I'm a GCA patient since AUG 2022, have gone from 60 mg PRED per day to 20 MG PRED per day at present. My Rheumy put me on Fosamax 3 weeks ago and I have not tolerated it very well. The runs, nausea, and my blurry eyes have gotten even worse. He told me to stop the Fosamax and instead wants me to take Prolia shots every 6 months.
I have a Dexascan scheduled for next week. He told me that no matter what the results of that scan, I need to be on either Fosamax or Prolia. When I told him I didn't understand the logic of that, he told me he's following the guidelines established by some USA group (can't remember who). Once I get those results, I'll decide whether or not to take these meds.
In the meantime, here's my question: do any of you have any experience with Prolia?
Thank you
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montebello
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Thanks Rosbud. A follow-up question: I seem to recall reading that once a person starts Prolia, they can't stop unless they switch to another drug like Fosamax -- apparently because stopping it will cause a rapid deterioration of the bone. In other words, once you start you're "in for life." My rheumy said this is NOT true, but again I've read various things to the contrary. What is your understanding on this matter.
BTW, I'm glad you are able to take this with no problems!
Your rheumy may have said it isn't true - but he is wrong. Either you are on Prolia for life OR you must take a bisphosphonate for a time (at least 2 years) after stopping the Prolia to maintain the bone density gained. If you don't there is a high risk of rebound loss of bone density and consequent fractures, particularly spinal ones.
"Denosumab discontinuation is associated with a severe rebound effect combining elevation of bone remodeling markers for two years and loss of the gained bone density. In the absence of a potent bisphosphonate prescription at denosumab discontinuation, multiple vertebral fractures are frequent. The median number of vertebral fractures is 5, within 7 to 20 months (median 11) after the last denosumab injection. A potent bisphosphonate prescribed at denosumab discontinuation may reduce this risk. This strategy requires close monitoring of bone remodeling markers and adjustment of treatment if bone remodeling is not controlled."
"Denosumab is a very effective treatment of osteoporosis, easy to use and very well tolerated. Due to some associated risks, a close clinical follow-up is necessary. Before the first injection, it is necessary to correct hypocalcaemia or vitamin D deficiency when present. Calcemia has to be followed in case of renal insufficiency. Injections of denosumab should be done scrupulously every 6 months (± 3 weeks). Discontinuation of denosumab is associated with a severe rebound effect characterized by increased markers of bone remodeling, a rapid decrease of bone density values, and a risk of multiple spontaneous vertebral fractures. The administration of a potent bisphosphonate (zoledronate, alendronate) minimises or avoids this rebound effect."
It is an excellent medication - used properly. It isn't simple though.
I have had Prolia every six months since my dexa scan at the beginning of my (seemingly endless)PMR journey. I have had no problems with it. I know two other people who have been on it for roughly the same amount of time with no problems. If I don't have problems with it I am happy to continue for life (why not?). The risk of severe osteoporosis only increases as one gets older...most of the people (80 -90+ year olds) in my mother's care home had severe fractures...I would be grateful to have two jabs a year to prevent that. And if I have to stop for some reason then I will take the bisphosphonates (which are of course far from ideal).
You need to keep up the calcium in your diet when you are on Prolia and have a blood test before each injection to test the calcium in your blood.
It is a simple, painless injection...you can easily administer it yourself (it comes with clear instructions).
Thank you for this response. There are two things that bother me about Prolia. First, if I search for Prolia reviews, most of them are horrible. I realize that most people won't submit a review unless they have a complaint, but some of the stories out there about Prolia are bothersome to say the least. I am glad for you that it's working well for you.
Secondly, if I go to Prolia and experience some bad side effects, I'm kinda up the creek because it seems I cannot tolerate Fosamax. So if I have to get off of Prolia for any reason, what fall back position would I have?
In other words, if Prolia works, that'd be great. If it does not work (for me), I'm up the creek.
There are other versions of bisphosphonates besides Fosamax which is alendronic acid. There is also risendronate which is also tablets and 2 administered by annual infusions, zolendronate and ibandronate.
The Guidelines he is following are the American College of Rheumatologists (ACR) and EULAR (their European colleagues) who issue international guidelines. Part of the criteria include age - and at 75 they assume everyone is heading for osteoporosis which these days isn't always the case, Which is why a dexascan is advisable to see.
I had to start taking Prolia because I've got severe osteoporosis. I have no reaction to it and I've tried other drugs that I did not do well with. However you have to know that once you start Prolia you cannot stop it because you bones will start to deteriorate much quicker. That is according to my rheumatologist.
I’m another one who has been on Prolia for some time - in fact, exactly ten years. I’ve had no problems at all so far, but like you have wondered what precisely my options would be if for some reason I had to stop it. So thank you for this thread, and PMRpro too for confirming that annual infusions are indeed an option. Like you I couldn’t tolerate the Fosamax/ alendronic acid, and even well before PMR and pred, my DEXA scan showed osteoporosis…..
years ago I was put on Prolia for bone loss due to cancer treatment. After 5 years and a lot of research I decided to go off it. I was given a Reclast shot (a once a year shot) a year ago. My Dexa scan will be this June. If you go off Prolia, your bones will revert to their previous state. I would have NEVER agreed to this med had I known, but at that time they did not know. My doc gave me one shot of Reclast and we are hoping it shows maintained gains. May possibly need another shot. The ONLY group that prolia really helps are the very frail very old people whose bones are falling apart. They will have to take it forever, but their bones strengthen.
I have been on Prolia for nearly 2 years. I have had 3 vertebral fractures since I stared on pred. For the first year I had to take AA. I was switched to Prolia for the sake of my stomach, and Prolia is certainly more resent. I asked my rheumy about having to go back on a biphosphonate after Prolia, and he agreed that it is true, but added that nobody has any experience of what happens with Prolia after 12 years.
Personally, I'm glad to have bone protection for the time being, and not to be taking AA, The rest I'll worry about when it comes to it.
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