I was just diagnosed with PMR Friday Oct. 24th. I have been is a lot of pain for the last two weeks and they have been thinking it was just my degenerative disc Disease, but after getting blood results back the doctor says that it is PMR and I will pick up my Steroids on Monday. I have already gained at least 20 pounds and now I am worried about gaining a lot more. I am also wondering if my quality of life will improve because I have been so tired latley that I cannot accomplish anything. Thank you!
Hi Pam,
After starting with steroids you should have a lot less pain almost immediately I have been on steroids since last March & have only gained 5 extra pounds. My guess after a fairly short period of time you will start feeling a whole lot better & yes quality of life gets better. Hang in there.
You will feel better with the intake of prednisone. lt depends at which mg level your doctor will start you out. I was diagnosed with PMR 4 months ago, and since then I have had at least 3 painful flares, until I showed my GP the slow tapering this website recommends. He did agree with a slow taper from 30 mg to reaching 15 within a month period. I was in much pain in my lower pelvic/girdl area that I had trouble walking. I was also VERY tired. Since these last two weeks having been on 15 mg, I feel fine and I can walk. --- So there is light after the tunnel!!! Hang in there, Prednisone will make your life livable again.
All the best.
Hi Pam. I have had PMR for a few years now along with Psoriatic Arthritis and a few other bits and pieces ........I have taken steroids for the past 3 years from 30mgs per day to 5mgs and I am now on 5mgs per day as a maintenance dose......I have to watch what I eat !!! But have only gained 6lbs in 4 years .........with my mobility the gym is out of the question and walking can be very difficult .........I check the food labels on every thing when shopping and if I go out to eat choose very wisely............yes I can't eat what I did nut that's. It a bad thing I am 8st 5lb age 66 so good luck with the tablets and hope you feel better soon.........you will with the steroids they are wonderful..........GOOD LUCK
I had a similar experience - I put on weight BEFORE the diagnosis because I couldn't exercise as much about 14lbs probably). Once I started on pred it redistributed to the typical places: midriff, back of the neck and face, but I didn't put on much more, if any. I did put on a lot of weight as well having other side effects with Medrol which I was switched to when I moved from the UK to Italy where ordinary pred isn't available. But I have lost all that weight since being switched to another form of prednisone (that iS available here but only privately in the UK). It does depend on the person and the form of pred - some people LOSE weight on pred though they are the minority. Avoiding carbs as much as possible does seem to help with pred-associated weight gain as well as helping to avoid the risk of pred-induced diabetes.
Are they sure about "degenerative disc disease"? I was told by an orthopod that that was the cause of my low back pain - in fact it turned out to be muscle spasm, my entire back muscles were as hard as a board. Once THAT has been dealt with by physiotherpists, massage therapists and cortisone injections from the pain specialist I saw here - no back pain from that source.
You WILL have a better quality of life because the pain and stiffness should improve dramatically - and if they don't then it isn't PMR and your doctor should consider again since there are no 100% accurate tests for PMR. Whether the fatigue will improve as much is another question, that is due to the underlying autoimmune disorder that is causing the PMR which are symptoms not the actual illness and which pred does not affect. The fatigue will improve in the long term - whether it will in the short term is another question. And just because you feel much better with pred - DON'T go catching up on what you haven't been able to do recently! That way lies trouble - you have to learn to rest and pace yourself to accomodate muscles that are intolerant of exercise because of the autoimmune problem.
Follow this link to find further links to sites and another forum with loads of useful info and things:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
This should read - Yes I can't eat what I did before but that's not a bad thing.......I am 8st5lbs ect......my iPad at times does it's own thing - sorry - hope all turns out ok Cat Lady 66
30 to 15 in a month ISN'T a slow taper! But the right starting dose for PMR is 15mg so that isn't so bad!
Thank you that us very encourgeing. I have never been successful with watching what I eat but I am hoping to have the willpower to do better. I am looking forward to feeling better soon.
I also have to watch what I eat ....I have always had food allergies which might effect my RA and as of late PMR in a way. I do choose anti-inflammatory veggies and fruits like celery, dark cherries (frozen), blueberries, pineapple etc. Organic chicken and wild salmon are the choice of protein. Being invited by friends for dinner, and going to restaurants to eat can create a problem not knowing what the exact ingredients might be in connection to chemical additives like MSG etc.
I agree with you.....steroids are wonderful!
I was in such pain.....my GP recommended 30 mg for a week (it helped NOT to split it like I did before as of your recommendation), then 20 mg for 3 weeks helped me to be able to walk again and to achieve the 15 mg I have been taking for the 3rd week. I will continue with the slow taper Bristol recommendation of another three weeks with 15 mg, then 12.5 mg for 6 weeks...and then 10 mg daily for a year. It is worth a try! All other short taperings did not work.
Thank you I am looking forward to not being so tired and stiff. I really miss not being active with my three grandbabies as I used to be. I guess I will find out Tuesday when I start taking my medicine if PMR is what I have. From what I have been reading I will be able to tell a difference within a few days if that is what it is. If not I guess the doctor will try something else
Can't wait to start on the prednisone so I can feel better, but the nurse did not call me until Friday afternoon and she said the doctor did not tell her the mg dosage so she would have to call it in Monday, so I guess I will start it Tuesday.Will I ever be able to come off of the prednisone or is it something I will have to stay on for the rest of my life?
Thank you this information is very helpful knowing that some foods will help with inflamation, I will look into that further. With me already being overweight I know I will have to change my whole life style and that is really scary
They looked at a ct scan and mri and that is what the doctor said a couple of years ago, but it would be good if they were wrong and all along it has just been the PMR. I am worried that with already having thinning bones that the prednisone will make that worse. I am looking forward to start taking the prednisone to see if all this pain and stiffness will get better so that I can get back to enjoying time with the grandbabies.
Prednisone is good, and it is important that you enjoy the grandbabies. My granddaughter is now 9 years old, and I am so happy that I could hold and carry her while I did NOT YET have to suffer because of PMR. Now, I am just happy to be able to walk without pain to pick her up from school and take her to her swim lessons. Prednisone is making this possible. Soon, you will feel better, too.
At least they have evidence then - but it doesn't alter the fact that muscle problems add to it and can cause a lot of pain on their own. Worth asking a physio or a Bowen therapist if they think there is anything they can do to help.
Well I have a few more questions. Since a high sed rate could be a number of things and I do have degererative disc disease how does the doctor know that it is PMR? I picked up the prednisone today and he has me taking 6 -10 mg tablets for three days and dropping down tablet every three days untill I get down to 1-10 mg tablet a day until I go back to him on Nov. 19th. How will he know which it might be if the prednisone helps with inflamation will it not help anything causing it while possibly covering up the real problem. I am just still really confused on why he started me on this high of a dose after only one visit. I started taking it today and I know it is not enough time but I am still in a lot of pain. Is 60 mg to high of a dose to start on?
Why he started you on 60mg? No idea but he's a bit out of date at the very least and at best has merely confused PMR and GCA. Even a few days at those high doses can cause a fairish bit of weight gain and those are the sort of doses where people get as high as a kite. The silly part is that if it is PMR it should respond dramatically to 15 or 20mg, you only need 60mg if there is any suspicion of GCA - but the way he has told you to reduce would be disasterous in GCA so i don't think he does. The main problem is that there are other things that would respond to such a high dose, only PMR responds to the moderate 15mg dose.
Anyway - degenerative disc disease doesn't cause inflammation that will raise your sed rate. The diagnosis of PMR is made on the clinical picture and the sed rate is just an aid - there are things that cause similar symptoms but wouldn't raise the sed rate. PMR symptoms are basically stiffness and pain in shoulder and hip girdles, fatigue, morning stiffness lasting more than an hour, a feeling of having flu and mild sweats often are found. Many people lose weight.
Had he started you on 15mg he would have had a far better indication of whether it really was PMR and not something else. You are quite right to wonder whether these massive doses would mask other causes - especially other arthritises which DON'T respond to 15mg but will respond to 60mg (there is a graphic showing that in the paper I'm about to recommend to you).
Personally I wouldn't take those massive doses for the next 3 weeks. I would print out the reference you will find in line 8 the first post on this thread on this site
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
This is a paper written by the Bristol group who are top people in both PMR and GCA. They explain their diagnosis and treatment of PMR in detail to assist GPs manage PMR better in the practice without needing to send patients to a hospital consultant.
I'm sure you can read and understand a lot of it - certainly the way they decide if it is PMR (using a pred sandwich, giving vit C for a week, 15mg pred for a week and then vit C again). If it is simple PMR the symptoms will reduce by about 70% within a few days and then will return in a similar time frame when you stop the pred and start taking the vit C again. If you struggle with it - the GP shouldn't have any bother with understanding it at all. Unless he doesn't like being challenged and/or advised.
If he isn't helpful, try another member of the practice. You shouldn't have to cope with such high doses of pred if all you have is PMR - and if it isn't PMR it needs something other than pred.