I have had what I think is PMR for many years. I think it sort of went away but now it is back. I'm taking 15mg a day and it is not enough. The dr refuses to let me have more, so I am nearly dying every day with pain in my shoulders, hips, legs, all over. I cry over and over when I try to do house hold things. My SED rate is 58. I don't know if that is high, but it sure feels like it is. Every week or so I become desparate and I take a double dose of prednisone, and that day goes better, I noticed, though still in pain. Needless to say I come up short at the end of my dosage for the month and have to really suffer for a day or so before I can get my next month's pills. I am to see my rheumatologist on the 12th. How can I talk to her? Is it true as she thinks that I don't have PMR? I know I also have fibromyalgia, arthritis, and a iffy back. But this PMR pain is recognizable in my opinion. Is it in yours?
What would you do?: I have had what I think is PMR... - PMRGCAuk
What would you do?
In answer to your last question, the bilateral pain you're experiencing is certainly indicative of PMR. Who is refusing Pred? GP or rheumatologist?What you are going through is horrendous and you should not be left in this position. Please come back for replies from others.
One day I took (accidentally taking two doses) 38mg of pred. By noon I felt brand new. I felt actually as if I were a human being again, the same ole gal I've always been in the past. Oh, it was so wonderful. But when I told this to my rheumatologist she pooh-poohed it and said I didn't have PMR again. I could cry! I have tried to ask her for a different dr, but my town is not so big and she is supposedly an expert. What is wrong with her? It is true that I have had back problems and this she points to as caused by pred. So what do I do?
The struggle you are having with your rheumatologist is getting you nowhere. She obviously knows little or nothing about PMR and is uncooperative to say the least. I don't know anything about the US system : here we can call 111 for advice but I'm not sure that you have anything that's equivalent. If it's difficult for you to see another rheumatologist I strongly advise you to go to the emergency room. If you go down this route you should prepare a note beforehand describing your symptoms and the difficulties you are having in your everyday life as well as how it's affecting your mental health. This will enable you to organise your thoughts so that you don't leave anything out.
I have every sympathy for you and the awful situation you are in. Please keep in touch here. x
Are you saying even at 30mg you still are in some pain?
That’s awful to be left in pain and having a doctor unable or unwilling to treat you appropriately. If it were me I’d be looking for a new rheumatologist asap. Let us know how you get on.
Well, I have to say I’m confused by this. You’re in pain and you have a rheumatologist. She is prescribing prednisolone. If she says you don’t have PMR, what is her diagnosis? You deserve and need a proper explanation of what she believes the problem is. And……since your prescribed dose is not adequately dealing with the pain, what are her further suggestions for medication?
I hope you get some answers - I do not think you should be suffering as you are.
Good luck and let us know how you get on 😊
Nextoneplease x
It seems like one of two things need to happen. Either you are given a larger prescription so you can see how you do with more than a day or two at a higher dose and if it really does help (no more than 30, mind you) then it would tend to confirm your feelings. It's possible with the length of time you've been suffering that it would take a few days for 30mg to be really effective. Or the doctors come up with a different diagnosis and effective treatment for same. There is no point giving you pred if it isn't controlling the symptoms - that way you have the disadvantages of the medication but with none of the benefits.
Have they run all the proper tests to rule out a "differential diagnosis"?
And as has been pointed out many times on this forum, a second bout of PMR is not unusual and often presents quite differently from the first time.
She thinks that my main pain is from fibromyalgia. But I have had fibro since I was 30, I'm now 67, and it is not the same pain. Also she is terribly worried that pred has caused the fractures in my back. These occurred very near to the date I started pred for PMR, diagnosed by the previous rheumatologist (who since died), so I wonder if pred caused it or my arthritis. I don't know. She would rather me suffer all this pain than have more back problems, I think that is her worry. My wish is to live until I am 70 and have three years of no PMR pain and after that die!
Morning Travgrrl so sorry to hear you are having such a rough time. I can't see that your back problems were likely to be linked to Pred if they happened when you had only just started it. I would have thought that those effects of the Pred would only come into play after a far longer Pred journey. All the medication that we take can/does have adverse effects, more for some than others, which has to be acknowledged and understood. However quality of life is also important. If your Doctor/Rheumy is unable or unwilling, for some strange reason, to give you you an alternative diagnosis of your problems with a course of treatment that keeps you out of pain and gives you a reasonable and acceptable quality of life then you need to insist on seeing someone else. If bumping you up to 30mg ( where I started) for a week then 25mg for a week then 20mg followed by one of the long tapers works for you then that is, what in my non-medical humble opinion, she should be trying. Has she suggested any tests (DEXA for one) for bone strength or other possible problems? If you are unable to her or your doctor soon and the pain is still that bad, then a trip to A&E or walk in centre might get a better result. Being able to take a friend/partner who can help explain/insist that something has to done might also help.
Thank you so much for the shared experiences. I would like my dr to read these, if only she would open her mind to them.
Thanks for your post. I tried Actemera but developed an infection in my leg and had to stop it. The infection was pretty bad, so I'd worry about trying Act. again.
As regards your ruinatologist and so as to help you understand what you are dealing with, just remember these two things: (1) What's the difference between a rheumatologist & God? Answer: God doesn't make out to be a rheumatologist! and (2) Just like those little cuddly kittens & puppies you see advertised around Christmas - An autoimmune disease isn't just for now, it's forever! Ho Ho Ho!
I'd agree that could be a possibility if you just have the odd one. However from my own perspective and being the proud owner of umpteen autoimmune diseases (ADs) since 1987, there's not much chance!
PMR isn't the real illness - it is the name given to the set of symptoms and there are several underlying causes for them. Once the others have been ruled out and if it responds to pred then it is reasonable to plump for PMR as we mean it. However - one of the criteria tends to be response to a moderate dose of pred - i.e. up to 25mg, exceptionally 30mg.
What your rheumy DOES need to do is test you for the alternatives because sometimes patients go on to develop other things with a polymyalgic presentation - not least GCA or LVV (large vessel vasculitis). In other cases it may be a type of inflammatory arthritis, there are several. If you can deal with the pain with pred, it is VERY unlikely to be fibromyalgia as that is NOT inflammatory - and whatever you have is definitely inflammatory since your ESR is very high, 20 is the top end of the "normal" range, and your rheumy MUST react to that and find out why.
I wouldn't stay with her if she isn't willing to work with you - but I do appreciate the problems.
my sed was way over 60@s and now 2 you are high. I'm still on 30mg at 3+months on. Have GCA as well. Just boosting dose every 2 weeks is disruptive and not ong enough to get a pattern of recovery. Sounds like you need more for a period to stabilize. You know your body. One is tempted to ask them if THEY want an "out of body experience"
Well, for two days I have taken double my dose, that is 30mg of prednisone. Yes, I do feel better. But I still have some irritating pain in neck, shoulders, back and ankles etc. I thought I would feel much better. I guess I'll keep it up for a few more days. My appt with my rheumy is the 12th of October. I'd hate to take more. What do you all think?
In my experience it takes more than a couple of days to get pain to calm down. And the neck, shoulders and back pain may need a bit of help - therapeutic massage does the job for me. Low back is 800mg ibuprofen and a hot water bottle but it isn't so easy for upper back - but it is all tight muscles.
Well, I went to see my rheumatologist and she refused to add to the 15mg of pred. I cried, but accepted it and have been on 15 for two weeks now. I am not my best. My arms, shoulders, and my sides and legs hurt so much, but I can exist. Just a little more depression, though, which is sad. There seems no hope in my heart.
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