My experience with PMR and Fibro: My story is the... - PMRGCAuk

PMRGCAuk

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My experience with PMR and Fibro

Lin6075 profile image
7 Replies

My story is the same as everyone else. However, I suffered a stress fracture the other day and was told it was because of the prednisone. My bone density tests were good, leaning toward osteopenia. Then out of the blue this happens. I have been on the pred. for 1 year and 6 &1/2 months. My dose was down to 6mg before this happened. The pmr flare was the worst and pred had to go back to 20 mg. Now down to 8mg. I am also on methotrexate for the same amount of time.

I was told (after the fact) that prednisone can thin bones in 5-6 months.

Dr. wants me on estrogen for the bone loss and thinks it will help the overall aching. Has anyone tried estrogen along with all of these meds?

I am 69 years old and also have fibromyalgi

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Lin6075 profile image
Lin6075
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7 Replies
angiek profile image
angiek

I don't know why no one has answered your question yet Lin6075, I certainly hadn't realised/been told that pred could affect bones that quickly, so will be following this to see what others say. Which bone did you fracture? Hope it's not too sore.

HeronNS profile image
HeronNS in reply toangiek

I understand the worst damage occurs within three months, but I'm not sure if the body gradually adapts, because pred does affect our ability to absorb calcium properly, or whether it's because our dose is likely highest and therefore more apt to cause damage. Certainly it's possible to minimize the effects, through diet and exercise, just as we can minimize other bad side effects of pred, like increased blood sugar.

PMRpro profile image
PMRproAmbassador in reply toangiek

There is also the point - what was the bone density BEFORE pred. Unless they do a dexascan before or soon after you start pred they cannot know whether the low bone density is due to pred or was already there.

Lin6075 profile image
Lin6075 in reply toangiek

I fractured L1 and it was completely spontaneous. No accident, fall or anything, Got up from a chair and wham I was down in such amazing pain. It is a wonder we can survive such tremendous pain?

Jim-CJ profile image
Jim-CJ

Hi Lin6075,

My wife was on Prednisone for 2 1/2 years for GCA and started to have vertebra fractures that all the docs said was due to Prednisone. As of now, 3 1/2 years later, she has had 14 bone fractures. But the good news is that she has only had 1 fracture (a rib) in 7 months, the exact time she has been on Forteo for her bones. She is also on Actemra to help tapering, now at 11 mgs of Prednisone. Get on Forteo quickly. My wife waited too long.

Best Of Luck & Please Take Care,

Jim & CJ

Lin6075 profile image
Lin6075

Hi Everyone

Thanks for the replies.

One fracture was enough for me. I am so sorry your wife has had 14. I will look into the meds you suggest.

I had a bone scan at the beginning of all of this and I was in the slight osteopenia stage.

I have a lot of trouble taking medications (allergic to a lot) so my Dr. has decided to try good old estrogen. She thinks it will help with the bones and with the pain. Has been 3 days and all I can do is wait and see. What a blessing if it helps with the pain.

Just trying to understand the thought from HeronNS; So the thought, the worst has been done in the early months of prednisone and the damage may lessen over time?

Hope you all have as pain free day a possible.

Have a wonderful God given day

Lin6075

HeronNS profile image
HeronNS in reply toLin6075

As PMRpro says, unless we have a DXA scan at the before or just after starting pred we have no way of knowing whether the damage to bones was caused by pred or if we were already experiencing bone thinning. Most people never take pred, yet most people do experience gradual bone thinning as they age. I honestly don't know whether our chances of fracture are really much greater if we've taken the moderate doses needed for PMR, or even the higher doses required for a few months to treat GCA, especially if we've taken all steps to counteract any effects of pred (diet, exercise, supplements).

One thing which happened to me is I developed very tight, spasmed muscles in my back. These were released through certain physiotherapy techniques, but at the time my physiotherapist said muscles in the back can become so tight they can cause vertebral fractures. So there can be all sorts of reasons why we fracture, or why most people don't even when they are told they have thinning bones. It's too easy to blame one medication when there are so many issues going on in all our lives which can have either negative or positive effects.

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