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?
Your description of how will be very familiar to many of us on this forum.
I am appalled that your rheumatologist let you suffer such pain for a whole year. I wonder how experienced he is....?. Granted you are younger than most recorded PMR patients...and he probably wanted to avoid dosing you with steroids. But the presentation is right which suggests that maybe there are a lot more young people out there suffering like you just because they don't belong to the right age group. Glad you are at last going to have a good night's sleep.
I was diagnosed with PMR by my internist, pretty much right away. I was given 20mgs. Prednisone and it was like a miracle drug. It took almost a year to finally wean off it completely. My doctor thinks this is my second flare up. My first one was when I was 37. The first time, I was sent to a rheumatologist and I was tested and he couldn't figure out what it was. He thought it was a virus. I wasn't given prednisone, just strong NSAIDs. I finally knocked it out of my system with a case of the chicken pox! This flare up was diagnosed as PMR. I am doing pretty good right now..
I forgot to mention my 1st flare up was 20 years ago.
After a failed surgical procedure for a blocked artery I experienced severe leg pain the very next day. I couldn't roll over in bed. For 4-5 months I underwent many tests to find the reason. I finally Googled "high sed rate". Polymyalsia Rumatica had all the symptoms; night sweats, low iron, joint pain, etc. The next day I received Prednisone and my pain was gone. Then I had a temple artery tested for GCA and received a false negative result and lost some vision in my left eye. That was 4 -5 years ago and I'm on 4mg of Pred a day. I have gained 20 lbs and have moon face. I'd like to get off this stuff but don't want to go blind. I believe that being a "C-Section" Preme baby has something to do with Auto-Immune problems.
Hi Stanley
Where's your 'evidence' for links between being a prem baby and c-section causing auto-immune conditions like PMR ? I wasn't either of those and I wonder if (m)any others even on this forum were !!??
Best
Rimmy
hi briej i was 18 month before final diagnosis. and that was at my suggestion
why oh why does it take so long before the docs or rhumies come to there desicion. it was my neice who is a gp said she thought it was pmr. then i told my doc. he then said we will try u on steroids see what happens. and it worked lol xx
I certainly wasn't either!
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!!
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
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!
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.
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.......
Good luck briej, hang in there. I believe that there is an end we just have to get there, proper diet and exercise I believe should help. I am reading everything I can to learn how. Keep smiling your here!
When I was first put on prednisone I had an enoumous amount of energy....no negative side affects...I lost 10 pounds....and my house was the cleanest it has ever been.... continue working...better than ever....after about 3 months of high dose of prenisone, problems began....slepless nights, sweats, constipation, buffalo hump on back of neck (cushings syndrome).... dropping the dosage to 20mg a day..was very comfortable...still energetic, ..dropping to 15 began regining weight, little less energy, but still can work....watch out for side affects..KEEP a Daily Journal ofyour dosage , and pain.....it really helps your doctor....
I am wondering if it's because of my age?? When I was referred to this rheumy my MIL warned me to switch. She has fibro and he is very old school and not big on a fibro diagnosis. It's been a tough road and I've often felt like people assume I'm drug seeking(mind you, I've never been prescribed narcotic pain meds through this ordeal).
At one point he told me I have all the fibro trigger points but I have labs that show high inflammation. I just randomly began poking at different areas of my body and said, "I may have the trigger points, but it also hurts here and here and here and here!".
I don't present with shoulder pain. As a matter of fact the shoulders are the ONLY area that doesn't hurt. From my triceps down to my wrists constantly ache. And I don't even know that I would say ache because there are days I have no grip strength and can't even turn a doorknob.
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.
Thanks! I hadn't thought of that and will definitely begin!
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!
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.