PMR, prednisone and bone health: Anyone taking Prolia?

Posted by dermnurse68 @dermnurse68, Apr 6, 2022

Due to the fact that I was on prednisone for 5 years I am now at greater risk for bone fracture’s, I took the Reclast for 3 years and had some improvements, however, my endocrinologist wants me to start the Prolia injections ever 6 months. I am so not wanting to go down that path due to side effects but I don’t want any more problems. Has anyone had any experience with this medication?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

After being diagnosed with osteoporosis in 2019, I was advised to begin prolia. I had one shot and two months later developed severe jaw pain with infection around my dental implants which had been in place for twenty years. The implants were removed but the pain and infection continued for months and I was treated for osteonecrosis of the jaw. Fortunately, the jaw finally healed after months of intense pain, but I have been advised not to use prolia. This occurred while I was in the midst of a flare of PMR and using prednisone for pain and stiffness.

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Sorry. I'm only a few months into my diagnosis of PMR so I've not heard of some of these things and don't know if they're actually available in Canada. The jaw pain must be excruciating. I'm having a slight flare right now and had to increase the Prednisone a bit, but the bit isn't kicking in yet. I wish you well in this journey. Positive vibes to you.

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Yes, developed a skin rash and itching for several month. I consulted several doctors and even went thru allergy testing and all clear on those. During months 4 and 5 and suspected it the shot. Fortunately I didn’t get the second shot. The rash and itching slowing got better and disappeared.
Hope this helps. Now if the PMR would do the same!

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@dermnurse68, There are quite a few discussions about osteoporosis, treatments and specifically Prolia in the Bones, Joints & Muscles group here: https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/

Specifically, you may be interested in these discussions:
- Prolia: https://connect.mayoclinic.org/discussion/prolia-1/
- Prolia treatment for osteoporosis: https://connect.mayoclinic.org/discussion/prolix-treatment-for-osteoporosis/

I know when reading about all the possible side effects and getting first hand experiences, it can be quite alarming. Keep in mind, people who don't experience side effects rarely post on forums. For example my mom takes Prolia, has done so for years, and has had no negative side effects. She has a couple of autoimmune conditions, but not PMR, nor is she on prednisone.

Did your endocrinologist explain why she wants you to switch from Reclast to Prolia? Did you discuss other options too?

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Yes, developed a skin rash and was very uncomfortable. Nothing seemed to help after seeing primary care doctor, Dermatologist and had allergy test run. Finally I determined before my second shot that was the cause. Slowly after 6 months the rash and itching faded away. I would suggest reading about the drug and possible reactions. This was mentioned at the very bottom of the list.

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I take Prolia Injections every 6 months for the past year with no side effects. It has helped with my bone density. I has Osteoporosis and now have Osteopenia.

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Have had several injections of Prolia with no side effects at all. Best wishes to you.

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Have recently been diagnosed with PMR. Any advice would be greatly appreciated

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@maryb2023

Have recently been diagnosed with PMR. Any advice would be greatly appreciated

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Hi Mary.
I too have been recently diagnosed with PMR. With the little I know, my advice would be to read as much as you can about PMR from reliable sources and find yourself a rheumatologist that u trust. Understand that everyone who develops this condition brings with them their own unique DNA, possible underlying conditions and a variety of lifestyle choices. That being said if you decide to take prednisone your system may not react to it the same as others have. There are some very informative stories on Mayo Support but ultimately you are the steward of your own body and will find what works for you. BE PATIENT This isn’t a fun journey but hopefully you can return to a somewhat normal life and control your PMR. Liz

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I recommend the book by Kate Gilbert: Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide.

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