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
ricky23486 briej
Posted
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.
briej ricky23486
Posted
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.
EileenH briej
Posted
Some of the fibro trigger points coincide with the myofascial pain syndrome trigger points - and MPS is commonly found alongside PMR and sometimes it is difficult to know if it is MPS or PMR that is causing the problem. For me, if the MPS is bad - so is the PMR. But if I get the MPS sorted out - the PMR improves too and I need a lower dose of pred.
Your MIL was spot-on - anyone who sees raised labs and thinks fibro isn't just "old school" he need a refresher course!
Your last paragrah sounds just like I was - my shoulders didn't HURT - but I like to sleep with my arms above my head and I just couldn't do it. It wasn't pain - it was just stiff. I also had tendonitis from the outside of my elbow diagnonly across to the inside of my wrist. It did eventually go away on pred but it took a few months.
Guest briej
Posted
I never had shoulder pain. I described my symptoms very detailed and told the MD they should look for a connective tissue disease, but had never heard of PMR before. Pred was my miracle cure.
jean12178 Guest
Posted
EileenH jean12178
Posted
Unlikely I think Jean - I'd ask for a physiotherapy session and get them to investigate the state of your neck and shoulder muscles.
Guest jean12178
Posted
I am down on 1.5 mg Pred with the DSNS method what works so far pretty good, but will stay there for probably another week. Had a flare up in January. My rheum wants to go down faster.
I take Ca, Mg, Vit K (someone on this forum recommended it), healthy nutrition and exercising to do something for my beginning osteopenia/osteoporosis. I had a scan 3 weeks ago.
dboza briej
Posted
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..
dboza
Posted
stanley36717 briej
Posted
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.
Rimmy stanley36717
Posted
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
EileenH Rimmy
Posted
I certainly wasn't either!
Anhaga Rimmy
Posted
There is in fact growing evidence that c-section babies may have incomplete immune systems owing to the fact that they did not receive their mother's dose of microflora at birth. This can be overcome, and ways of doing this are being developed, but both this factor and the much more comon one of repeated antibiotic treatment may be a key factor in many modern diseases - not the only factor but much more important than we were aware of until just a few years ago.
ricky23486 Rimmy
Posted
pauline36422 briej
Posted
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