Swollen hands

Hi,

I have been working on PMR reduction with prednisone and methotrexate for about 18 months and after a major ‘flare’ over a year ago, I have been on a slow ‘taper’ from 20 mg pred using a 5-10% reduction of the medication monthly over that period. Now I am just tapered down to 4.5 mg. Generally all the thigh, shoulder, hip and shoulder girdles pain and ache levels seem to be maintaining a fairly uniform and bearable background level that has allowed me to keep the taper going at this rate (currently 3-5% medication dose).

However, getting to this point did encounter one big issue that really bothered me, and didn’t follow the overall body pain reduction; this was my HANDS.

The cause was the commencement of a “flare” after I had reduced to 4mg and everything started to get worse including my hands. The pain and slight swelling in the hands was not like carpel tunnel – it was in all joints of both hands from the wrist to the furthest finger joint.

Both hands were almost locked up in the morning and needed constant flexing (which was painful) to allow me to open the marmalade jar ! The flexibility and pain level did improve slightly toward the evening but was never gone completely.

As I considered this also as part of the “flare” I kinda’ put up with it and increased Prednisone from 4 to 5mg and kept at 5mg for 3 months at which time both body and hands significantly improved. I then ‘crept’ down by 0.5mg to 4.5mg and stayed there for 3 months which is where I am currently.

I still have a bit of background hand ache, but nothing like before.

I don’t know if this is the condition that you have, but it does sound similar.

Hope this info is of some help.

Dave

Hi. I was diagnosed with GCA last May I started on 60mg of Prednisolone, it was then that the Dr's realized that I also had PMR. None of the Drs that I saw were sure how to proceed so I felt I was very much on my own. In July the dr told me that I now had Diabetes as well again not much guidance as far as my illness was concerned I have fumbled throug with great help from the people on here. I had a relapse when I got the Pred down to 8mg and was put back on 60mg. I get swollen hands, swollen feet and knees. and the best advice that I have recieved is. "Be kind to yourself" it seems that everyone is different but the thing that is most important is that you have plenty of rest, no stress, and don't overdo anything. It is a long hard slog and it will probably take from 2 - 5 years but remember it never goes away, there is no cure. It can come back at anytime. It's a nasty disease. But the best advice I can give you is keep in touch with the people on here, I would have gone mad without their help. Good luck and have plenty of rest. Go to bed in the afternoon if you can. 

I also had swollen hands with PMR, it is part of PMR in some people.

However - the fact that 20mg pred did nothing at all does make me wonder whether it is PMR at all. one of the criteria in the UK tends to be that it responds noticeably to a MODERATE dose of pred which is 15-20mg. If methotrexate was helping I would wonder if it is late (or elderly) onset RA - although it can take 6 months to work in that. There is also little point reducing a dose if the blood markers are still elevated and you have pain - unless the decision is made you might as well stop the pred. Though - in view of what I am about to say, did you stop exercising and rest during the early days to allow the 20mg to achieve something?

BUT - and this is a big but, if you are continuing to work out every day you are really asking for continuing pain if it is PMR. In PMR your muscles are intolerant of acute exercise, they are unable to tell you while you are exercising that you are doing too much and then require much longer to recover afterwards. "Training" involves the healing of tiny tears created in the muscles by exercise and once they have healed they are stronger. In PMR they don't heal so well - if you then go and exercise again you are just adding more damage and the poor muscles never get a chance to recover.

This is particularly true for the sort of exercise you do in the gym: the worst sort of exercise in PMR is repeated or sustained actions of the sort you do in weight training for example. That is what causes the pain: the same muscle fibres are being used repeatedly, the blood flow is poor because PMR is a vasculitis, inflammation of the very small arteries supplying the muscles with blood, oxygen and nutrients as well as removing the waste products so lactate builds up. The result is that your "normal" exercise programme results in the sort of reaction that you might expect after running a marathon without training.

You have a new "normal" now and you will have to adjust to it for some time - not for ever, if you go about it properly you may be back to training next year. Skinnyjonny on another forum was in a wheelchair shortly after being in training for long distance running, in less than a year he was able to run 5km. But in the meantime he followed a very gentle training regimen. If you google "skinnyjonny running PMR what a difference a year makes" you will find his post about it and can explore that forum to find his story. A warning though: often men and women respond very differently to pred and experience PMR very differently.

You have to learn to pace yourself - I'm not saying DON'T exercise, I'm saying try cutting it down to a very low level for the moment, not exercising every day, go for a gentle walk on the other days. Once your pain and inflammation is being managed well and you can reduce the pred to a lower dose, then you can think about stepping up the exercise - but VERY  slowly, just a few minutes more each WEEK, not each day. This is a long term thing. PMR is a chronic illness, only 25% of patients recover in under 2 years and they remain at a higher risk of a relapse. Half take somewhere in the region of 4 to 6 years before the PMR disappears.

And since I didn't explain before: PMR is not the disease itself. It is the name we give to the symptoms of an underlying autoimmune disorder which makes your immune system unable to recognise your body as self and it attacks the tissues, damaging them and causing inflammation, pain and stiffness. It is a vasculitis, it affects the blood vessels, although in effect it is similar to RA but there the joints are damaged. Luckily in PMR the joints aren't damaged - and in the long term the left-over damage in PMR is relatively minor. It usually goes into remission eventually but you are looking at years - not a few months. Until then, pred should allow you to manage the symptoms to allow a decent quality of life. But you have to do your part by pacing and resting appropriately.

Hi,

I have had badly swollen feet and legs almost from the beginning of PMR in my case.

A couple of days ago when I saw the rheumatologist for a 3-mo. visit I asked him about this. He said the swelling had nothing to do with having PMR, but I find that hard to believe. At my age, 84, some swelling is certainly not unusual, but what I have is so bad I can't wear normal shoes.

I am at 4 mg. The doctor volunteered that I am at a dangerous level--that ata 4 and below, the body tends to rebel greatly about any more reductions and, he said with a smile, "you might have to go back to 10 mg. or something..." 

I asked what he thought about the very slow reduction method and he said "I wouldn't do that--just keep doing your 1 mg. per month like you have been." No further explanation.

 

I am so sorry you are going through all of this!  It is so dang scarry to not know what you have!  Did you have other blood work done?  I would be leery of PMR if you didn't respond to low dose (15-20 mg) prednisone within 3 days.  Also, swelling?  Others should weigh in but that doesn't sound like PMR to me.  I was checked for many other diseases in the early stages, just to rule other things out.  I do hope you are being checked out completely!  All the best!

People have PMR are usually have bad circulation. To reduce the swollen you can use a marble stone ball about 2 inches diameter to roll on your hand, leg and wherever you have pain. It improves circulation, reduce swollen and easy the pain. When you roll the ball don't use pressure, use your palm to keep it in the position you want it to be and swirl it round and straight direction or up and down at the way you feel comfy. It will suprise you with the result.

Feel better and all the good wished

Lucy