i am new to this site as of about an hour ago--already I have learned a lot.
i live in Minnesota in the US and am 64 years old. I was diagnosed with PMR in late November last year and started on prednisone by my Internist and referred to a rheumatologist. The initial high dose (40mg) tapered quickly to 20 and I am now on 6mg for a month and will reduce one mg/ month through the summer.
My inflammation markers (sed rate and C Reactive Protein) are almost back in the normal range but since I reduced the pred below 10 mg, I have had a persistent ache in my right buttock. My pain started originally in my hips and thighs. The Rheumatologist doesn't think the pain is related to the PMR because it is only on one side. Does anyone else have experience or opinion on this?
thanks for letting this Yankee join your informative group.
Hi djwillms,
They even let Aussie's join!
I was diagnosed in November too, and still trying to get my dose right - havn't gone down further than 12.5mg so you are doing well.
I don't always have bi-lateral pain, in fact hardly ever. It might hurt both sides, but in different spots. It started in my hips and thighs too - weird random painful spots on my upper thigh muscles and even in my calves. It felt like I had a huge tension knot in my muscle, but there's nothing to show for it except the pain.
Flip
Hi dj,
You seem to have managed to drop quite quickly from an original 40mg down to below 10mg in 6 months, I have had PMR for 11 months now and have dropped from 25mg to 14mg and still get quite a few aches and pains. There will be others to help you further on this site so welcome to our forum and good luck.
Welcome djwillms you will learn a lot on this forum we have some excellent people with lots of knowledge, i am a newbie my self and am still learing.
Sorry i cant help you, but some one will be along who can, take care
Hi dj, pre diagnosis, the pain started in the right side of my neck. Up until diagnosis my pain was bilateral but always worse on my right side. I am right handed and probably throughout my life my right hand side to my body has probably received a harder hitting than the left. That is my right leg is my leading leg, I use my right shoulder, elbow, wrist and hand more than my left.
But taking about your medication for a second. I believe you are reducing far too quickly and by far too big a reduction. If you continue to reduce it would mean that you are off medication in less than 8 months! A world record I think! I would have said that this pain could simply be put down to the pains of life, but because of your rapid reduction I think it could be because you simply are not taking enough anti inflammatory drug, prednisolone, to cover the amount of inflamation still in your body. You say that your blood tests are almost back to normal, well if you were on the correct level of medication they actually would be back to normal because the drugs would be suppressing any inflaamation and therefore a normal blood test would result.
i'm tempted to suggest you up your preds, that way if the pain goes it will tell you that the lower dose of preds were not quite enough.
dj, I have no medical qualifications but others on this forum do. Listen to their advise. All the best, christina
dy my pains have allways been bilateral. started 2.5 years on pred, and had pain right through to 1 mg. which had to rise to two mg recently, although the pain was very slight, which i think most people have. but i have noticed in the last two weeks the pain has almost gone the buttock pain was first to appear and the last to disapear so hang on in there dj
It could be piriformis syndrome - judging by the position! Also known as "fat wallet syndrome" in men! Is quite common amongst PMR people.
PMR pain tends to be bi-lateral but of course there are always exceptions.
I would hope your ESR/CRP are back in normal range - that is the ideal to aim for. You get to the lowest reading you can with pred and then look for the lowest dose that maintains that.
There are an awful lot of people from your side of the pond though I doubt many are Yankees! But Minnesota is the capital state of PMR - much of the research was based on populations in Olmsted County. It's all those Scandinavian genes!
I read "fat wallet" and thought you had seen me in profile.
I will check out piriformis syndrome.
My CRP is still slightly high but the ESR is now high normal--down from >100.
I didn't realize that Minnesota was a center of research--very interesting. This is a great forum and I am glad to have found it.
Thank you for your response.
I thought when I was diagnosed that a couple of months was a long time to be on prednisone. How one's perspective changes.
Very similar, but mine is worse when I sit and it is lower--deep in my glutteal muscle on the right side. This is a very interesting discussion, though.
This is very similar to how mine started. Mine was definitely bilateral at first--I described it as wearing "pain pants" but now I just get random pain.
We will go through this together.
Ooops - should have explained! It is claimed that men sitting on their wallets filled with money in their back pockets can cause it! Ladies have handbags - so does my husband but he still keeps his wallet in his pocket...
My youngest daughter has piriformis syndrome and I asked her for some exercises. I did two of them and the pain was gone--at least for the day! I gave her the offspring of the hour award. Thanks for your suggestion.