I have had classic PMR symptoms (shoulders/upper arms/hips) and was diagnosed on March 2015... I am now reduced to 6MG pred daily.
Have for the past two weeks or so had SEVERE wrist pain... not sure if it is pred withdrawal or PMR.
Anyone else have PMR pain hit their wrists? Cannot stand to bend them... Cannot remove a lid from a jar, etc. Gets better as the day wears on. Worse in the night/early morning.
Maggie, as PMR runs it's course, symptoms show up somewhat randomly, each for some period of time.
In my case, I've had months-long stiffening of the knees, sore feet, arthritic thumb joints, and painful ribcage, each at a different time.
So something like painful wrist joints sounds just like the next possible thing I might have to deal with, though thankfully not yet, and I'm still hopeful that perhaps my intense ribcage pain might be the last area to get hit.
I would like to create a list of specific symptoms by region that are subject to episodic pmr attack.
I do notice that, with respect to my more-recent regional symptoms, that I can reverse any onset of new symptoms by increasing my prednisone dosage slightly, so I am now back up to 6mg (18 months into treatment) in response to my thumb joint and ribcage symptoms, and have been "stuck" at 6mg for several months now.
Yes,I have had exactly the same with this flare up-first time ever and like you weakness of grip.Other members on forum put my mind at rest as they have had the same
Hi maggiGrace,
sorry to hear about your wrists. It's just a thought but I also had painful wrists last week and also thought it might be pmr. Then I thought about what I'd been doing over the previous days before. My food processor had packed up and I made a batch of pastry by hand! Hence the pain and it has now cleared up. So it's always wise to look for other reasons first before blaming pmr. I do empathise and hope you get rid of the pain soon whatever it is.
Hello Maggie, I've had PMR for nearly two years and can remember having the wrist aches and pains but put it down to the Alendronic Acid as this is when it seemed to flare the most.
i don't know what mg of pred you started on but 6mg seems quite low at around 6 months into PMR and I wondered if this could be a reason too.
hope it soon goes away.
glenys
Maggi, what dose of predict were you started on - and what were your ESR & CPR results?
On the forum lately there seem to be many sufferers who get down to amazingly low pred after only a few months! I have always had bad wrist pain (among other things!) and after 3 1/2 years I have had great difficulties getting down to 6 mg (and I know I am not alone on this).
Have your doctors found some miracle drug that gets you of pred so quickly? I wear wrist bandages at night, and sometimes during the day, to cope with the pain. I also wear ankle supports at night or when I go for a walk. In fact it seems lately as though I am getting 'dressed' to go to bed!!!
Sorry about the 'predict'. I think I'll have to turn off this blessed predictive text. I find it helpful, but b.........annoying at times!!
All the best fr Constance
Hi Maggi I've had PMR for about a year with the classic symptoms you described.. Started at 15mg pred. and over the last 24 weeks have been reducing at the rate of 1mg every 2 weeks. Got down to 4mg with no problems. When I dropped to 3mg the symptoms started in my hands and wrists just as you've described. I went back up to 4mg for a few days and then upped it to 6mg and there now appears to be an improvement. Good luck. Bob
Are you new to the forum Bob? Can't remember having seen your neme before.
Brought back wonderful memories. We lived in Bristol for 7 years. Great place.
Regards fr Constance
Hi Constance yes i'm new to the forum. I guess i joined out of desperation like most people and it certainly helps to know that you're not alone with the struggle. Yes Bristol is a wonderful place with something for everyone.
Take care. Bob
Then "welcome to the club that nobody really wants to join". it's a great club. Always someone here to listen/advise, etc. We are all so different, but we all have the one thing in common - the 'delightful' illness that nobody seems to have heard of till you get it - PMR!
That's supposed to be PMR underlined!!!😏😏
Yes i am reducing from 10mg to 8.5mg and my feet for the last 3 weeks feel as if they are on fire, and today my thumb and fingers hurt, i have only had this since reducing i think it is to be expected.
Reading all the replies to your question, I have a new question - would most of you attribute the symptoms to PMR itself, or to steroid withdrawal?
PMR caused me a lot of pain in wrists, base of my thumbs, hands and feet. It was put down to RSI originally but it was almost certainly tendonitis/synovitis as part of the PMR. After about 5 or 6 months at rather higher doses than you are at now it resolved. Tendons and joints don't respond as quickly to oral pred as muscles do since their blood supply is very poor - the pred "leaks" into the fluid surrounding them and eventually the inflammation fades. For a long time it was that that would flare up if I tried to reduce too far. Many doctors deny that hands and feet can be involved in PMR but a study in Leeds last year found they definitely are.
Someone has mentioned that there are a lot of people at present who seem to have reduced very fast - theoretically, if the long term management dose is going to be quite low, you should be able to reduce down to that quickly without problems. However, if there is a lot of existing inflammation in tendons and joints you may find that is what flares first and that remaining at a slightly higher dose for some time might do the trick.
In early PMR I never could remove a lid from a jar - hopeless even with aids! If I tried it left me in pain for days so it just wasn't worth it. Holding the vacuum hose was (and still is) difficult. At the start I found a wrist brace helped a lot to rest the painful bits and that is something that might be worth a whirl.
BUT - and this is a big but: was the doctor 100% certain it is PMR you have? Could it have been a flare of something called palindromic rheumatism? This tends to appear and disappear with the joints appearing totally normal between episodes. It also would respond well to pred, disappear for a while, allowing you to reduce very quickly but then could reappear. It isn't always in the same joint either, it can wander around the body, and would also be accompanied by morning stiffness.
Just a thought.
Sorry Anhaga - I don't quite understand what you mean.
If you reduce the steroid dose in too big steps you are likely to suffer discomfort from that alone.It will generally improve over a period of time as your body gets used to the new dose.
If you reduce the pred dose to too low a level the symptoms we call PMR will flare again as the inflammation due to the underlying autoimmune disorder gets out of control. In this case they will get worse over time.
They can be very similar - and can easily be mistaken for one another. You don't know which it is and the knee jerk reaction is to return to the higher dose. That is the reason we advocate the very slow reduction - it doesn't have to be slow in terms of a long time, the important aspect is to reduce in small steps, preferably spread over a few weeks, to minimise the risk of withdrawal pain because the body hasn't as much to get used to - and at the same time identify the right maintenance dose more accurately. If you reduce in large steps you might be fine at 10mg but have a flare at 7.5mg - but if you go at 0.5mg at a time you may find that 8mg is also enough.
Margaret - You are reducing way over the 10%!!
Yes - why by 1.5mg now you are below 10mg? 1mg is more than enough - and 0.5mg is far better.
I had those very symptoms of palindromic rheumatism for several years before PMR symptoms started suddenly in November of 2014. Here is what I experienced: pain and swelling in my right big toe that came and went; pain and swelling in my right thumb that came and went, also pain in my left hip joint that again came and went at various intervals of time. No real pattern and not all the joints were involved at the same time.
I suspected gout in my toe and had the blood work done that ruled out gout , Then I vistied a gynecologist because I thought the deep hip pain might be related to cyst on ovary or uterus - not so. I never had any accompanying redness of toe or thumb joint that was obvious.
I didn't pay much more attention to the infrequent, traveling pain, but now wonder if it wasn't palindromic rheumatism causing it?
Now, however, the pain is definately different and of the PMR nature. Typical shoulder and neck pain, along with stiffness and pain in both hips which prednisone greatly reduces. I would also like to share that the PMR pain came on suddenly one morning when I woke up two weeks after a very stressful root canal.
I am sharing this so that we can compare experiences. To me, this PMR disease is very mysterious and manifests differently in every person. Also, the prednisone taper seems to be different for everyone.
Bottom line - no doctor ever mentioned palindromic rheumatism or any other reason for my traveling pain. I just forgot about it when the pains would disappear but I knew it was not normal or good. Now I seem to havePMR and constant pain (although much reduced with pred.) It is encouraging to know that some of you have actually gone into remission and do not have the pain and do not take prednisone any more. Thanks to all who have shared their victory.
i am doing it by .5mg, i started at ten and have got to 8.5mg, sorry if i mislead you, in so much pain today, it was what Dr Bingham wanted me to do, so i am giving it a go