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.

John, Volunteer Mentor | @johnbishop | May 18, 2023

In reply to @darcy516 "I recommend the book by Kate Gilbert: Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide." + (show)

Welcome @darcy516, Several members have recommended the book by Kate Gilbert. I thought I would share the link for you since new members have a short period of time before they are able to post links to protect Connect from spammers.

Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide by Kate Gilbert
— https://www.goodreads.com/book/show/22402185-polymyalgia-rheumatica-and-giant-cell-arteritis.

Do you have PMR or GCA?

c75 | @c75 | May 18, 2023

In reply to @lizward46 "Hi Mary. I too have been recently diagnosed with PMR. With the little I know, my..." + (show)

Thank you well said! It is comments from people going through this journey of PMR that have helped me. I am on my second regime of Prednisone and weaning. My pain has increased and am using lotion from my Massage Therapist until I get back to my Rheumatologist the end of the month. As you said use what you can that works.I am also on Calcium and Vit D. I have both PMR and Fibromyalgia. Arthritis and degenerative disc's do not help b7t I keep going! Best of luck finding your place that works.

Linda Moross | @lmoross | May 19, 2023

Prolia is a good medication. I have been on it several years with no side effects.
Best wishes.

hikrod | @hikrod | May 19, 2023

In reply to @maryb2023 "Have recently been diagnosed with PMR. Any advice would be greatly appreciated" + (show)

I also have just been diagnosed also, was diagnosed temporal arteritist 3 yrs ago, had biopsy right side, negative. As I go through symptom list for both I check items on both. Been on/off prednisone for 5 yrs. Advil helps but can’t take enough. Tried 7 different nsaids to no avail. Prednisone is usually 20 mg per day till everything is okay, get 1-3 weeks on Advil before back to prednisone. Tired of the cycle. Any helpful comments are welcome.

mansplainer101 | @mansplainer101 | May 19, 2023

Surprised there has been no mention of Fosamax in this thread.

John, Volunteer Mentor | @johnbishop | May 19, 2023

In reply to @hikrod "I also have just been diagnosed also, was diagnosed temporal arteritist 3 yrs ago, had biopsy..." + (show)

Welcome @hikrod, Since you mentioned you also have temporal arteritis (GCA), you might find the following discussions helpful:
--- GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica): https://connect.mayoclinic.org/discussion/temporal-arteritis-1/
--- Medications for Temporal Arteritis/Giant Cell Arteritis (GCA): https://connect.mayoclinic.org/discussion/temperol-arteritis-or-giant-cell-arteritis/
--- Adjusting to life with temporal arteritis: https://connect.mayoclinic.org/discussion/would-like-to-hear-from-people-that-have-gone-thru-or-going/

Are you working with a rheumatologist on your tapering schedule for GCA?

hikrod | @hikrod | May 19, 2023

In reply to @johnbishop "Welcome @hikrod, Since you mentioned you also have temporal arteritis (GCA), you might find the following..." + (show)

Yes, at first I got the cluster headache tag, went thru ENT and neurology, I kept telling drs I don’t have! Finally stopped seeing neurologist, and ent said there was noting wrong with sineses! Ent was the dr that noticed and diagnosed GCA! My rheumatologist is now working with me instead of pushing me off! I don’t blitz and taper, more steady at 10mg 2x daily then my aper down! As things return I go back! When everything seems good I quite pred and go on advil. Tried nsaids to no avail!

steph1939 | @steph1939 | May 20, 2023

Yes, I’ve been on Prolia injections for several years and I don’t have any side effects from it. My bones are in good shape and I have been on prednisone for 1 1/2 yrs.

mpr | @mpr | Nov 28, 2023

In reply to @maryanncoyne "Yes, developed a skin rash and was very uncomfortable. Nothing seemed to help after seeing primary..." + (show)

Hi Maryann - did this improve 6 months after the prolia injection or 6 months after it had eliminated (i.e. 12 months)? My skin reacted immediately and 9 months later shows no improvement.