Hi, I have been a "secret viewer" of this amazing website with all it's valuable help and advice, since I was diagnosed with PMR in 2014/15. I have learnt so much and thank all contributors for their help with their first-hand knowledge. When PMR first hit me I couldn't even turn over in bed, or get out of bed without help, could only shuffle along, in so much pain, etc. until my GP (the fourth one I'd seen) diagnosed PMR and put me on 15 mg Prednisolone. A miracle!! Within hours the pain was all but gone. That is the good news. Since then I have had about three attempts at very slowly reducing the dose and a few months ago at 8 mg I was deliriously happy feeling incredibly fit and well. Next tried slowly moving down to 7 mg but pains returned and my bubble burst! Back up to 10 mg for a while, then 9 mg. Currently trying 9 and 8 mg alternate days but now am getting stiff and painful fingers and upper arms each morning. My question is, do I just accept this as maybe arthritic pain that has been hidden by the steroids, or should I increase the dose again to get back to being pain-free as I was before? Any suggestions much appreciated, thank you.
Aching fingers: Hi, I have been a "secret viewer... - PMRGCAuk
It could be steroid withdrawal. I'd be tempted, if I were you, to try a .5 mg reduction instead of the full mg. Others will probably advise you to get the pain completely under control again, but as you are unsure it's really PMR and - very important - provided it doesn't get any worse why not try waiting it out for a few days, even a couple of weeks, at 9 before proceeding with the taper? And make sure you aren't overdoing physical activity.
I tried the alternating dose thing and it didn't work for me. I found stretching out Dead Slow Nearly Stop was better for me.
It does get easier to distinguish between PMR and other pains. But to this day I have to consider dates of taper to figure out if I have withdrawal or PMR pain when tapering.
I have Rheumatoid Arthritis as well as PMR.
Since reducing to my current dose of 12mg Pred, the pain of RA has been uncovered. I was at 8mg but all hell let loose when my doc said I was going too slowly, I foolishly listened to him! Anyway, my RA pain is more in my wrists and lower arms with a weeny bit of tingling in my fingers. aWhereas the PMR pain is in my upper arms neck and shoulders as well as hips, and whole legs and feet.
The pain is different. PMR harsh and nagging and doesn't like movement or exercise. RA is just there, moaning in the background. I do not take Rheumy prescription drugs for RA. I take GP drugs, Codeine 30mg together with paracetamol 1000 mg at the same time, when needed up to 4 times daily. It sorts the RA for a bit of respite but doesn't touch PMR!
Did I answer your query? I hope so and all the best.
PMRandRA, doesn't RA cause joint damage and deformity (unlike OA which can damage joints but not as severely or as quickly)? Don't you need to take something to prevent that from happening?
I am "lucky" Heron. I have the R A which doesn't deform quickly. By looking at my hands you would never know and I queried the diagnosis many times with 3 different rheumies and got the same answer, which satisfied me. PMRpro said the same thing too which was most satisfactory! I would sooner believe her than any trained medic quite frankly! 😲
I also have Osteoarthritis, such fun eh? Which beast also causes growth, spurs and much pain. I have a few knobbles from that.
Oh yes, it sounds like you are "lucky" - kind of like all of us are "lucky" that we have PMR and not something more life-threatening! I have OA, and also have to attend to the density of my bones, but it was PMR which changed my life. I asked about the RA because I have a cousin who had very rapid changes to her feet from RA. She had to have two ankle replacements.
Oh good grief poor girl. I should take away the " " and just say lucky then.
I do have changes in my left big toe and the one next to it. Also I now have a bloo*dy great big bunion there. Not sure which affliction it is but will ask the Rheumy on 14th July. I kinda think RA because it swells hurts and diminishes. quite scary actually.
Her feet didn't develop bunions, the toes grew the other way, which is very abnormal. She explained to me that it was something to do with the rate of change. I have bad bunions caused by footwear when I was growing. They don't hurt me but they make getting nice shoes, or even comfortable ones, nearly impossible. My foot pain is in the top of the middle of the foot, and I don't seem to be able to get any help for that.
yes, my affected bones are growing to the left and causing the bunion. Other foot - perfect!
Shoes? let's not go there, rueful lol!
I get that top middle of the left foot too, but not all the time, it has moods! Also sole of both feet, hideous pain .
Thank you for replying, though sorry about your pains, too! I'm pretty sure these finger pains aren't PMR as nowhere near as severe and didn't have it in fingers when PMR first started. It almost makes me want to stop trying to reduce the dose if it's going to bring out other hidden pains and stiffness! Can't win, can we?!
However, I have read of not a few people with painful hands and feet who didn't have them before onset of PMR. I'm not sure if extra pred to deal with that is a good idea, as I don't know what actually causes the pain. It could be from the muscle weakness which pred can cause, in which case extra pred would be counterproductive.
More good advice, thank you. Maybe taking everything into account on here, I will stay on the alternate days 9/8 mg, hoping the finger pains will ease and I can then review my next move, which will be a levelling out and then maybe, just maybe a very slow and cautious further attempt at reducing!!
Thank you so much - my first two replies, and so quickly! Yes, I think I will hold back at 9 mg and see if the finger pain eases, as you suggested, and then go down even slower. It is so easy to get into thinking the dosage must be reduced, when the main thing is to find the right dose!! Thank you again.
Yes, hopefully you just need to slow down. This may help put things into perspective for you: I took one year to get from start of 15mg to 3.5mg., which is considered fast but I was all right. Much of that time I was using an adapted form of DSNS so I tapered by .5mg each time, but was able to complete taper of a full mg about every four to six weeks.
It took a second year to get from 3.5 to 1.5. If nothing else, PMR teaches us patience!
Thanks again HeronNS. Yes my Rheumy told me in April to reduce by a 'straight' 1 mg every six weeks, but I tried it a lot slower, then a flare (other problems to deal with), up to 10, and this last attempt I thought I'd do it 9/8 mg alternate days, thinking I should be ok as I had previously been perfectly fine on 8 mg. Wrong, it seems! More patience, as you said!
Ha, ha and thank you for confirming it's ok to exercise! Laughing, as finger exercises are the first thing I do when I wake up!! (Don't think my husband wants to join in!)
I should explain my adapted DSNS perhaps? I would drop by .5mg for the first part of the taper. Then in the middle there is a time where you take the old dose twice, a new dose, then the old dose twice again. At that point, on the second day of that old dose I would take the new dose, and then the next day, taper by a further .5mg. Thus in the middle of the taper my new dose became my old dose, and I had a new "new" dose. This enabled me to drop by a complete mg throughout the course of the taper, but I never had to go down by more than .5mg from one day to the next. Started doing that around 7mg I think. At very low doses I've just gone down by .5mg for the complete tapering period. At the beginning I was able to use the 4 day start, stop, later lengthened to six days. A couple of times I had to repeat a taper. But now I have a feeling that any increased pain is withdrawal, I push through it, and things settle quickly. Don't know if PMR is gone, but I certainly don't need much of a dose to control whatever residue there is.
So pleased to hear of your success and long may you continue! Yes, I tried the very slow method published on this website and that was how I got down to 8 mg before. Maybe this is just a glitch. Must stay positive!
I did try the alternating when at something like going from 2.5 to 2, or thereabouts. I found I just felt out of sorts all the time. I must be extremely sensitive to pred, because my body didn't want to deal with a constant daily change! I know other people find it's great. We are all different.
I agree..we are all different with different absorbent rates. I have taken 4 months to get to 6mg although I am experiencing intermittent pain the worst thing is still the fatigue.
At least stop reducing for the moment, stick at 9mg and see what happens.
I decided a long time ago that if I needed something about 8mg to control pain of whatever sort I would blame it all on PMR. That is a "physiological dose", about the same amount of corticosteroid the body makes naturally. 8mg of pred has far less associated grief than longterm NSAIDs for pain relief - especially if at least some of that pred is required for PMR!
Thank you PMRpro. It really helps to hear of others' experiences. Sometimes in the last two and a half years I've felt as if I'm self-medicating and 'on my own', bearing in mind the difficulties of getting doctor's appointments and only six-monthly hospital Rheumatology appointments. This website is like having someone with the answers without waiting for an appointment! I've weighed things up and think staying on the 9 mg dose is the way to go to see if these finger pains will 'burn out'. I certainly won't be reducing again just yet!!
You have 26 comments at the time of my post so I don't even know if you'll get to mine but I am very interested to see what your doctor comes up with. Because I have been horribly plagued with hand pain. I've already been tested in my worst arm for carpal tunnel and I have barely have any carpal tunnel in that hand certainly not enough to warrant the pain. But my biggest amount of pain is in my fingers and thumb. One orthopedic surgeon looked at my right thumb and said it has OA in it. But that does not explain why my left thumb also hurts and why my fingers hurt and even swell up at times. My rheumatologist has put me back up to 15 mg prednisone and still I suffer. She wants to do an MRI but doesn't feel that we will get an accurate picture with me being on such high doses of prednisone. And since I suffer from a great deal of back pain from another problem it'll be very difficult for me to do an MRI so we want to be sure to do it right the first time.
I'm sorry here I am going on about myself. But my point is you're not alone and I need answers as much as you do. I did test negative for RA but she went ahead and put me on medicine to treat RA and lupus just to see if it helps.
Please keep me posted on your progress as I will keep you posted on mine as well.
Thank you Amkoffee. So sorry about all your problems and wish I could offer some solution. If only we had all the answers so we knew the right action to take, or not to! I am going back to 9 mg instead of alt. days with 8 mg in the hope the finger/knuckle pains will go away. It is so frustrating, isn't it. Unfortunately I only have an appointment with my GP and won't see the rheumatologist until October, but I will update on here later if and when any progress is made. Best wishes for some relief soon.
You are allowed to go on about yourself....it is a safe place to have a moan, we need to at times. Just look after yourself
Oh that's good Camerashy, thanks! My family mostly live overseas and my husband has Alzheimer's, so I'm finding this website is becoming a bit of a release where I can get things "off my chest" and get really helpful advice and encouragement. I just hope I don't write too much that isn't helpful or interesting in return! Take care yourself!
It really doesn't matter - we most of us been there too for one reason or another and you have it particularly rough with your husband. Anyone who doesn't like it can look the other way, they don't HAVE to read.
If it helps you - that is what counts.
As PMRpro and others have said, just feel that you can come on here and get things off your chest. Sometimes just writing it down can be a great relief! Family and friends are all very well, but most people find that there are one or two family members and friends who really don't "get it", whereas most people on this forum will truly understand.
Just to add, I have bursitis, tendonitis and tendinopathy in various places with Carpal Tunnel Syndrome in both wrists. The swelling in the wrists compresses the nerves running through the "tunnel" where the nerves are enclosed, causing pain and pins and needles in the fingers. My knowledgeable GP has confirmed that for me, this is part of PMR. Like you, I also have upper arm pain which is worse if I do too much reaching up into cupboards, for example. Having recently increased my dose of Pred to deal with a flare, I am finding all the stiffness and pain are much reduced.
I hope you post again with anything you want to offload It's a juggling act getting things right for ourselves, but you'll always find kindly support and very helpful advice that will put you on the right track. What you post doesn't have to be helpful or interesting to anybody else, it's what matters to you that is important.
Thank you ClaireJG. My, what you are dealing with sounds tough! Do hope the pain improves soon. Like you, I decided to increase back to 10 mg to try and "zap" it and after three days it does seem to be slightly better, though a way to go yet. This is the third time I've had to do this and it's so disheartening after successfully reducing somewhat. I think I must try and accept that to reduce right down will happen only as and when my body is ready to!! Thank you for your support on here. It really does help!!
I agree, it is disheartening having to increase the dose. I find that if I try and rush things and don't remember the important advice re pacing, I know all about it for the next few days... I'm not sure if you have explored any of the posts re pacing, but I have found them invaluable. I was doing too much on my steroids, charging on through the pain, and didn't heed the warnings my body was giving me until it eventually forced me to slow down. I then had to increase my Pred dose, which was disappointing.
I was like you, on 9mg, and tried 8mg on one day, which I realised was a mistake, and then after my flare I went back to 15mg on the advice of my GP and have now got to 12mg. He wants me to stay there for at least three weeks in the hope that the inflammation settles back down again. Fingers crossed.
"Fingers crossed" Claire JG? Don't think I can manage that at the moment! 😉 Sorry you also had to go up again, and to 15, too. That is what I was on at the start of PMR and I really don't want to go right back again if it can be helped. My two previous flares were 'zapped' when I went back up to 10 mg and the leg, hip and back pains went fairly quickly. This time with the pains in my fingers, hands and upper arms it is taking longer (assuming it is PMR and not RA). Also noticed my hips are stiff each morning until I get myself moving and the steroids kick in about mid day. Will try to be patient and not expect miracles (which is what it was to me with my first ever dose of steroids!!) Thanks for pointing out about pacing, a good reminder for me, as I have never been one to take things easy. That was my problem I think when I got to 8 mg and thought I'd kicked the PMR into oblivion as I felt incredibly fit and well and so then did crazy things in the garden, etc. Then wham, made clear to me that it wasn't over yet, oh no! I've been on the 10 mg since Wednesday so not a week yet. Ever optimistic it will improve, as I hope you will, too. As you said, "fingers crossed" if you can!!
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