My doc suspects PMR
Posted , 13 users are following.
I've been dealing with extreme pain and inflammation for about a year now. My rheumatologist finally told me today he is leaning towards PMR. My ESR has consistently been in the 70-80 range with an elevated CRP. The doc has thrown several prescription NSAIDs at me with minimal results. He's refused to accept this diagnosis because of my age(36) and has finally relented and put me in 10 mg of prednisone twice a day.
I could cry tears of joy right now. I can't remember the last time I went to bed without dreading the climb upstairs or tossing for 2 hours before I could find a position that didn't put pressure on muscles that were throbbing. I still have areas of slight tenderness but I am feeling nothing but absolute relief tonight.
Does this confirm my docs suspicions?
0 likes, 40 replies
EileenH briej
Posted
It doesn't confirm it - other things respond to pred too. But the speed and dramatic difference sounds absolutely typical of PMR for many of us. 15mg wrought a minor miracle in under 6 hours for me!
However - more power to your rheumy for being confident enough to say PMR at your age. Most will refuse to even consider it in under 50s and there are some who tell people in their 60s they are "young" - solely because the medical literature keeps telling them the average age at diagnosis is 72. Which really means nothing because that doesn't say when the patient first developed symptoms! Like Ricky I am sure that there are many under-50s out there who are suffering needlessly because they aren't dx'd because of their age.
There is a documented case of GCA in a 37 year old in South Wales - the pathologist found the evidence at post mortem. I quote it to doctors a lot - because they can't argue with the diagnosis. It may be unusual - but it happens and the patients are ignored or labelled as "depressive", "menopusal", "somaticism" and above all "fibromyalgia". One week trial of 20mg pred would save a lot of those people a lot of grief - because the others do not respond to pred.
By the way, the recommended dosing in PMR is once daily. Obviously your rheumy doesn't belong to that school of thought - but is worth bearing in mind.
Good luck - and if your rheumy sticks with his diagnosis do ask them to at least write a letter to a medical journal if not an anecdotal report of your case. Because we NEED the ones who know to tell the ones that don't!!
briej EileenH
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Thank you for mentioning that. He is trialing me on it for a month. I will see what he says when I go back. I want to be as low as possible. I was easily able to manage this mornings stiffness with a small amount of Tylenol and that hasn't happened before.
EileenH briej
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We ALL want to be on as low as dose as possible - and that is the next stage. Once the symptoms are stable and as good as they get you will reduce SLOWLY to find the lowest dose that gives you the same result as this starting dose. But don't let him bully you into reducing too fast. No reduction in the taper should be more than 10% of the current dose for comfort and for safety in not missing the dose you are looking for. It may sound slow - but it isn't slow if it works. Trying to rush it inevitably results in a flare and returning to a much higher dose to control it and starting over again.
briej EileenH
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EileenH briej
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Keep a diary of your response to pred for your rheumy. The speedy response to a moderate dose of pred is felt by many rheumies to be characteristic of PMR although it isn't a 100% accurate test. Unfortunately there isn't one. If only there were!
It didn't help me with the clown I saw but it DID convince a different GP to provide the necessary prescription.
Michdonn EileenH
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linda17563 EileenH
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Didn`t help with the clown I saw on Tuesday either, passed the paper over to him to show how I had reacted to "his regime" he passed it back to me without even looking.at it....how arrogant is that!....oh dear, I`m starting to sound bitter!
Michdonn linda17563
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jean12178 briej
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Does sound like PMR.....I had pain when my knees touched...I had to sleep with pillow between knees....and the hips ...but especially the upper shoulder pain across the upper back..I even tried a massage wand and made my back black and blue, trying to disperse the "knots"...it was NOT knots , but PMR.....prednisone at 20 mg. per day reduced the inflammation....keep pushing for relief...good luck
jean12178
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I was wondering if hormonal changes bring PMR on....women going through menapause as men also find a decrease in testosterone..hormones protect our bodies during our "middle years"....as we lose those protective hormones, that opens the door for many medical issues....is anyone with PMR on hormone replacement thearp???? Just curious.......
EileenH jean12178
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There is a form of polymyalgia that is caused by hormones being to pot. Any woman whose "PMR" doesn't respond to pred should be investigated further. PMR isn't the disease - it is the name given to the symptoms of an underlying disorder but many doctors forget that.
I had something in my late 20s that was probably ME/CFS but it only lasted about 6 months and I improved though some of the fatigue remained. In my 30s I had sweats and fatigue - and, thinking it was pre-menopause,my German gynaecologist put me on HRT which improved things immensely. I continued but on a different form when I returned to the UK but eventually there was one scare about HRT too many and I decided to stop taking it. It was only a couple of years later that PMR appeared. Looking back I think they were all linked - some form of autoimmune disorder but manifesting in different ways. The last PMR flare I had was different to the others.
There is no easy answer - and I wish I hadn't stopped the HRT! But I have another friend who is still on HRT and who has had GCA. Who knows.
Michdonn jean12178
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Anhaga jean12178
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My PMR started about 15 years post menopause.
Michdonn briej
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Hi nriej, guess I was 79, PMR started one morning after a bout of intestinal virus. It took a couple of months before my PC doctor figured it out, she put me 20 mg of Phed and it felt like a miracle. Working through my first flare up. It is a rocky road, but you can make it. I have learned a enormous amount of information on this site. One thing is that PMR is different for each individual, the Phedinsone's side effects are bad, but we can get through it. Hang in there!
briej
Posted
Thanks guys. My doc has been pulling his hair out with me. He's been drawing blood at every appt and been seeing me every 2-4 weeks. He's ordered CT scans. My sed rate has never been below 59 in all of the draws and he still swayed more to fibro for the longest time.
He sent out a letter yesterday to my PCP stating he suspects PMR. This is the first morning in so long that I haven't had to dose myself up with Tylenol and ibuprofen before I could get to the shower.
Before yesterday's appt, I told my husband I was going to beg for steroids, weight gain and side effects be damned. My youngest is 7 and I've missed so many things and just been an ass to all my family. I didn't need to beg he said he was going to trial me on it for a month and see how it went.
While the pain is not entirely gone(I wasn't expecting so much to disappear so quickly) I can manage with the amount I am feeling now. It's gotten harder and harder to trust myself at work(I work in PT at a nursing home) and I feared I was going to have to take time off.
Michdonn briej
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jean12178 briej
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briej jean12178
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Thanks! I hadn't thought of that and will definitely begin!
EileenH briej
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When you say "doc" do you mean a specialist rheumatologist? If so - I can't believe he doesn't know that the difference between PMR and fibro is that in fibro the blood markers for inflammation are NEVER raised. That is one of the two fundamental differences - the other is that fibro doesn't respond at all to pred.
Since I'm assuming you are in the USA - he's made a fair profit out of seeing you!
briej EileenH
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Sorry. Yes, doc in this case is a rheumatologist. My PC doc referred me after lab work came back high twice for ESR and CRP. Both times my WBC was also elevated and she ran them again as she suspected a viral infection. When the second came back abnormal she referred me to a rheumy.
That's the thing though. He repeatedly kept saying that fibro has no inflammation. He would contradict himself at every appt. With everything prescription NSAID thrown at me, I would get very minimal relief. I would still have to take 1000 mg of Tylenol every 3-4 hours with naproxen or Ibuprofen scattered in there as well just to take care of my kids and make it to work.
I'm not kidding when I say I've been made to feel like a drug seeker. I work in the medical field and anytime I have mentioned the huge decline in the quality of life I felt as if I was patted on the head and ignored.
He has mentioned several times to me that he doesn't like to prescribe opiates. That's great doc. I'm just looking for answers. Not a high.
I am in a very rural area and the closest in network rheumatologist is an hour away. Every visit is a specialist copay. I have wracked up a sizeable bill with CAT scans and lab work. Sometimes I wanted to tell him it would be much cheaper for me to buy opiates on the black market than continue to keep my appts and search for answers. But, I dread confrontation and would just sit through his lectures.
briej
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Michdonn jean12178
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EileenH briej
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Would your PC doctor take you over? We can provide her with good medical literature to give her a hand.
But this guy is a waste of space if he knows fibro isn't inflammatory but still can't see the wood for the trees. Because I'm me I probably would point out opiates are cheaper on the street than going via him - but opiates don't work in PMR either. Tylenol in quantity is also a risky approach - and it doesn't do more than maybe take the edge off as you know.
I still struggle to understand how people can tell me state-funded medicine is a bad thing. We struggle to get answers at times it is true - but it doesn't cost us a fortune while a doctor messes about as it does for you.
briej EileenH
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Now that I have a sort of answer and some relief I am definitely going to be switching things up. The wait time at many places is a long time and the thought of starting all over filled me with dread.