How is PMR diagnosed?: At the end of January after... - PMRGCAuk

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How is PMR diagnosed?

JubileePenny profile image
13 Replies

At the end of January after starting on a weekly alendronate, I began having stiffness in legs and shoulder / arm pain. I couldn't get up from an arm chair and sleeping was disrupted by pain and trips to the bathroom because I was taking various pain meds.

My doctor thought it was arthritis but did a CRP test (inflammation at 11) and ordered xrays on both shoulder/arms and also ultra sound. I had to wait for appointments for those tests and then my GP's appointment was cancelled, so I still haven't seen the doctor.

I have nausea which seems to be from pain and a general feeling of being unwell. My legs are very stiff. Still eating fairly well. Some headaches but I am wondering if they are caused by ibuprofen.

My appointment isn't until July 2.

I am rather anxious about taking prednisone. Any advice to get me through the next two weeks.

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JubileePenny profile image
JubileePenny
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13 Replies
SnazzyD profile image
SnazzyD

Hello, if you were fine before starting Alendronate and your pain started soon after, I would consider it might be an inflammatory side effect of the drug. Muscle, joint or bone pain can occur and is documented. These lay it out simply

Look under warnings heading - healthline.com/health/drugs...

drugs.com/tips/alendronate-...

JubileePenny profile image
JubileePenny in reply to SnazzyD

Thank you for your reply. I went off alendronate for several weeks and talked to my doctor.

She said, "And did the pain go away when you stopped?" The answer was'no'. I think it may have triggered the immune response, but she feels I should continue with it for my osteopenia.

SnazzyD profile image
SnazzyD in reply to JubileePenny

Sounds plausible. I read something somewhere that it can cause a cytokine response. How long did the doctor wait for the symptoms to subside before deciding stopping wasn’t needed? I can’t imagine it would switch off like a light.

JubileePenny profile image
JubileePenny in reply to SnazzyD

Thanks for your input.

piglette profile image
piglette

Does the Ibuprofen help? Normally with PMR it is not much good, steroids are needed.

JubileePenny profile image
JubileePenny in reply to piglette

Thanks for responding. Yes, the ibuprofen helps more than tylenol.

piglette profile image
piglette in reply to JubileePenny

The fact that ibuprofen works could point to the fact it is not PMR but something else, even fibromyalgia.

JubileePenny profile image
JubileePenny in reply to piglette

Thank you.

PMRpro profile image
PMRproAmbassador

Snazzy has already pointed out the obvious question that must be asked since it started soon after taking the alendronate - is it the "severe bone, muscle and joint pain" listed that should be reported to the medical team. Was there ANY change when you stopped it? Has it been shown you need it - have you had a dexascan with poor t-scores? Osteopenia is NOT necessarily a reason for alendronate, it is a matter of degree.

Since you are complaining of nausea and headache, I would be keen to be seen by the GP far sooner since altogether it is possibly pointing to a progression to GCA.

JubileePenny profile image
JubileePenny in reply to PMRpro

Thanks for your reply. I have a number of autoimmune problems - hypothyroid, primary biliary cholangitis, so I believe I am at risk for osteoporosis. My neck, arm and leg pain is a result of movement - but moving around is better than keeping still. I do better in the day that at night. I did have a bone scan before she recommended the alendronate and I had taken it about ten years ago, so I was familiar with it. Thanks for your advice. To see a doctor sooner, I will have to go to 'hospital emerg' or a walk-in clinic, neither of which will give me prednisone without various tests. I need a diagnosis before they will prescribe it, and I want to be sure I need it. From the posts I read here, it is a long-term situation. Thanks again for your support.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to JubileePenny

Not sure anyone is going to happily prescribe Pred without a variety of tests… but along with the symptoms you describe it is also used as a diagnostic tool [i.e. your response to it]. If there is any possibility the headaches are related to GCA then you need to seek more medical input ASAP.

JubileePenny profile image
JubileePenny in reply to DorsetLady

Thank you for your reply. I really have no idea of what is going on as I haven't spoken to my doctor since May 17 when she ordered CRP and xrays and ultrasound on both arms. I have the CRP results which come via a website. My June 11 appointment was cancelled. The headaches are not severe, and I did have headaches a few years ago which stopped when I stopped taking Aleve (naproxin). Thank you for your response.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to JubileePenny

Okay... not very helpful when appointments are cancelled.. unfortunately it seems to happen more regularly wherever in the world you are ...

Hope you soon get the info, and treatment you need.

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