more cautious about reducing too quickly. At the moment I am enjoying a virtually pain free episode! Oh why did I listen to the doctors advice to REDUCE, REDUCE, REDUCE, despite me telling them I was in pain!!! I was told that the pain was part and parcel of Polymyalgia and I needed to go with it. Of course I want to reduce the prednisone but oh how wonderful it is not to be suffering, grinning and bearing it. 😀
Reduce in your own time my fellow sufferers and listen to your body. Enjoy the rest of the bank holiday. Here in Devon it’s lovely and sunny. Hope it’s the same for you all.
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Dartmoor4
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I am still a novice about PMR, but since I was diagnosed with polymyalgia no two doctors or nurses have given me the same advice. I appreciate PMR manifests in many, many ways, and it’s almost an individual disease. I must also add that with age there may be other physical problems going on that overlap with PMR adding to the difficulty in diagnosis and treatment. However, there is consistency in the advice given on this site so why is there such disparity from (some) doctors? Only on this site have I found true understanding, empathy and solid advice. I feel that these are needed along with the prednisone with PMR. Steroids alone are not enough. Thank you to all you great people who untiringly give not only advice but invaluable support too!
Because every single one of us has walked the walk - very few doctors or nurses even have a family member with either PMR or GCA. Initially my nurse daughter was horrified at me being on pred because "it is so dangerous" until she discovered that it saved her own daughter's life repeatedly. Then she realised it gave me my life back. Not much use living 10 years longer if those 10 years are agony and meaningless because you can't DO anything,
A few of us work alongside rheumies in research projects - and the charity has not only provided some of the funding but also the factual impetus to get them to look at the things that matter to the patients. If we can provide the rest of you with the courage to speak up and say NO or "Hang on a minute - but ..." to your doctors we can educate them that neither PMR nor GCA is really the way they had it presented to them in the textbook - the only textbook patient appears in the textbook and almost never in reality.
So true! And the emphasis HAS to be on quality of life or it’s just not worth living. Also being virtually pain free helps enormously our mental health. Nothing can drag you down more than nagging pain that prohibits you living your life. Yes steroids have unwanted side effects. All meds do but they work well for PMR. I will reduce but this time SLOWLY!
Quality of life is important! Hand and wrist pain was not among my original symptoms so it took a while for me to realise it was the first sign of a flare.
I went down to 5mg one day and the next day 6mg as directed by the doc. The pains in my wrist started and so went up to 8mg everyday after seeking advice from this site. I am virtually pain free!
Ok thx, I went down to 3mg upped to 5mg ad pain in feet hands and shoulders starting to grian again along with general fatigue we have to deal with on a daily basis. Have increased to 7mg in 3 increments some defo improvement might go another 1 mg thus week making 8mg. Its all about quality of life which has not been great fir the last 3 ir 4 months. Why the reluctance by doctors to increase pred I do not know, my bone density according to them is amazingly good.
You need to find the dose that works for you. Then SLOWLY reduce. There is no rush. I can’t believe I kept reducing even though the pains were increasing. Maybe because I was told to by the doctors. But they don’t have my discomfort. I am on 8mg and will remain so for another 4 weeks then I will VERY SLOWLY reduce by half a mg. We are all in the same boat with the same aims and we WILL get there in the end!
I gave Flexiseq a try and it worked great on my knee so I thought I'd try it on my much more painful hip. In reading further, I see that it is not helpful for hip pain in most cases. I wish something would be! Actually, my problem is trochanteric bursitis which is nerve/muscle related, not joints, so stretches and exercise is the best thing for it. But it's so much like work! Hmmmm.
Thank you for letting me know. I thought I would need it on my wrists and hand joints but now the prednisone has kicked in I don’t think I need it at present. However it’s had such good reviews that I am pleased to have a tube put by just in case. At my age one never knows what is going to give pain next😂
If it is bursitis then flexiseq is unlikely to help - it is for joints, WD40 for humans!
However - the rehab department here uses a form of lithotripsy (used for kidney stones) adapated for soft tissue problems: extracorporeal soundwave therapy. The first Ime i had it the 4 sessions were done within a couple of months and worked really well. This time it has worked but much more slowly because there have been such long waits between sessions.
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