Hi all. Thanks for your time. I'm wondering whether it's usual for PMR aches and pains to spread through the body once pred has been started. Newly diagnosed, I've predominantly had issues with my right upper arm, right leg and both hips. Stiff and achy in the morning but walking and moving better by mid afternoon . Today however, I'm now experiencing soreness and stiffness across both shoulders. However, my hips seem slightly less stiff than usual! I've been taking 15mg of pred daily and obviously hoping for all symptoms to improve. So having pain in a new part of my body is disappointing. But is it normal? It's making me feel my pred dose isn't cutting it, but I obviously don't want to up them unnecessarily.
Cheers all!
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Newplodder
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Does sound as if 15mg is not quite enough, but have you given it long enough to work…..and are you treating PMR as the serious illness it really is? As I explained in my intro post I linked in last post…..it’s not as simple as take the tablets and it’s cleared up…you really do need to adjust your life style.
Give it a few more days with plenty of rest on your behalf, and if things haven’t improved then speak to doctor and suggest an increase…20mg might be what you need.
Yes, thank you. I had decided to wait before changing anything. I guess I'd hoped that having started on the meds, symptoms would at least not worsen, even if they didn't go away. Hey ho! Watching Wimbledon it is then!
If you have been on steroids for a couple of months they should have had their effect by now. A lot of people start at 20mg. Also are you overdoing things? Remember you have an illness and PMR does not allow you to carry on as if nothing has happened, just because you are taking steroids. PMR is life changing and you need to look after yourself and give into it. Never overdo things or you will suffer! It sounds very much as if you are on too lower a starting dose. Can you call your doctor and ask if you should increase? You can always reduce once you have hit the PMR on the head.
Thank you for your reply. I am a real newbie, and have been taking the steroids for almost 2 weeks, so will live with it a little longer I think to see whether things will improve. I'd hate to think I'm overdoing it!...less than 2 months ago I was hill walking, gentle jogging, regular yoga throughout the week etc I'm now reduced to a 1 or 2 mile gentle amble on a good day and some gentle stretching exercises ☹.
Yes, I am very grateful that I can do what I can do, having read some others' experiences. Being grateful and appreciating the positives is the way to go. Thank you
I'd postpone the gentle ambles for a bit. Not for ever.
Not suggesting it is, but increasing symptoms CAN be because it isn't "just" PMR but the PMR symptoms are the precursor to LVV or GCA developing. Even PMR can get worse/more active if it was caught early.
If you cut the activity - and be honest about what you are doing - and the problems continue to worsen, then you need to speak to your doctor, ask about the possibility that this may be more than PMR and trying a higher dose. Have you any symptoms that could be GCA?
Hello. Thank you for your reply. No, I don't seem to have any GCA symptoms ie no headaches or tenderness around jaws or temples etc. I do think I've reduced my activity significantly and am currently doing very little by my standards....some gentle walking to get outside and help keep the spirits up. And wgen I feel I can I suppose .....But it is difficult to gauge how much activity could be too much at this stage I guess. I reckon I'll only be able to eventually work it out for myself through trial and error
I was very active when pmr hit me. I was doing a combination of cardio and strength training about 9 hours a week. When pmr hit I went on 20 mg and basically stopped working out for several weeks as I felt to “not myself” and my shoulders were still feeling limited. Over the weeks I just listened to my body and stayed well within my limits. It seemed to work. Having said all of that when I dropped from 7.5 to 5mg my right hand flared up and it was a pretty big set bank on certain activities. So the answer at least for me is that “yes you can get symptoms that improve for certain body parts and worse for others”. At least that’s my experience. At this point I’m off meds but my hand is still stiff in the am. I don’t test positive for RA and my doctors don’t think best for me to be on prednisone at this stage given my symptoms are so isolated and generally my hand is good as the morning progresses. Hope this helps.
Thank you. How long have you been living with PMR?I hope I am taking a balanced approach. Not doing anywhere near the same level of activity I was doing even several weeks ago, but I am trying do some form of activity most days. I guess I 'm very concerned about the side effects of prednisolone, as it would seem you need to be taking them for years with this condition . So doing what I can myself take control and to preserve my muscle and bone health is where I'm at. Because I'd been having the pain in the same places before treatment, it threw me a bit when I suddenly had pain elsewhere. I can only cross my fingers that I am doing as much of the right things I can, so I can get off this med in the earliest time frame.
Good morning, a year ago I was power walking, working until I wasn't. My pain and aches came on quickly and suddenly. A year later my pain still migrates to different areas of my body. I tested negative for RA and initially tested positive for the antibodies but because my rheumatologist said he was getting a lot of false positives redid this test and it was also then negative. I started on 20 mg. and over the year I have maintained 10 mg and have slowly tapered to 7 but had flares so am now sitting at 9mg. I am glad I read this post this morning its a good reminder for me because I feel like I am having another flare coming on and realized that when I think about it mindfully I have been doing way too much.
Has your rheumy considered palindromic rheumatism? There have been a few on the forum - and it doesn't look like typical RA either. What you describe is what others experienced.
Hello. Thanks for your reply. Can you tell how you may have been impacted overall by prednisolone since your diagnosis? I'm quite concerned about the potential side effects and am highly motivated to do what I can to offset them.....if that is possible! I guess I'm hoping to hear from lots of people who have had a relatively easy journey and haven't ended up with ulcers, osteoporosis, unable to walk up the garden path or got obese! However, I guess those folk may not need to use this forum as much, so I'm hopeful those stories are out there....thank you again and best of luck to you
it seems to me your approach is entirely rational. There are unavoidable side effects which can be mitigated but not changed until off it. The skin on forearms and shins is thinned and delicate and bruised and damages easily. You will lose muscle mass and tone. You will get fat deposited in specific areas but how much depends on the individual. You will find your energy level fluctuates and you will need to adjust what is possible to achieve. You will be weaker and therefore not as capable of doing what you used to. Your corrective actions like trying to correct imbalance may be slow and you may stumble because the muscle responds slower. Your balance may be affected. all in all though these things can be managed if frustrating.
I haven't had an easy journey - I have a relapsing form of PMR and have been on pred for 13 years - but I don't have ulcers, osteoporosis (no bisphosphonates either), I continued skiing until another problem stopped that and during the winter I walked every day for at least half an hour - can't at present because of an achilles problem - have no sign of diabetes (Hba1c of 36), cataracts just starting but I am nearly 70, I gained weight with untreated PMR which then moved around on pred and then I lost 35lbs when I cut carbs, I'm overweight - but I have been all my life.
Most so-called adverse effects of pred can happen with PMR itself and can be mitigated or avoided altogether if you apply yourself and are lucky.
Hi Newplodder! Yes, the pain can move around especially if the dose is too low. Mine started in the neck, shoulders and upper arms. A month or so later it then moved to my hips and upper legs. I wasn't diagnosed for 5 months due to I tried to tough it out thinking I needed to see a chiropractor. Or maybe it was a better pillow? After the 2nd relapse I felt the pain and stiffness moved into my back both upper near the shoulders and lower back. Upping the dose knocked it out.
Well my take on this, for what it's worth, is you are trying to hard to go back to the way you used to be, which means you are probably doing too much. Pacing and napping help. Also you are far too worried about the side effects of pred after only 2 weeks. I have been on the pred for just under 2 years. I have had 4 relapses, due to covid vaccine &/or too quick of tapering. I had osteopenia when I started pred, it became osteoporosis for a bit but I am now completely healed in my back bone and improving in my femoral neck, now back to osteopenia. I combat that with drinking more milk, taking supplements, a few doses of bisphosphonates and walking. No ulcers. No diabetes, tiniest beginnings of cataracts but told it was normal for my age and probably won't notice for a couple of years. I lost a lot of my hair, about 1/3 but that could've been from the PMR as much as the pred. It is growing back, curly and dry but I am embracing the curl and learning a lot about managing it. Dryness combatted with lots of moisture nurishing ingredients in my hair products. I was on a keto diet when diagnosed with PMR, gained all the weight back with being on the pred. Started to lose weight when I was on a lower dose but with relapses gained it all back. 😱30 lbs! However, now I am maintaining not gaining. I had to go back to 15 mg from 4 mg this last time. Very disappointing but it had to be. I'm confident once I am back to the lower dose, I will be able to lose the weight again. Diet has had nothing to do with it for me. I think the activity level was the culpret. Extreme Fatigue! I also have had issues with breathing but as I taper to lower doses the better it gets. My husband used to say, "If your body needs the medication it will use it. It's when your body doesn't need it that the side effects become an issue." Also, had to learn the hard way to accept this is an illness that changes your life and learning to adapt your life style is a crucial key to less relapses and better chances for recovery! Good luck and be kind to yourself.
Thank you for your comprehensive reply. It is a steep learning curve isn't it? I shall take a balanced approach and hope the side effects of pred won't be too bad. There is lots to be thankful for already eg I have overhauled my diet and become focused on ensuring we eat well and healthily. I had always been reasonably good at this, but recognise more cakes and choc had started to creep in 🤪. Hopefully this change will benefit hubby too! Easy enough at this stage as my motivation is very high.....although I am confident I'll be ok in this area. Resisting going for a long walk on a beautiful day will probably be a bit trickier....although I know my body will punish me if I overdo it!
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