I have been working on PMR reduction with prednisone and methotrexate for about 16 months and after a ‘flare’ about 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 tapering from 4.5 mg to 4 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).
But – one big issue that is really bothering me, and hasn’t followed the overall body pain reduction, are my HANDS.
The pain in the hands is not like carpel tunnel – it is in all joints of both hands from the wrist to the furthest finger joint.
Both hands are almost locked up in the morning and need constant flexing (which is painful) to allow me to open the marmalade jar ! The flexibility and pain level does improve slightly toward the evening but is never gone completely.
I have checked the Forum for similar conditions and haven’t found anything specific – I was wondering if others have this specific condition or is it likely that I may have some other Rheumatic condition that is ‘tagging’ along with the PMR ??
My Rhumetologist told me the other day that some pain comes from the scarring left by the PMR, which I wasn't aware of, so maybe it's down to that, partially.
Must be very frustrating and hope someone comes up with some help for you
My husband , who has Myasthenia Gravis which is another auto ammune system disease. I have PMR. He has the same problem with his hands. If you take Omega 3 capsules from the health food shop it will help. He finds if he stops taking them the pain and stiffness returns.
The only help I can offer is to take Tylenol for the pain. Apparently we PMR sufferers are encouraged to do that. I didn't expect much if anything in pain relief based on taking it years ago, but bravo! 1 and a half tablets worked like magic.
Share the same, David. Matter of fact, was told that I just as likely had late onset rheumatoid arthiritus, LORA at the beginning, 1 year ago. But after 1 year, does not seem to be a material change in the hand joints. For me, appears to be the resident synovial finger joint inflamation, no evident erosions. My prednisone taper down to 5 mg from 15mg a year ago. Tried 2 months plaquenil, no positive result.
I find if I over indulge in carbohydrates my fingers & hands tighten up and i cannot bend them. Morning is the worst then it eases up during the day, not sure if its the same problem, but keep it in mind... feel better
Hi Barb - I would be interested to hear the results of your test and the communication you have with your doctor.
i have discussed this issue with my rheumatologist and she indicates that if the range of the distress I'm having is all my hand joints, it is unlikely to be CT. but she did not give me other options other than continuation of pred and MTX for at least another 3 months before heading in other directions.
hmm... interesting - I do eat quite a lot of carbs as a percentage of my intake. if things don't improve, maybe I'll adjust my diet - reducing carbs - for a week or so and see what happens.
Have you researched or been informed that PMR has an influence on synovial fluid loss in the hand joints ?
What I have researched is that most info regarding synovial fluid irregularities is from patients with joint disease related to knee effusions and most medical research is largely limited to findings in the knee joint.
Regarding MTX - my rheumatologist started MTX with pred after my first 'flare' and appart from this hand issue, I seem to be 'tapering' the pred quite well from 20mg to currently 4mg without any major issues. But who knows ??!!
Hopefully I'll be able to give you a defined answer when I get to ZERO pred by the beging of 2016.
A lot of people have found a benefit from cutting carbs - not least in avoiding the pred weight gain or being able to lose weight while still on pred.
Research in the north of England established last year that the hands and feet CAN be involved in PMR but whether it is synovial fluid loss I don't know. There isn't the same joint damage found in rheumatoid arthritis - and LORA remains an option as there is usually far less joint damage with it than with juvenile onset RA.
Remember that osteoarthritis pain is also helped by pred and many people find that appears when they get to low doses of pred.
The finger joints was my very first indication something was wrong with me. That was in 2011. I I was 57. I also was dealing with an over active thyroid for reasons unknown. I treated the thyroid for 2 yrs. that's over now but the hand issue continued. No one knew what it was. In 2013 I was in so much pain I couldn't get out of a chair or my car. I couldn't do anything. I was taking ibuprofen for joint pain. I developed terrible heartburn and took myself to ER. Thought I was having a heart attack. I was 60 at the time. They didn't really find anything, but put me on Naproxin for pain. It worked great. So I demanded a rumatologist. I've tapered down from 15 mg to now 5. It's been 2 yrs. my hands still bother me, no one knows why. I must say that when I took that first 15 mg I took 24 hrs and I felt like a million bucks. I cycled 33 miles that next day. I use to love running and cycling. I hadn't been able to do it since 2010. I'm still active, have occasional pain but I'm maintaining it. Doc says I will always have this auto immune problem but it can go in remission. It's in my DNA. I can't prevent it. My mother had an auto immune disease and now my daughter has Crohns. It's just in the family. Yes, my hands are still stiff in the am and gets better as the day goes by. I'm at my Dr's right now. Bumping my Prednizone back to 5 mg from 4 mg. let's see if it helps. I'll be 62 in Zjuly and still kicking.
Is late-onset RA something that can occur in the 'late' stages of PMR (ie when pred is at low taper levels) and does it relate to the 'hand' pains that I have been going through ?
Is there something that my rheumatologist should be investigating beyond regular PMR treatment related to these other items you mention ?
Yes - earlier I used to take acetaminophen and ibuprofin when I was having a bad time, but I realized that all I was doing was covering up the condition and I didn't know where I was with the pred/MXT in relation to my PMR aches and pain. So I decided to put up with "it" and try to let the messed up adrenal system tell me what was going on relative to the medication.
I'll keep trying until I get down to zero pred but if things don't work I guess I'll get back to the over-the-counter 'pain-killers'.
They don't know whether it is a case of PMR morphing into LORA or whether it is simply a case of mistaken identity in the first place. LORA would probably also respond to the higher doses of pred if it weren't too bad but pred doesn't have a disease modifying effect so the LORA would progress in the meantime. Some of us on the forums think that when methotrexate works it may be a case that it wasn't "just" PMR but there was an element of LORA there too. You can have it without having any blood evidence - called sero-negative - and then it is next to impossible to distinguish from PMR. And of course - I have no doubt you can have both!
As I say - PMR can manifest in hands and feet too, it did for me and was the most disabling part of PMR pre-pred. It eventually faded but took a good 6 months and has never come back but I have had 2 major flares - or was the last one a real relapse? It has felt different in some way for the last 3 years. I can't explain it though.
You mention that for you it was the 'most disabling'. That is what is happening to me - I'm at 4mg, reducing in 0.5 mg or slightly less mg each month (trying to keep at 5-10% reduction depending on how small I can 'chop up' my pills) and the 'Hand thing' is really becoming an issue.
Did you make dose changes - like staying at the same mg. for a longer time or making a slight increase in mg. and holding that for a while ? Or did you just put up with the pain and keep on with your taper regimen ?
When I answered you earlier, I meant to SPECIFY Tylenol (of all things). You recently mentioned you might have to start on the "over-the counter" things for pain.
Advice: NSAIDs (all of them) are NOT recommended for treating PMR. Only Tylenol, apparently.
Yes - that is what my rheumatologist told me - acetaminophen (Tylenol) if you have to take something, and ibuprofin only if you really have a pain issue resulting from something other than the PMR aches and pains, but not to take ibuprofin with any regularity.