I have had some sort of terribly painful autoimmune condition and my muscles for four years now.
It sounds like PMR except if I take some supplements or some benzodiazepines or some types of pain medications like Tordal or hydrocodone I can get through the day pretty well except I can't walk very far or exercise or anything like that without increasing the pain far beyond the ability of the medications to control.
So my question is how many of you out there on the forum can do that with PMR?
I'm not taking any prednisone because of severe reactions to it.I have heard it said on here that PMR cannot be managed with pain medications. I also have no inflammation in any of my blood work
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jwb43
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Pain medications did nothing for my pmr. Would have been so pleased if it had. Sorry you are suffering. Some things go beyond ordinary pain meds . Steroids were the only meds that took away the crippling pain.
Our age group often has multiple things wrong. Pain medication helps with arthritis and such. However, the distinctive sickening pain of PMR remains untouched. I am relieved when my headaches ease with paracetamol because I can discount GCA. The inflammation is damaging to you and the stiffness is life limiting. That's why on balance I took the Pred. Especially as I think 1 in 5 patients see their PMR become GCA which is a medical emergency that puts your eyesight in danger.
I will never forget the astonishing effect of Pred on my condition, painfree and mobile in two days. Each side effect I have managed and of course the journey is to come off it gently as soon as the inflammation settles. I have had an amazing year caring for my little grandson. Without Pred I fear that I would just be " poor mum" contributing little but moans.
Sorry to hear you have severe reaction to Pred - what in particular?
I'm sure in days gone by many people got through PMR because it wasn't diagnosed, but what quality of life they had we'll probably never know.
I guess some people may get through without steroids, maybe through choice or mis-diagnosis or maybe a milder form of PMR. However I doubt many are on this forum, they probably see no need for it.
However if you leave PMR untreated by steroid you do run the risk of creating more problems. The inflammation caused by your underlying illness has the affect of not allowing the blood to circulate around your body as it should. That in essence means over time your muscles become weaker, less resilient, less able to support your body. It may also affect your head and body arteries (by which time it becomes GCA) If your head arteries are affected it can cause blindness, strokes etc.
Not everybody who has PMR or GCA have raised blood markers, but that doesn't rule it out, symptoms are the key.
Of course it's your choice entirely, but please do think through all the possibilities before you reject it completely, and continued use of other painkillers may do as much long term damage to your body as the Pred.
I haven't met many who found that ordinary painkillers did more than take the edge off the pain, if that. And for most of us, it tends to be of the pain for the add-ons rather than the PMR itself.
There are things that are often found alongside PMR that in some ways mimic the pain - myofascial pain syndrome, piriformis syndrome for example. These sometimes do improve with painkillers - PMR itself rarely does.
I spent about 8 months using only painkillers before I was diagnosed with pmr and started prednisolone. At that point my blood markers were only very slightly raised, so really my classic symptoms gave the diagnosis.
I found the painkillers (mainly co-codamol) just about took a bit of the edge off the pain, but I would still seize up after just a few minutes of inactivity, and regularly had to roll about on the floor in order to get myself up out of a chair. Getting up and dressed in the mornings took literally hours.
I suppose I could have continued, though with a very limited scope of activity, but the worry about what damage the inflammation might do to my system if left unchecked was enough to persuade me that I needed steroids.The side effects I've experienced are extreme hot flushes (subsiding now I'm down to a lower dose), moon face and weight gain (but I know I'm not strict enough in limiting carbs), tearfulness and being prone to get into a panic over silly minor things (also subsiding now), muddle-headed thinking and forgetfulness. As far as I can tell (from dexa scan at the outset) my bones are ok.
How serious are your side effects - and when you had them were you on the sort of doses used to treat pmr?
Hi, Has a doctor diagnosed you withPMR? I found on my journey to diagnosis the doctor did tests to rule other issues out. Also - is your stiffness/pain worse in the morning? Bilateral? Those things help point it towards PMR I think. I started out treating myself with naproxen- taking it constantly was the only way I could survive but I really did a number on my stomach and if i had continued I would have really done some damage. I urge you to explore what's going on. Start with you primary care physician/GP and move on from there. I wound up seeing an arrogant orthopedic and then a physiatrist. She knew what it was, ordered bloodwork and handed me off to a rheumatologist. I would urge you to follow through with doctors to see if they can figure out what's going on and get you on the proper medication. If it is steroids that's needed you might fair better with one of the others rather then straight prednisone. Good luck, keep us updated.
Bad idea. I must of got the PMR at least 8 years ago and thought it was just fibromyalgia getting worse and I did turn to otc pain meds and finally got viciodin but 2017 I thought I was dieing because I was getting sicker. I now know the stuff in my head was gca. It's possible if I was properly diagnosed I would not of gotten gca and now in a much worse position. Treat it correctly because it will progress.
You still do not say what your side effects are. Of course if you stop taking it the pain returns but Iif you read through many of the letters on here we all have different side effects, some long term, some short term, some horrendous and some positive but as much as we all hate this drug with a vengeance it is the only thing that takes away the pain. In all honesty I would ask the guys and girls on here if they can give you any help in dealing with the side effects. Or if anyone can recommend another course of medication you could ask your GP about.
After four years and saying probably 30 different doctors I've tried just about everything. My side effects from prednisones are very bad heart palpitations,. A feeling of sickness like I have the flu extreme sweating, muscle weakness, agitation anxiety nervousness shakiness and the overall feeling of impending doom. There's probably others that I can't remember now. But believe me it was about the most miserable I've ever been.
I've been reading a lot of posts on this forum for a long time and there is so many people that seem to be forever stuck on prednisones and having cataracts of diabetes and all kinds of other bad things that come with it. I don't know if I'm just trading one illness for many other illnesses or potential illnesses. At least for the time being I can control the pain with pain medications as long as I don't do anything. That's the most frustrating part is I can't go for walks I can't work out at the club or go swimming or do anything that remotely causes me to stress my muscles because if I do the pain increases tenfold.
I have no inflammation markers in my blood work for the last four years it just boggles my mind and my doctors minds. Next they want to try it for globulin infusions IGgi. . Also I'm going to get a muscle biopsy which scares me because anytime I injured one of my muscles the information that comes to that area makes the pain extreme.
I've tried methotrexate and I'll kinds of other DM RS whatever they are. I just want to be able to go for a walk with my wife again. Sit for more than five minutes comfortably without my hip starting to hurt. Be able to lift something so my wife doesn't have to lift everything for me. It's in every muscle from the tips of my toes to the top of my head it hurts constantly and the more I do the more it hurts
I get muscle cramps a lot at night and my muscles are gradually getting weaker since I can't use them. But I still can get up get myself dressed shower myself and go to work even though I have to have a lot of pain medication and pain creams and special chairs at work to get through the day .
OMG, how awful for you, how down you sound. It must be an absolutely horrendous to be in so much pain and nothing can help. I was 5 months before being diagnosed and taking the dreaded Pred, but I could not go back to that pain. I dreaded sitting as I knew I would be bent double for a least 15 mins, or driving where I struggled to walk when I got out the car or open the door!! Pred for me has allowed me to fill the kettle and drink the cup of tea, to get in my car and drive, to be able to get in bed without struggling with the pain on laying down or having to spend 10 minutes or so trying to get out of bed. To have a sort of normal life has far outweighed the tearfulness, the agitation, the horrendous mood swings, the water retention and equally the rushing to the bathroom. Yes I get down, so very desperately upset with the weight gain which has increased so much more as I have reduced, but I am thankful for that drug, it has given me back my life, I now am back to Zumba, I walk daily I can bend down to take my pictures (photography is my hobby) it is not easy, and as I reduce the pain is always underlying but I really think with this bloody disease we have to fight the disease and then the side effects of the drug.
Maybe you already have tried to drop to a more acceptable dose once the pain has gone with the initial dose, for cramp I would suggest the magnesium spray tingles the first few times when you use it but is great for nighttime and daytime cramps and maybe something I also tried was an anti inflammatory diet, very similar to a Mediterranean diet. I have tried everything in conjunction with the pred. Massage helped me, as does swimming. We all react differently to this disease and treatment, I am now down to 2 mg from original 40mg dose, (which made me very hyper, staring eyes, upset stomach and was so so hungry all the time) hoping to be steroid free by end of October (2 years total). I wish you the best, try everything and anything something must help.
A recent study has shown that, apart from cataracts, patients with PMR and on pred have no more long term problems than people who haven't taken pred.
Many of the side effects you describe would probably settle down if you stayed on pred long enough - and splitting the dose might also help. There are 3 different forms of corticosteroid and most people find they have different side effects - I had/have none with prednisolone and prednisone, methylprednisolone was hell on earth. But it didn't stop me taking it.
PMR Pro, it's very possible that it is not PMR. When I take prednisone it does help the pain but not to the extent that it seems to help everyone else on here. I get maybe 80% pain reduction and 90% stiffness reduction.
But if I continue to take prednisone I don't believe I'd be able to continue to work. My muscles got so weak I couldn't hardly stand up. And this was at the three-week mark.
Also my doctor and cardiologist were concerned about the amount of arrhythmias it was causing me.
Thank you for your input I'm thinking of getting the muscle biopsy and trying the IV IG infusions.
Do you know if a muscle biopsy would definitely give a PMR diagnosis?
No, anything over a 70% improvement is a reasonable expectation. Don't misunderstand what people say - very few of us are totally pain-free. But the difference that pred makes is night and day in that we can function. I couldn't even toilet myself at times - at 51 that is not a pleasant status believe me.
A muscle biopsy won't confirm PMR - but it will rule any form of myositis in or out. But that would be suggested by the blood tests they are supposed to do in making a differential diagnosis of PMR - muscle enzymes are raised because of damage to the muscles, they are not raised in PMR.
You said it took five years I think before you were diagnosed? During those five years did it continually get worse and worse? Were you able to function up to a certain point when it got too bad? Stop was
I don't think it continually got worse and worse - it was bad and there were a lot of things I couldn't do. It was only when I was stopped driving (for another reason and wrongly) that I realised just how disabled I had become. I had carried on fairly well because I could drive places and do things and just collapsed when I got home. I left bringing shopping in to my husband. I was certainly never out of pain and VERY bad tempered And permanently exhausted. Mon to Fri I did an aquafit class - and after that I could move almost normally for a while. Without the car I couldn't go to the gym - and then I became pretty much housebound. We had also just moved to a house with only one bathroom upstairs. No downstairs toilet. That was utter hell - I could be upstairs with the toilet but no food or I could be downstairs and have to crawl up the stairs on hands and knees to the bathroom.
I have had 3 or 4 flares on top of the basic level of PMR - and when I have a flare like that I am out for the count, can do very very little and the pain is excruciating.
With pred I am almost back to normal. I don't CARE about potential side effects. I can live now - I will be dead a very long time...
Thank you for sharing your experience. Sounds much different than my condition mine started out after surgey and has moved to almost every muscle I have. The more active I am the more it hurts. I only function because of pain meds. I guess if they come to a diagnosis of other types of myopathy the answer is still prednisone.
There is a report of someone developing PMR after surgery - they suspect due to the triggering of the release of the inflammatory substances.
I'm suspicious it might be something else because during the 5 years I had PMR with no pred the ONLY thing that relieved both stiffness (in particular) and pain was a session of aquafit in a warm pool every morning, i.e. activity, once I could move at all, helped.
When this subject comes up it's amazing how many of us can point to a severe physical trauma as the kickoff for PMR. I don't think it's the only thing, lots of people break a limb or have surgery and don't develop PMR, but in some people it does seem to be part of the trigger, often associated with other stressful events.
Yes I agree completely. I had three surgeries in a year and each time I had a surgery my condition worsened a lot. So obviously the stress mental and physical obviously has something to do with activating and exacerbating the condition. Had I known this would happen I think I would never have had any of the surgeries and just live with the conditions that those surgeries Were Meant to fix. Cuz this is much worse
If you needed the surgeries then you needed them. But it's so unfortunate that what was happening to you as a "side effect" wasn't recognized. Still, onward and upward, and I hope things are getting better now.
Dear jwb43, I too put my stiffness down to a recovery process after a spinal surgery to release a trapped nerve. But as the previous replies I don't think many of us are totally pain free but the improvement is so great we think we have our life back.
Do you think that you worry so much about the side effects that a panic sets in when you take them. I was awful on 40mg but after a couple of weeks the doctor dropped me down to 20 mg and we worked with that as a base number. The rheumatologist told me that trauma (surgery) could be a major factor as is stress.. which I think most people have when having surgery. I really feel for you, I hated living with that pain for 5 months plus I cannot imagine what you must be going through.
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And permanently exhausted. Mon to Fri I did an aquafit class - and after that I could move almost normally for a while. Without the car I couldn't go to the gym - and then I became pretty much housebound. We had also just moved to a house with only one bathroom upstairs. No downstairs toilet. That was utter hell - I could be upstairs with the toilet but no food or I could be downstairs and have to crawl up the stairs on hands and knees to the bathroom.
we can t change “ our PMR” but we can change how we relate to it and manage it.
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