Osteoporosis or PMR symptoms

Posted by susanew @susanew, May 19 9:51am

I have both conditions and have researched medications for osteoporosis. So many side effects for different drugs. Which medication would be easiest to tolerate with PMR?

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@susanew

I have osteoporosis and upon xray a small L-1 fracture was found. Also I had been suffering from joint stiffness of hips, thighs, legs, groin. Had full bloodwork done and no markers for inflammation . Even though, I was diagnosed as having Polymyalgia rheumatica.. My doctor prescribed Methyprednisolone (Medrol) starting at 8 mgs. I have now somewhat tapered down to 1-1/2 mg. My question is could I have the same symptoms with the small L-1 fracture and not had PMR? Still tapering the steroids.

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I also have constant but not debilitating pain in my neck. Could that be something like newsusan has? Gee, I've a lot to learn!

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@bonesmcgee

I've been told to take tymlos or evenity at this point due to my numbers. I'm choosing the obvious choice-1 shot month for 1 year as opposed to daily shot for 2 years. I have osteoarthritis and wasn't aware it would be aggravated by eventity. I also have joint pain in hips and groin. What am I missing on making the right choice for my health?

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I've been on Forteo for over a year and am overly enthusiastic about the drug. Tymlos would be my second choice. I don't have any side effects with Forteo.

I won't consider Evenity, but that doesn't mean you shouldn't. I find it scary that a medication is approved that they don't even realize when approved that it is anabolic for three months and antiresorptive for nine. I have to take the cardiac risks to heart, since most of us will die of cardiac events. But then I'm 73 and my valves aren't whistle clean.
I'm not completely blind to the value of Evenity or Prolia, just almost completely blind.
I recognize that many osteoporosis patients have had success with each.

Your doctor, obviously, knows more and has seen more, far more than I ever will. Still, you have to question even him. And this is a great place to do it.

I just found out last week, from @mablin, that Evenity works at modeling bone, not remodeling. So it adds to bone without correcting for underlying defecit. Another strike against it. It could still be the very best drug for you.
Welcome to the wonderful world of bones. https://www.youtube.com/watch?v=Cd0YT-OV97c

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@gently

I've been on Forteo for over a year and am overly enthusiastic about the drug. Tymlos would be my second choice. I don't have any side effects with Forteo.

I won't consider Evenity, but that doesn't mean you shouldn't. I find it scary that a medication is approved that they don't even realize when approved that it is anabolic for three months and antiresorptive for nine. I have to take the cardiac risks to heart, since most of us will die of cardiac events. But then I'm 73 and my valves aren't whistle clean.
I'm not completely blind to the value of Evenity or Prolia, just almost completely blind.
I recognize that many osteoporosis patients have had success with each.

Your doctor, obviously, knows more and has seen more, far more than I ever will. Still, you have to question even him. And this is a great place to do it.

I just found out last week, from @mablin, that Evenity works at modeling bone, not remodeling. So it adds to bone without correcting for underlying defecit. Another strike against it. It could still be the very best drug for you.
Welcome to the wonderful world of bones. https://www.youtube.com/watch?v=Cd0YT-OV97c

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I think your information is incorrect regarding Evenity. This is my rheumatologist’s drug of choice. Read this for more info regarding Evenity
https://www.ncbi.nlm.nih.gov/books/NBK595381/
and this
https://www.evenity.com/about-evenity

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@susanew

I think your information is incorrect regarding Evenity. This is my rheumatologist’s drug of choice. Read this for more info regarding Evenity
https://www.ncbi.nlm.nih.gov/books/NBK595381/
and this
https://www.evenity.com/about-evenity

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There is later information on Evenity. But you made me think about why I think later information is more accurate than earlier information. When medications are first approved, mechanisms of action are not fully understood. Information on the internet persists even after evidence to the contrary. As this is your rheumatologist's drug of choice they are no doubt aware of current research. You might ask about the theory that Evenity is essentially anabolic only for the first three months and largely antiresorptive thereafter. Some of the osteoporosis doc are advising a three month script for Evenity.
If, as is thought, Evenity by blocking the sclerostin pathway allows plaque to accumulate in the valves, the consequences of that won't be evidenced for many years.

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@gently

I've been on Forteo for over a year and am overly enthusiastic about the drug. Tymlos would be my second choice. I don't have any side effects with Forteo.

I won't consider Evenity, but that doesn't mean you shouldn't. I find it scary that a medication is approved that they don't even realize when approved that it is anabolic for three months and antiresorptive for nine. I have to take the cardiac risks to heart, since most of us will die of cardiac events. But then I'm 73 and my valves aren't whistle clean.
I'm not completely blind to the value of Evenity or Prolia, just almost completely blind.
I recognize that many osteoporosis patients have had success with each.

Your doctor, obviously, knows more and has seen more, far more than I ever will. Still, you have to question even him. And this is a great place to do it.

I just found out last week, from @mablin, that Evenity works at modeling bone, not remodeling. So it adds to bone without correcting for underlying defecit. Another strike against it. It could still be the very best drug for you.
Welcome to the wonderful world of bones. https://www.youtube.com/watch?v=Cd0YT-OV97c

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Are you saying that Evenity builds bone for 3 months and then acts like Fosamax for 9 months? If so, where did you find this info? Thanks.

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Ripley, I first heard about this from @windyshores. And can't remember if she had a link or heard it from a physician. Then there was Paul Miller on a video, then I read it in something where it wasn't the main topic, so I'm having trouble finding that link.

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@gently

Ripley, I first heard about this from @windyshores. And can't remember if she had a link or heard it from a physician. Then there was Paul Miller on a video, then I read it in something where it wasn't the main topic, so I'm having trouble finding that link.

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I thought I had bookmarked the post about a new trial starting with Evenity being used for 6 months followed by Reclast followed by Evenity, etc. What caught my eye about that study was the exclusion list. Anyone with a bone marrow disorder was excluded.

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I'm sure your memory is correct. Even if you had been reading between the lines, it would remain good advice.
Being trapped between two advancing diseases sure complicates choice.

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@JustinMcClanahan

Hello @susanew, I'd like to invite @isabelle7, @leleettetou, @moni54 and @tsc to this discussion as they have mentioned PMR and osteoporosis diagnoses and may be able to share their experiences with seeking the best treatment for them.

@susanew, has your provider recommended a particular treatment yet? It is understandable to be concerned about side effects, has there been any dialogue between providers to ensure the medication won't counteract any particular treatment for either condition?

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Two rheumatologists have recommended Prolia.

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