Hateful polymyliga
Posted , 7 users are following.
I was diagnosed with pmr 18mths ago my dr assumed it had been underling for a while, treatment started immediatly. 20 perdnisolone fro a while then reduced as told, it did kelp quite a bit but symptoms would come and go dosage up and down .At the new year just pasted I was down to 2 mmg per day but having awful pain all down my feft arm from shoulder to wrist, saw a dr I only see once a year for another reason she told me to come of the prednisolone I obviously didn't have pmr seeing as only one side was being problematic, it was just a frozen shoulder . Fast forward 4 months it's now a trapped nerve, I have to wait until 23rd may to see my own gp. I don't know exactly what is happening I'm hopeful I wond have to return to prednisolone for obvious reasons, the weight gain is sole destroying A normal day will see me struggle to get up and going ending an or so later I'm back to bed hot water bottle and pain meds. My legs are so sore even when I don't do more than i need to, just fee so useless
0 likes, 7 replies
pam7653 Bella_61
Posted
I only have issues with my left side. Typically my hip. My quads are next on the list but both of them, as were my feet at one time. Are you seeing a rheumatologist? Why would they take you off of Prednizone? Get blood work done by a rheumatologist.
My PMR has gone on for over 4 years. I fluctuate between 20mg with a flare then reduce to 5mg. That seems to be the lowest I can get down to at this time. In the beginning I could get down below 5 mg but not anymore.
See a different doctor. So many GP's don't know enough about PMR. Mine told me I had RA. She was wrong. I demanded a Rhumy!
jean12178 Bella_61
Posted
EileenH jean12178
Posted
I'm sorry but I have to disagree - that is not necessarily true as many patients on the forum will tell you. A good GP is often more use than a poor rheumatologist and in the UK it is more likely to be managed by a GP even if an initial diagnosis is made (or not made) by a rheumatologist. Even rheumatologists often insist on reductions in the dose of pred which will never work well.
mary_49929 Bella_61
Posted
Definitely get a second opinion... I have far more pain on my right side . You need to be back on steroids for PRM....I know its hard, and I 've hated feeling like this at times, but its a must.... good luck..
Michdonn Bella_61
Posted
EileenH Bella_61
Posted
PMR usually lasts in excess of 2 years - and experts have said in the past that patients who manage to get off pred in less than that often have relapses at a later point.
Not everyone gains weight on pred but you do generally have to work hard to avoid it. Many people on the 3 PMRGCA forums in the UK have not gained weight with pred or have been able to lose weight while still on pred. I lost 36lbs while still taking between 10 and 15mg per day - by cutting carbs drastically. The weight loss was slow but many who have done it from the start have avoided weight gain or just put on a couple of pounds.
Unmanaged PMR can also lead to weight gain - I gained at least half of the weight while I had PMR but wasn't on pred, due to immobility and comfort eating because of the constant pain and depression. When I at last was started on pred the cravings went so I didn't eat as much - I gained no more weight but it redistributed to the usual places. When I lost weight that all went - I got my waist back, my face slimmed down. I could do with losing a bit more but that has been the story of my life.
At a guess, from what you say the reason the symptoms came and went was because you reduced too quickly and a common problem is that patients feel well one day and do more than their muscles can take and so suffer the next. Managing PMR is not just a case of taking the pills - they just combat the inflammation that causes most of the stiffness and pain but you also have to learn to manage the rest of the illness which means pacing and resting appropriately. You can do exercise, it is good for you, but you have to know your limits and stick to them.
PMR often cycles, going away or almost going away and then returning. A diagnosis of frozen shoulder is not uncommon in the early stages of an episode of PMR which is generally bilateral but which often starts on one side more than the other. And there are things that are more common when you have PMR, not least something called myofascial pain syndrome and that can be more one-sided than the PMR itself. It also responds to higher doses of pred but can be treated in other ways including massage and manual mobilisation of the trigger points - and if you can do that the PMR can be managed with a lower dose of pred.
Michdonn EileenH
Posted