Connecting the dots

flipover, forgive me if im wrong, as a newbie, BUT those symptoms sound like PMR to me.

Before the bone cancer scare i had thats just how i felt.?

for years i used walk one and half miles to work inall weathers, even up to my knees some winters, and nobody could tell me why, only that im was in the change, yes that old story.

Then somebody must have seen the light after my daughter in law suggested they test me for PMR end of story. Have a good day

 

I suppose it is possible that the Prolia was the final straw for your autoimmune system and PMR was the result - but I'm not sure there is any way of saying it makes it worse without having another shot! Catch 22!

Mind you, there are probably hundreds of drugs for which these are side-effects. Seven days of a statin had me in a far worse state than I'd been in a major PMR flare a couple of months before! 

Flipdover, anything is possible, it could be a coincidence or it could be the month off work.  The Denosumab could have been the final trigger to a sequence of events resulting in PMR.  But even if Denosumab isn't actually causing your pain, it could just be aggravating it.  I have a friend who has tried various bone protection meds, including Donosumab, and all have caused pain in various parts of her body.  She is now about to be prescribed daily Forteo injections for two years - they cost an arm and a leg and the consultant has to seek special permission to prescribe.  However, I am hopeful that this finally works for her as she has osteoporosis - it certainly worked for my elderly aunt a few years ago.

Dear Flipdover,

Prolia is the last osteoporosis drug I took (after Actonelle and Forteo) before I contracted an osteonecrotic (dead bone) spot in my jaw. This occured in sprint 2014 and I did not show symptoms of PMR until November 2015. I am not on any osteoporosis drugs at this time. I just take calcium and try to walk every day for 40-60 minutes.

The best way to know if you have PMR is to try the prednisone low dose treatment for two weeks (under a good rheumatologist's precise directions) to see if you pains and fatigue go away.

The drugs for osteoporosis can have rare side effects (like osteonecrosis) and your ordinary doctors will not recognize these problems easily. Your best bet is to see a rheumatologist in a teaching / research hospital or center where they and their colleagues see many patients with PMR and rare side effects from osteopororic drugs. 

I am also worried that Prolia which interferes with the complete cycle of bone growth and replacement might be building inferior bone mass that might cause additional problems.

As patients, we often do not get the complete picture on these powerful (and risky) drugs.

Sorry for the confusion people. There's no doubt I haver PMR, that's not what this post was about. I was speculating that the Prolia had either contributed and/or presented with similar symptoms which led me to believe the PMR was in fact worse than it was. Eg, the pain was from the Prolia as well as PMR. i was also speculating that I feel better as the effects of the Prolia wear off - it's been 7 months since the last injection and coincidently, I'm feeling significantly better.

I will be advising my GP that I won't be continuing with the Prolia - and as it is only being administered as a precaution I don't feel the need to replace it with something else. I'm not comfortable with the side effects.

I had an immediate and painful reaction to statins the one time I went on them - not only did my brain turn into mush, but the pain in my legs was incredible. Not doing that again either!