Tests for PMR?
Posted , 9 users are following.
This has probably been answered before, but what tests did you all take to get the PMR diagnosis? I have regular blood tests, and most are not flagged, except the SED rate which is consistantly above 40. IN the last year the number has been up to the 60 and more when I try to cut down on the prednisone. So when I look at my graph, the numbers are about 40 or 50 if I am taking 30mg pred, and 60 or more if I go down to 20mg of pred.
My doctor now wants to test my heart to see if it is enlarged. She thinks the high SED rate 69 this time is due to a yeast infection. OK, but the infection was gone when I took the test. Also how come the SED is high all year = I haven't had infections all year? She also mentioned my shoulder pain was fibromyalgia. This I can accept, but I think I read that fibro doesn't have high inflammation?
0 likes, 9 replies
EileenH DebbieHurts
Posted
Fibro DOESN'T have high inflammation markers, it is not an inflammatory disorder. If the inflammation is increasing when you reduce the pred to 20mg either the pred isn't having the desired effect for some reason or this is more than "just" PMR. Some people don't absorb oral pred well so they are on a much lower dose than they think or they don't respond to one form of steroid as well as another. There is inflammation that doesn't respond to pred - and if there is infection that is causing that inflammation, that could account for the increase as pred is reduced.
Shoulder pain alone is not likely to be fibro - the diagnosis of fibro requires the pain to fulfil certain criteria - including there being responses at 11 from 18 defined trigger points. Some of these overlap with PMR which doesn't help in differentiating them from one another. I think she really does need to do a barrel of tests - but ptolemy on the forum also has a persistently high sed rate and they haven't found anything there either.
The tests for a PMR diagnosis are not so much FOR PMR but to rule out a lot of other things including some forms of cancer but they are usually obvious from the routine full blood count results. Some more investigation of your shoulder might provide some information - and do you have any neck pain along with that?
But you never have been free of pain with your {MR diagnosis have you?
DebbieHurts EileenH
Posted
When I first started pred, I had a wonderful reaction, loss of all the pain. After a month or so it settled down to OK, which was ok. Then I began to decrease it and got down to 15mg which was fine. Until I got pneumonia. After that it has been bad and that was 2 years ago, with trying to reduce again and not feeling at all well. The dr has given me many tests, trying to find out what is wrong. Next week it is a test for an enlarged heart and some exrays of my shoulders. At least she is trying to find something. It is just that I am in pain like PMR and she doesn't want to address that. She says I don't have the markers and thinks the hi SED is from infections. Maybe she is right?
Anhaga DebbieHurts
Posted
At the least she could allow you a higher dose of pred as a week or two trial - you know, just within the PMR guidelines, nothing too high, and if that has a really positive effect on you that would likely indicate it really is PMR and she should treat you accordingly. You can't get better if you have PMR and your pred dose is consistently too low.
EileenH DebbieHurts
Posted
After the pneumonia, did she put the dose up to a level that managed the pain and start over again? If it was never high enough to deal with a flare due to the infection, you wouldn't get rid of the pain.
DebbieHurts EileenH
Posted
Eileen, I think that is what happened. I stayed on the lower dose and then got so painful, I took it on myself to up the pred, without her advice because I knew she'd say no, I guess. anyway she may have changed her opinion then. Also she says I've suffered too long for it to be PMR. I don't how many years it is, maybe 5. I wait patiently for it to go away. Ha. Anhaga, I'm going to suggest that next time I see her. I wonder what would be the "highest" dose. I think I do pretty well if I use 30mg consistently
EileenH DebbieHurts
Posted
Oh well, obviously I don't have PMR - after 14+ years! 5% of patients may have PMR for the rest of their life and the median duration of pred management of PMR is 5.9 years. So she just COULD be wrong...
Anhaga DebbieHurts
Posted
Hmmm, you do know that you should not have to stay at 30 mg to manage PMR? Do you think it's because you have never had the chance to take that dose for long enough and then taper at a slow enough pace? Because it would be much better for you to be at a lower maintenance dose, and certainly not yo-yoing.
DebbieHurts Anhaga
Posted
Anhaga, that's exactly what I think has happened. And I am not doing a good job of reducing. I'm all over the place, due to pain. But sometimes the pain isn't responsive to the pred, so I guess it must be something else, yet sometimes I do feel better. Yo yo is a good description. I need will and a schedule.
DebbieHurts
Posted
The most intense pain I have is on both sides just above my bottom on each side. I don't know what it is connected to! My pain dr says it is from the arthritis in my lower back and I'm to have an "ablation" in a couple of weeks. Oh, if only it would work. Sometimes I think it is pmr, but like today it hurts so much and yet I took 30mg of pred???