Took almost 4 months to get a rhematologist appointment. Went to my GP and told him I was having trouble sleeping, my shoulder hurt and having trouble moving in the morning. Since I had a frozen shoulder about 10 years ago that required surgery on my left shoulder and have had therapy on my right shoulder a few year later I went back to my shoulder doctor. I was given a shot of cortisone. By the next day I was feeling good all over and sleeping. Started physical therapy on shoulder but after about 4 weeks was getting worse. Switched GPs as I was getting nowhere and I had gotten to the point that I was in pain trying to tie my shoes. The GP gave me a 5 day pack of presnisone (type used for allergic reactions) and instantly I was better again. But GP did not want to give me prednisone and started running tests. I researched topics and came to the conclusion my problems were PMR. Problem was that my CPK was only 8 mg/L. GP is thinking it is not PMR. I kept getting worse and was having trouble getting out of bed in the morning, I would struggle to get the covers off. I would not get down on the ground if I was not near something I could push off of. I could not get off the couch without moving to the edge first and pushing with my hands. The GP finally gave me a prescription for 1 mg prednisone/per day. That did help but within 2 weeks and lots of begging I got 3 mg presnisone per day. That helped more but still did not solve my problem. I finally got rheumatologist opening a few weeks early when someone canceled. I got script for 20 mg/ day. After a day I felt like dancing in the street. Just moving my hand was easier. I could get off the couch with ease.
I have been out cross country skiing and have been on the treadmill for 2 miles a day on a 12% incline (I had been in good shape and did numerous hikes of 5 miles or more during the summer). Down to 12.5 mg after 6 weeks but will stay at this level for another 6 weeks as I could feel pain coming back on and last longer, not bad but took 2weeks to adjust to this dose.
My SED rate is always okay. My CRP is now 1.0! But have others had a low CRP value as well. As another point I have hemochromatosis which means I can generate too much iron and have to give blood to keep the ferritin level down. I wonder if that comes into play
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RNRN
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Others more expert will reply b ut tp be going on with: symptoms rule - low CRP etc. is not uncommon . Maxim speed of reduction 10% of what you are on for as long as it takes. Too fast and you risk relapses which mean that the sum total of pred. taken exceeds what it woul d have been had you gone slower which was the case with me initially on pred 15 mg for some time .and trying three times but never got below 8 mg with the GP before seeing rheumy .
Glad you finally got onto pred I also took so long to get doctors approval for pmr treatment due to blood not being raised enough...strangely I was also very fit cycling 70 miles a week maybe there's a connection. I'm down to 6mg after starting on 20mg in may 16 and just starting to do longer walks so I've not pushed the exercise after joining this great site. I'm sure you'll receive better answers here than any doctor . Good luck. And Happy new year.
My CRP has never been above 2 and while on Pred went down to -1. Also my ESR on diagnosis was 16 and is usually now around the 11 mark. So you cannot always rely on these readings. In fact, apparently 20% of folk do not have high readings so symptoms are the key. In fact saw a new GP today and had quite a discussion/ disagreement about this whole matter. He then took my blood pressure and said it was up and said it was the steroids. I said no it was our discussion that made my blood pressure go high( never had high blood pressure before!)
"it was our discussion that made my blood pressure go high( never had high blood pressure before!)" Good for you Jackoh. How often do we leave a consultation fuming. Of course there are open minded medics but they have the power in this transaction.
Be careful about overdoing the exercise, PMR muscles are intolerant of repetitive moves and if you do too much they will bite back. Also be aware that sudden large drops in the steroid dose can also have an adverse affect - that is why we suggest longer, slower drops as it gives more time for your body to adjust.
In company with about 20% of patients with PMR I have never had any raised inflammation markers - we have to be diagnosed on symptoms alone.
Additionally, I have been around this stuff for a long time. Never in that time have I met anyone who could be described as a couch potato being diagnosed with PMR. We all seem to be multi-tasking, very busy, all watching, supervising people. Time to slow down, maybe?
Your high ferritin level could also be due to the PMR - it is also what is called an acute phase reactant. My ESR and CRP are both normal, my ferritin level is raised.
Careful with the exercise - your muscles are intolerant of acute exercise and take longer to recover. You may be OK if you have managed to maintain the same level - but as the dose falls you may experience more problems.
Thanks I was diagnosed with hemachromatosis about 10 years ago. Used to have to give blood monthly and it has reduced to 3 times a year so the ferritin stays low. I am not sure what an acute phase reactant is. I do know that in GCA patients they find Immunoglobulin G acting against the ferritin.
An acute phase reactant is something that reacts to the presence of inflammation and can be measured. The changes are trigged by the release of acute phase proteins in response to inflammatory stimulus. The most important ones of these acute phase reactants are erythrocyte sedimentation rate (ESR), C-reactive protein (CRP), fibrinogen and ferritin.
So I am genetically predisposed to have high iron levels. So high ferritin can also be an indicator of PMR. Except in my case it is being kept low and you would not be able to use it. Even so my ferritin level is not all of sudden requiring more treatments.
On the item of overdoing exercise. I am really just trying to maintain my muscle tone and to do the activities I normally would. I hike or bike in the summer. I find the reading while on the treadmill a good way to deal with work stress. I also glass blow which gives you plenty of exercise from having a few pounds of glass on the end of a 5 foot pipe with which you must move very smoothly.
Just had my ferritin test it is low at only 26. Hasn't recovered from blood draw 3 months ago. HGB is 16.1 so no issue there. PMR is either not causing iron to go up or the pred is stopping it.
RNRN - your symptoms mirror my own exactly, altho' mine came on very quickly. Couldn't put up with it after two weeks, cancelled a trip to the USA and went privately to a rheumatologist - best move I made, as he made immediate diagnosis!
Others will tell you that not all patients have raised blood markers. Initial 15mg Prednisolone not quite enough so went up to 20mg & huge improvement - have got down to 7.5mg since April '15.
Don't overdo the exercise nor drop dosage too quickly - you'll risk a 'flare'!
Thanks. I was getting desperate. I called around to find other rhuematologists but there were none with openings. I ended up going to a neurologist that was a friend of the GP that ordered tests to eliminate other issues and get the data for the Rhematologist so I would not have to wait for test results. I was considering just going to the ER. I was getting to the point where I was afraid I would fall and had resorted to a cane at times. Glad to hear you are improving. This seems very frustrating as it is hard to describe. Being able to tell what is PMR related versus shoulder versus just normal activity was what gave me grief at the start. I was always thinking that maybe I had just overdone something. (Like maybe digging up 75 feet of ground to take my cannas out in the fall to plant tulips. Or maybe that 10 mile hike was just too much of a jump from my normal couple mile hike: LOL ) I will take everyone's advice and not do the sudden jumps in amount of exercise.
Now - getting off wrongly at the start...... that reminds me! I started getting a really painful shoulder, reported this to the GP and was told I'd be put on the list for physio treatment and was given a list of local clinics to get x-rayed. Drove around on a 'hospital crawl'(!), found one but this was inconclusive. I'd been moving furniture/boxes around in my storage unit so initially thought that might be a factor. Within a couple more days both shoulders & also hips were excruciatingly painful, couldn't move the duvet off me in bed and couldn't get out of bed in the morning, after sleepless nights. A week of this made me (or more precisely, my wife) realise that the GP wasn't going to identify a truly scary illness any time soon - I staggered around contemplating life as disabled and then went privately to a Rheumatologist. I dread to think how long this would've taken otherwise!
hello, I was wondering how you are currently? My husband has had hemochromatosis and usually needs phlebotomy every six weeks. How did you reduce your need for it? He was also diagnosed with PMR. He is in his last 50s and has a very physically demanding job.
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