Still questioning!
Posted , 13 users are following.
I was Diagnosed with PMR last March 2019. I woke up in excruciating pain called my doctor. I went in to his office that day he did a blood test, called me that night and told me I had PMR and put me on 60 mg of prednisone. I have been trying to reduce with only a slight flareup last summer then a very severe one at Christmas time.
Here is my question. Sometimes I’m not convinced that what I have is PMR. at the same time I’ve been diagnosed with the generating discs in my back and I question that it might have been my back at Christmas time. I read everyone’s story here and everyone is in such pain all the time I’m not in pain. I did go to a rheumatologist as you people advise me and he says I do have it. But still everyone is in such pain and I’m not. At this time I am reduced to 7 1/2 mg and a bit scared to go down to seven because that’s where I had that “” flare up" . Is it possible that because I was diagnosed the very first day I had pain, it was very severe , that I don’t have a problem like everyone else? Because I was diagnosed so quickly?
You are all so kind and understanding, thank you very much in advance for your input.
1 like, 6 replies
rosarita76 exie61964
Posted
I feel the way you do. At times I question the diagnosis, I have osteoarthritis and I wonder if that's what caused the initial pain. Arthritis also raises the inflammation levels, so that could have been the cause. I have had so many horrible side effects from the steroids that I hope this was all not for a faulty diagnosis of polymylgia rheumatica.
BettyE exie61964
Posted
I don't think it is likely that PMR was diagnosed solely on pain. What were your ESR and CRP levels? Not that they are necessarily conclusive, either. I was first diagnosed as having arthritis in the spine and it wasn't until I remembered to tell a different GP that I'd unusually lost weight that she ran the blood tests and decided, correctly, that it was PMR.
60 mgs. would be an unusually high starting dose unless you also had symptoms of GCA ( inflammation threatening your sight. )
Once I was diagnosed my GP started me on 30 which, when I got PMR for a second time he said was a bit too aggressive and prescribed 15 but, although I did have recurrences of the pain, and upped my dose form time to time, getting to zero in three years first time and five the second, was comfortable most of the time and I would think that is true of most of us on here.
It is common for pain to return around the 7 mg. level and I believe that is because our body has become reliant on the drug and has stopped producing cortisol and has to learn to adjust. This can take time and yo- yo -ing doses are common.
I am merely quoting my own experience; others may have differing opinions.
missmagwumps exie61964
Posted
I too was suspicious that my diagnosis was correct and my rheumatologist was very cavalier about it all....to be fair he did numerous tests/scans/MRI's etc to rule out certain things and them promptly ignored all the scan results of spinal problems as my Bone Density scan was fairly normal for my age......despite my having factured vertebrae in 3 places etc....
Unfortunately I had every side effect known to man with the Prednisolone and it made me very poorly, causing severe palpitations amongst many other problems....I was worse than before on the pred and like you, my symptoms were not consistent with PRM as described by the other poor suffers on the site....
So I suffered 9 months on Preds but weaned myself off in record time and things are stating to get back to normal - Apart from I am now starting the process to sort out all the problems going on with my spine......but am so pleased to be off the Pred - despite I have a few low cortisol problems, I am prepared to put up with those until I can get levels back up normally.....
Pred will help with any inflammation tbh - especially osteoarthritis which can be excruciating pain...... I wish you luck with your discovery....and if necessary increase your dose to make you comfortable until you can get to the bottom of it all.....x But tread carefully, my rheumatologist discharged me from his clinic because I questioned his diagnosis...oops.....ha ha silly man x
EileenH exie61964
Posted
I'm not in pain - the only time I have pain is if the dose is too low. And it certainly isn't because I was diagnosed quickly - it took 5 years! I was before pred though. I think you are misreading some posts - very few people actually have a lot of pain providing they are on the right dose of pred. Unless they also develop myofascial pain syndrome of have piriformis syndrome.
If what you have really is PMR and not GCA then it was ridiculous to start you on 60mg but to have reduced to 7.5mg in just over a year with a flare is pretty good. If you are OK at 7.5mg then that is a good dose and a few months there will not do any harm. One top group keep patients at 10mg for a year after a 3 or 4 month reduction above that - and find that reduces the rate of flares a lot.
I suggest you try a slow reduction to 7mg and stay there for at least a month - and if there is any sign of PMR flaring or the markers start to rise, immediately return to the dose that worked. But the ower you get, the more you have to slow down and be aware of your body and symptoms.
bob03667 exie61964
Posted
I am in absolutely no pain and have been this way for almost 2 months after being on Prednisone - starting at 20 mg and now at 9. I now am back to playing golf 2-3 times a week with almost no residue of pain or stiffness.
Before I got back on Prednisone, I was having to lift a coffee cup with both hands.
The fact you have no pain shouldn't give you assurance it was misdiagnosed. You should probably get tested for your inflammation level, but still take it slow in reducing the pred.
wendy64238 exie61964
Posted
I am not always in pain. I am down to 2mg and I am not in pain but if I forget one dose of Prednisone the pain comes back by that evening.