I was reading some posts on here...always informative and helpful...and discovered that the injection I was given of Prolia two months ago is not a straight forward treatment.
My family doctor just ordered it for me and I was given no warning of any potential problems.
I had a bone density done...-2.4 on neck of femur.
What do I do now? If I don't have the second injection in June will I end up with
an even worse prognosis...do I have to take this forever with all the associated risks.
In real despair about this.
BTW I have PMR (plus suspected GCA)...began 60mg pred Dec 1st 2019...now on 18 mg and tapering 1 mg every 2 weeks (until I reach 15mg and then slower)
Many thanks to anyone who knows anything about this.
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agingfeminist
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It is a very effective and speedy way to improve bone density - and improves compliance because there are no tablets to forget or struggle with.
It has been discovered recently that as long as you are on the injections it is very effective but when you stop there may be a rapid loss of bone density, especially vertebral, leading to fractures
I would suggest you go to your GP with these and ask about adopting the approach the second article describes, zolendronate first and then Prolia which can then be continued as long as required with fewer risks. I doubt the single administration of Prolia will create major problems.
I have to ask: since this has now been around for 3 years, why do doctors not know about it? But there is no point being in despair - you are aware at a very early stage. Management of low bone density is not a short term job, you are looking at a couple of years anyway.
Thank you for such a prompt reply. Very interesting articles and I do feel a bit calmer. It was reading about jaw necrosis in immune compromised patients that really alarmed me...I was not told about any possible side effects!
I will follow up with the GP and just left a message on his answer machine to give him a heads up...and asked if he could find out more information!
Sorry ...here I go again, but you mentioned the jaw necrosis and that also was my biggest fear. I was advised that before starting Prolia, have a full dental check up and if there is any work to be done, do it now because it isn’t advisable to have “invasive” dental work done while on Prolia. Fillings, crowns are fine on Prolia, just not root canal or extractions. Since then, and knowing now that it’s possible I may be on this longer than the original 3 years I was told, the dentist has said that should an extraction or whatever be necessary down the track she would refer me to an oral surgeon to do the work, and also to have it done just before the next shot is due when your body is at the lowest end of Prolia cover.
No experience myself , but if you look on the page that your post is on now , on the right hand side you will see a list under ' Related Posts' which will include the answers from previous posts about Prolia .
When you check on each related post you also see more ' related posts ' options on those pages too so you can build up quite a lot of information from scrolling through the old posts and the various answers .
I'm sure you will also get some answers to help you on your own post soon too.
Thanks again Blearyeyed! I have just found the relevant link...I hadn't noticed them before. I work on a small laptop and things tend disappear off the screen very quickly when I scroll down!
I have had Prolia injections for 6 years now. No obvious side effects, although I have had other medical issues ongoing. I was aware of the possible effects from stopping it, but at 75, I am not unduly worried.
Your -2.4 score is not considered osteoporosis, it’s still in the osteopenia range, so unless you have other high risk factors Prolia is not usually considered until the scores are above -2.5. I suspect your dr has taken this approach due to you being on pred as it’s a contributing factor towards osteoporosis and you’re almost there. Eileen has given you some wonderful advice as always, and the articles are very informative. Perhaps as she says, take them to your dr and discuss trying biophosphonates first then Prolia, you’ve only had one injection so changing at this point is possible.
Changing you mean? Yes, a current recommendation is to switch patients to zolendronic acid when stopping Prolia although the best results see to be achieved by using it first for up to 2 years and then using Prolia - this seems to reduce the rebound loss of bone density that is seen in a lot of patients when stopping Prolia. But you can switch.
I seem to remember reading that that biphosphonates don't make a big difference to fracture rate. but I will take to my GP so he can engage with all this.
I think you may have read my comment on another post regarding my experience with Prolia over the last 2.5 years so I won’t bore you with it all again but yes, you may get side effects, you may not. You also may get good improvement like I have but it doesn’t come without risks....and probably long term treatment of some sort or other. For me though, it was quality over quantity. I’m 65, was very fit and agile, never had a broken bone, have 12 grandies under 8, 5 adult children, danced, yoga, walked, took supplements, ate well. Had no idea I had it until diagnosed with PMR and a routine dexa scan was done. My osteoporosis was so bad and my risk factors so high ( post menopausal white female older than 60, hereditary, I’m 45kls ringing wet, on high dose pred for GCA at the time etc) the dr told me I could break a bone coughing, and should that happen I had a 50% chance of needing a Carer, 25% chance of needing a nursing home and 25% of a fatality. Weighing it all up, if I have to be on Prolia for 10 years I’ll be 72, and hopefully still mobile. I’d rather be able to live life to the fullest now, and see how I’m travelling at 72. Now in saying all that, your score isn’t even in the osteoporosis range, so you’re no where near where I was so you have time to weigh up the alternatives before you go down that path. Don’t be frightened of Prolia, but all drugs carry risks. I’m inclined to agree with Eileen and belief me she knows her stuff. Given the latest research that Eileen has provided which wasn’t around when I started this journey, maybe ask the dr about a biophosphonate first before Prolia. He can only state his case for why not.
Thank you so much for this detailed response. You are so right...need to make a good risk assessment...and EVERYTHING has side effects. I knew osteoporosis would catch up with me...I couldn't have milk since early childhood and broke bones at every fall.
Have done exercise and high calcium forever...
I think my doc was really concerned about the high doses of steroids...but it would have been a good idea if he discussed options...and told me about the risks...I had just come out of hospital following an emergency admission prior to a GCA diagnosis. I was sent off the next week for a Prolia injection...
These things need weighing up...and doctors and patients need to partner in these decisions.
I left my GP a message on his answer machine yesterday, asking for him to re-evaluate whether I should continue with Prolia...and pointed out that he hadn't flagged any possible side effects...
I so appreciate your insights! I was in a total panic...and have calmed down!
I just stopped after two shots. You will be OK whatever you decide to go. I just did not Want that drug in my body anymore. It’s called karma or the golden rule.
Because he does have a duty of care - and believes he is recommending the best approach for the problem.
It is illegal for pharmaceutical companies to pay doctors to prescribe their products - they can pay them for other things that might persuade them to recommend a particular drug, That is not the same thing even if it may result in a bias towards prescribing substances.
"Pharmaceutical companies can't pay doctors to prescribe their drugs; that sort of incentive is illegal. But they can pay doctors to talk about their drugs in speaking engagements, and pay for consulting work and conference attendance. They can also send 'detailers' (salespeople) to doctors' offices to promote their drugs, possibly paying for a meal or leaving drug samples behind. These types of incentives may make physicians consciously or unconsciously more inclined to prescribe a particular brand of drug, or prescribe it in greater quantities."
It isn't the same thing at all and in Europe they aren't even allowed free pens these days! You are implying they receive remuneration for each prescription - and that is definitely not the case.
I would like some information on Prolia please. I've had 3 injections at this point because of 4 compression fractures while on Prednisone [I am not doing a slow taper and at 6 mg. with Leflunomide also [for over a year.] Now I have a tooth issue which needs to come out, and the dentist wants to do an implant. I've had successful implants before. HOwever, he wants me to see an oral surgeon for another recommendation because I've been on Prolia which he said can cause osteonecrosis. Great, another side effect? anyone have any personal experience with this? the last thing I want is a dying jaw bone! Thanks.
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