My first post here... I'm a hotbed of autoimmune disorders: arthritis, PMR, Hashimoto's Thyroiditis, & Sjegren's.
I've been dealing with pain most of my life (I'm 79) but was only recently (officially) diagnosed with PMR. In the meantime, over the past 53 years I was told my pain was caused by a variety of reasons with no good solutions.
But at least these days doctors pay WAY more attention to their women patients. In the 1960s & 1970s doctors just assumed it was "all in our head", that we were bored housewives looking for attention. I was offered diet pills, tranquilizers, (neither of which I took), told to get a part time job, do volunteer work, take up a hobby, etc. Over a period of eleven years as I tried to get answers, not one test was done to see if there was actually anything wrong with me.
Anyhow, it's been a long, painful journey to finally have a diagnosis I can believe, and a solution. I'm not thrilled to be on Prednisone long term, along with Fosamax to protect my bones, but it is wonderful to once again be able to dress myself, put on my socks & shoes, tie my own shoes and numerous other things!
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79andCounting
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Welcome and so happy that you finally had an answer. Look around at the site.. there is a lot of great information here. the FAQs helped me a lot as far as tapering, sickness rules, etc. But feel free to post any time. Did you have a bone scan before taking Fosomax? I know some docs just give it to people going on prednisone but it might not be necessary. There is information here too about Bone health on Prednisone that might be worth a look. Good luck and hope your PMR adventure is without too many bumps in the road! Bonnie
Thanks for the welcome. Yes, I had a few bone scans in the past few years that showed I have osteopenia, so the Fosamax is necessary to prevent it from progressing to osteoporosis.
Gosh at 79 osteopenia sounds good not so bad... there are lots of conversations about the fosomax and a great book called Your Bones by Lisa Piazolli (might have that last name spelled wrong) I am pretty deep in osteoporosis and still resisting meds other than the calcium D and K27. But not trying to influence you! Promise. !
Just one thing - when I started pred 15 years ago my dexascan showed osteopenia, My worst t-score was -1.3 and it was acknowledged I didn't need a bisphosphonate, calcium and vit D would be adequate. Fifteen years later my worst t-score is -1.6. That was with just calcium and vit D and had I taken the bisphosphonate back then as was automatically assumed, I;d have been taking it for no need - and they too have adverse effects, in the long term forming poor quality bone, Pred doesn't always mean osteoporosis - if you are nearer normal than osteoporosis t-scores, it may not be required yet.
Have you had dental checks before starting it to be sure there is no urgent work likely to be required in the foreseeable future - because many dentists will not do work on patients taking bisphosphonates.
Like PMRpro I only took Calceos while all eight years on prednisolone ( had to stop Alendronic acid after two doses ) The surgeon who did my hip replacement when I was eighty one remarked on my "amazing bone density" for my age.
Hello, I just got my Alendronic Acid rx and haven't tried it yet (waiting for a day with no commitments). May I ask why you stopped it after 2 doses? I assume side effects, but what were they? Thank you.
Before you take it - have you had a thorough dental check? Just in case anything is hiding because dentists can be very funny about treating patients on a bisphosphonate.
I've had my share of head colds but never once had even the slightest cough ( except whooping cough at nine months! ) After my second AA dose I was wheezing alarmingly, phoned G.P. who said stop taking them. Go back to Calceos. No more wheezing.
I reduced the Pred. to zero eleven years ago. Plenty of stiffness and aching bones and muscles. Who can say whether PMR is to blame? ESR very slightly raised when last tested some few months ago . Result said to " proceed with caution".
A fortune awaits whoever comes up with a sure fire PMR test.
After seven months reducing Pred from 15mg to 7.5mg, I developed Macular Degeneration. So my rheumatologist switched me to 200mg Hydroxychloroquine overlapping a months period. It was successful, and I eventually got away from HCL (after reducing over a two year span).
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Not sure if its really PMR
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