I am in my 5th year of PMR and am down to 1.5 mg prednisone. My last bloodwork looked good, so I felt confident in going from 2.5 to the current 1.5, over 2 months. I don't feel as if my PMR is returning but I do have lots of joint pain in the morning -- in my knees, hands and wrists. I suspect it is arthritis and that the prednisone has kept it at bay but now it is causing problems. It is painful with movement but not when I am just sitting or standing, and it is not bilateral pain. Also, as the day progresses, it gets better with movement and activity. Hence, my arthritis assumption. I am hesitant to increase my prednisone, but I also don't want to get into taking pain relievers, as they have their problems. Has anyone else had this happen as they decrease the Pred?
Is it arthritis? What to do....: I am in my 5th... - PMRGCAuk
Is it arthritis? What to do....
How were you at 2.5mg? Prof Dasgupta told us about 18 months ago in a seminar for the charity that he often keeps patients at between 2 and 3mg long term as it reduces the risk of relapses. If 2.5mg gives you the pain relief you need to function well, I'm definitely of the opinion that is preferable to 1,5mg plus painkillers (if they work). It is a low dose with few adverse effects.
There was a rather worrying article in the BMJ this weeks that “Even low doses of steroids increase the risk of cardiovascular disease in people with inflammatory diseases”. The article suggested that an alternative for long term steroids should looked for. The study had included people with both PMR and GCA. evidence.nihr.ac.uk/alert/l...
Yes saw that - but I think the most association was for RA patients wasn't it? CVD is a problem - but my a/f is better when I'm on enough pred. When the a/f isn't decently controlled life can be a bit unpredictable - I don't suppose anyone feels very spritely during an episode of a/f with a tachycardia of 130-ish.
We KNOW an alternative to longterm pred needs to be looked for - there probably already is one. But if you have PMR it isn't even a twinkle in someone's eye is it? Can't even have it for GCA except by jumping through a dozen hoops ...
The number of people checked with GCA or PMR was the same as the number with RA. Around 25,000. There were six categories altogether, the others were Lupus, IBD, and vasculitis. The authors reckoned that even 5mg or less doubled the chances of cardiovascular disease - AF, MI, Heart Failure, stroke, PAD, abdominal aortic aneurysm.
Ah well - my a/f predates pred. My risk of stroke is fairly low - on anticoagulant therapy. Risk of MI must also be reduced. a/f leads to heart failure anyway if it isn't well controlled. PMR and GCA are both associated with long term development of PAD if not well managed. GCA predisposes to AAA and it can - and should - be screened for.
And it recommends promoting mitigating factors: stop smoking and lose weight, Fairly standard advice isn't it? Oh yes - and there is a mention of the risk equating to that with diabetes. Now that probably isn't coincidence since there is always steroid-related diabetes to consider - so you'd think diet might also be a factor? Despite a rather random diet for the last 3 or 4 months my Hba1c is still 36!
My Hba1c is 39 so you have beaten me!! I suppose you cannot just take one individual with PMR and one without and say that the one with PMR has more chance of cardiovascular disease if you don’t also consider things like obesity, diet, smoking etc etc. It has to be simplistic when looking at a large sample, which can sometimes be misleading.
I was flabbergasted at my Hba1c! Really not been very conscientious about what I eat since October - rather more chocolate than usual.
I try not to have mine taken just after Easter!!!
Ah! Chocolate! Well done 👍😅xx
If it is arthritis, would have expected it to raise its ugly head on slightly higher doses…mine certainly did.
Follow PMRpro’s suggestion on increasing Pred and see if that makes a difference- but you could also request X-ray on affected knee & hand (you say it’s not bilateral) and see if that shows anything..
Do the painful joints feel stiff? I remember reading about PMR and the claim that it is stiffness which improves during the day, and thinking, no, PMR limits my movement because of pain. And it's bad in the morning, and also (before diagnosis and treatment) bad whenever I've been at rest for even a short time. I do have arthritis, confirmed by x-ray, and it does behave like you describe, but it's the stiffness which is more of an issue than pain. I only bring this up because I noted you didn't mention stiffness.
Also, put this in your back pocket for future reference, if it is arthritis please be aware that NSAIDS interfere with cartilage renewal. I think pred does too, but one doesn't have a choice about that. I don't need painkillers for my extensive arthritis, although non-medicated Flexiseq has been very beneficial in recent months, but mostly because I injured my knees. I've had osteoarthritis diagnosed since I was 40 and probably had it in my feet and neck before that. I'll be 75 this year and OA does not cripple me - yet! PMR certainly crippled me.
Thank you for this info re: NSAIDS. I had not heard that before. I'm not sure how to answer you about stiffness. My knees get very stiff and I know that is arthritis, My hands and wrists don't -- just pain.
I could be arthritis. And of course one doesn't want to encourage more pred to be taken if that's what it is. However, one reason I struggled so much last year was because I believed that a very painful shoulder was caused by arthritis, specifically referred pain from my neck, which I know has serious arthritis. I went to physio, did all the things one should do for arthritis. One day I threw up my hands in despair and took a much larger dose of pred and within a day or two the shoulder was miraculously cured! Since then the problem has not recurred, except when I tried to taper the pred too quickly. It's been fine for several months now, and I have been able to taper further at last. This experience has made me a bit less eager to blame osteoarthritis when new pain appears.
Pred has its problems, but it does help PMR. In some respects the generally less serious condition we call osteoarthritis is more difficult to treat.
Thanks to jinasc I've been using Flexiseq for my knees, and have started to use on my hands. I'm beginning to think if one isn't sure it's arthritis, it probably is PMR. I'm sure about my hands because I can see the fingers becoming misshapen. I'm sure about my knees. But I wasn't sure about my shoulder. I wanted it to be OA not PMR, and maybe some of it was. But the rapid relief, like starting pred for the first time, was a bit of a giveaway and once again I have to be grateful to Pred, my dangerous little friend!
Btw, for well over a year before finally diagnosed by a new doctor, both my doctor and I believed the serious pain I was suffering was from OA getting worse. By the time I did get diagnosed I literally thought I was dying.
Thanks for this....I woke up today really early due to the pain and decided today was the day to up my Pred. Only up to 3mg. My last best comfort dose was 2.5 so I thought I'd pop it up just a bit for a day or two and if that works, go back down to 2.5. I'm so sorry to hear it took over a year to diagnose. Had it taken that long for me, I would have wanted to die. What awful pain to live with. So glad you finally go the help you needed.
I remember one summer when a locum was looking after me (she had MS so was empathetic) stated the familiar mantra, "At least it doesn't kill you" and she was so taken aback when I responded, "But sometimes you wish it would"!
I hope you find .5 mg helps. Certainly when I was flaring, which in the big picture has not been all that often, last year was an outrider, I've needed more, but not for long. Hit it with 5 mg extra, then drop down to a level just above where the pain began to return. Personally I think that works better than trying with just a tiny increase. And I am speaking from experience because I've tried to get away with just a small amount. A person has to consider there is a reason why they are experiencing a flare, especially if they are on a dose they've been on for a long time. If it occurs after a taper, then it could be either pred withdrawal (should ease quickly) or too small a dose to manage the level of PMR activity (will gradually worsen).
I guess I just worry about you because I see myself back last January.... I wish I had hit the PMR with a decent dose for long enough, then tapered. Not necessarily a DSNS taper, but slower than a rapid drop back down. For several months I have basically responded to how I feel morning and evening. If fine, carry on, if not fine, take .5 mg more at next dose. Looking at my calendar I see this is unintentionally approximating the second half of the DSNS taper. I found 10 mg really worked, and usually only took one dose ot 10, then slid down rapidly. My mistake was not stopping at, say, 7 and slowing the rapid taper at that point. I was beginning to get into the dreaded yo-yo pattern and that's when I took myself in hand and slowed everything down. I did find I could never reach 3 without significant returning pain, and would end up going higher again. This pattern was broken in the late summer, after my Shingrix shot, when it became easier to taper for some reason. It was not without a hiccup or two, but never as bad as before and there has been continuous improvement since. Had the second Shingrix vaccination about three weeks ago and, touch wood, am feeling remarkably well. I'm now at a level I'll be happy to stay at for a while (2.5 touch wood).
I guess the lesson I learned was not to be afraid to use what seems to us to be a massive dose when we've been at the 1 or 2 mg level. Chances are it will help so quickly one will only have to be on it for a very few days, but then in my experience a sudden drop back to the old low dose tends to be disastrous. I do know many people find it works, however.
Thank you so much for your reply, HeronNS! So helpful. I took 3 mg this morning and already feel better a mere 3 hours later. I think I'll do best at 2.5 so I'll likely stay with 3 for a few days and then go back to 2.5 where I was comfortable. But I'll see how I am tomorrow and if not better, I'll go up to 5 and then start slowly back down. Again, your experience is so helpful. Thank you for sharing.
I did not know that about NSAIDS.With Stills pain, swelling and stiffness appear to be independent from each other some but not all of the time. As all my joints are affected, some less than others I feel cartilage should be protected so will not be using NSAIDS and just stick with codeine when I need time off from the pain.
You've had quite the journey! Thank you for sharing this. What biologic helps you?
May I ask which biologic please?
I am so similar in so many ways ,, its good to read your not the only one, So glad we have this forum .
Me, too. Without this forum I would have believed the rheumy who was pushing me to get off the pred after 18 months because that's the run of the disease timeframe! Thank goodness for my primary care physician who was willing to listen to me (and all of you!) and continue to prescribe pred. She is a lifesaver!
Ditto :/ On wrist pain, knees and ankles + spine (by the bottom)
Yes, but when I was around the 7mg mark. Specialist warned me that I may get more trouble with arthritis now the lower the pred gets. She was right, & I now have thumb splints, compression gloves, night hand & wrist splints, plus custom made orthotics in my shoes! I didn’t really want the extra diseases, but they come along, requested, or not! But your doctor should be able to diagnose, I was referred to specialist as I had an episode of of inflammatory arthritis.
Thanks, Pixix. I was just online this morning looking or compression gloves.
Um..not sure where you live…all the items were supplied free of charge to me at the hospital. Just for info! I think it’s important to have medical input on which ones to wear, & when to wear the different types, tbh! The night ones, for example, are actually to help my carpal tunnel syndrome, but they do help prevent my hands from being so swollen each morning!
I'm in the US, Massachusetts. I haven't been in the hospital so not sure where to get the recommendation. We just moved so I don't even have a new PCP yet.
Ah, OK! That’s different then. I’m in the UK. I was diagnosed by my doctor, then sent to a specialist at a hospital where I was assessed for which aids would help my medical condition. I guess I was just saying that because I use these items it doesn’t mean that they are good for you! You may have a different type of arthritis, or something completely different!! I realise you’ve just moved & that’s a hectic thing to do, but I’d really advise getting a medical diagnosis & not just start buying aids which may not be suitable, especially as you may have some completely different problem. Easy to assume, easy to Google or post on here, but seeing a doctor to get a diagnosis is better, I reckon! Good luck & hope you’re happy in MA. It’s a State I like a lot, having visited a couple of times!
Yes, I love Massachusetts. Lived on Cape Cod for 23years, which was heaven, but have moved up to Lincoln where our daughter and her family are. My husband has Parkinson's and had a terrible summer so we decided it was time to be close to family. I hated leaving the Cape but am thrilled to see so much of our grandkids 😍
Beautiful Cape Cod…we only spent three weeks there, but we loved it very much. We love nature & countryside, but due enjoy our long weekend in Boston, too. Sorry to hear about your husband, that’s hard when you’re not well yourself, but it sounds like the right decision for you. Plus the grandkids…a great bonus! Take care, S x
I’m also tapering to 1/1.5mg alternate days and have pain in my shoulders and especially my right wrist at the base of my thumb. No pain until I try to grab or screw a jar, etc and then the wrist pain is really bad. Have been using ibuprofen gel.
Me, too! Except the pain is on the outside of my right wrist. My ring finger on my right hand is the worst! That is clearly arthritis as it is swollen.
Yeah my fingers on my right hand are swollen but I've never been tested for arthritis.
Yes. I still take 1 mg but I am pretty sure my PMR is gone. OA in hands and feet. Better once you get moving and the only thing is to keep moving.
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