Promise.

[jimister]

Does anyone take Prolia injections and is not having any problems. It would be nice to hear something positive about it. I have had 4 injections now I would rather not have to take them but I also do not want rebound fractures of my vertebrae. My bone density is very bad I'm told but I have never fractured I'm only in my fifties and I fear for my future if I don't treat the Osteoporosis now.

[Kaarina]

Hi jimister, Those that are not having problems with Prolia injections do not join a forum like this. They are getting on with their lives. I know of one person who lives near me that has no problems with Prolia. If you have had 4 injections and have had no side effects, sounds like you are doing ok with this OP drug.

[jimister in reply to Kaarina]

Thanks for your reply. I feel I am having a few side effects but if I stop taking it I stand a good chance of a fracture and the pain that goes with that. I have been offered the yearly infusion instead which I will think about but that also has side effects. If I don't treat this condition at all I fear what state i will be in 10 years from now. You are damned if you do and damned if you don't it seems. Hopefully one day they will come up with a better way of treating OP.

[Kaarina in reply to jimister]

I agree, it is a very difficult decision to make. As long as you can cope with the side effects on having the Prolia injections, then if I were you, I would continue too.

[veriterc]

Have you asked the Royal Osteoporosis Society? I've found their advice as good as I got from the top practioners in Europe (why do we persist in believing "the NHS is the envy of the world"? It's not!). I am sure they can give you some good examples of success stories.

[Sunseaandsand]

Hi,

I agree with Kaarina, generally you will not find people on this forum who are not experiencing bad effects from the treatments.

It sounds like you are tolerating Prolia pretty well, you do not mention though what side effects you are having or how bad they are.

I have been told by the specialists that there is evidence that coming off it does cause rebound fractures, but I was also told that it gives excellent results at building bone.

I personally do not tolerate the bone meds at all well, if the Prolia had not given me such terrible side effects I would have stayed on it for life.

I now have 5 spinal fractures that have resulted in my becoming disabled and dependant on others for my care having lost my independence..

On that last note if it were myself faced with your choice I would be inclined to stick with the devil I know rather than change anything.

It is so very hard but we have to make our own choices and go along with that.

On a positive note you are free of fractures and I think you are doing everything to avoid them.

[Siamang]

Agree that those who don’t have problems or question do not search such sites!! I have at least 5 friends who have prolia injections without any concerns. They are all active (have not had prior back or joint issues) If I wasn’t to have dental work I may have not been as aware too.

[Elaineheg]

I had 6 Prolia injections with no problems at all. Since my latest dexascan indicated ostopenia not osteoporosis Medicare will no longer pay. Doc said danger of fractures after discontinuing Prolia so put me on Reclast. Had one infusion of Reclast so far with no problems, but will think of discontinuing all after next dexascan. I am 85 years old.

[jimister in reply to Elaineheg]

Shame you could not continue with Prolia if you had no problems with it. Especially as it was probably the Prolia that got you from Osteoporosis to Osteopenia. I am in the UK so NHS pays for it and will continue to do so. The thing I don't like is the problem of fractures if you want to stop it. It seems such a strange thing for a drug to make you gain more bone density and then make it worse when you stop how is that beneficial. I have been offered an infusion next time which you can have a break from after a few doses. I will think about that and hope I don't suffer bad effects from it. Seems i don't have much choice if i want to avoid rebound fractures. I wish you well with your treatment.

[walk21]

I know at least six people in our support group who have Prolia injections without problems and with good DEXA scan results. They can now continue for ten years, so will do that and hope for something better one day!

[lawdog]

Hi! My younger sister takes a Prolia injection twice a year and she is in her thurd year without the side effects mentioned on this venue. She's in her 60s.

[jimister in reply to lawdog]

Thank you for your reply.

[Posy-White]

Hello Jimister

I didn't have any real problems having Prolia, the first injection mild flu symtoms 2 days and second a bit of a urine infection (might not have anything to do with it?). I was on Prolia for 5 years and improved to the level of being in the mid osteopenia range. Unfortunatly during the time I moved house and therefore hospital, large London teaching hospital to local small hospital in the sticks. News did not travel fast to this hospital so was advised in June 2017 that as I didn't have Osteoporosis I just needed 6 month checking blood tests. This was pre the September 2017 advice not to take a break from Prolia without going onto an alterative medication to prevent rebound fractures.

I joined this forum because I ended up with rebound 8 spinal fractures!

It's so hard to know what to do for the best, Prolia is still available and now the risks about rebound fractures are known your doctors will be able to support you.

I've changed hospitals because of what happen to me. I'm on the daily 2 year course of Forsteo injections, I asked the Consultant at my last appointment about what will happen when I end the course, the answer was I'll give you an early appointment and then we can discuss this but at the minute there is nothing better for you than going back on Prolia.

There must be lots of people having Prolia who do not have problems. Good luck.

Best Wishes Posy White

[jimister]

Thank you for your reply. Sorry that you ended up with fractures. It seems such a terrible effect from this drug I wish it was not the case. If you can't get on with the other treatments then you have no choice but to stay on Prolia for life. I am thinking of going onto the yearly infusion as I feel I am having a side effect from Prolia. I just hope that the infusion doesn't cause any side effects. It's time they found a cure for Osteoporosis as it causes misery for so many people.

[2019pro]

I am sure it has been stated somewhere... but what amount of time can you take the prolia before going off and taking a different med? I am 64 and dr keeps wanting me on it, but my fear is what do I do when I have to come off of it?

[HeronNS in reply to 2019pro]

Are you asking if there is a maximium amount ot time that you can be on Prolia (denosumab) and then have to come off it and take another medication? I don't think it works like that. You can commit to staying on Prolia for many years. Forteo (aka Forsteo or teriparatide) is the drug which can only be taken for two years and then followed up with another med. Lately people are saying they are prescribed Reclast (zoledronic acid). If you take one dose of Prolia and it doesn't agree with you, you have bad side effects, or whatever, there appears to be no risk of rebound osteoporosis so no need for anotther medication, unless for some reason you want to take one. However, after two doses of Prolia the risk of rebound osteoporosis if you stop taking it becomes a real possibility and another med, again often Reclast, is necessary.

But I looked back at your earlier posts and your DXA scan t-score although close to the osteoporosis line is still not osteoporosis so I don't know why a doctor would suggest you start a drug from which there is really no return. You sound like a prime candidate for using natural means to improve your bone density. I managed to improve mine, and I was older at that time than you are now!

healthunlocked.com/pmrgcauk...

[2019pro in reply to HeronNS]

thanks HeronNS -

I just was checking as I couldn't remember if you "had" to go off Prolia after a certain time... as I am understanding it, the rebound could occur after 2 doses and then you would have to take another one. Does that also hold true (the rebound) if you stop taking other meds? i.e. actonel, fosamax, boniva, raloxifine etc

I am still resisting the Prolia - trying other methods first - but I don't think they are very happy to hear that...lol

[HeronNS in reply to 2019pro]

I'm not a medical person. I only know what I've read and what others have told us in the forums. As far as I know Prolia, which is not a bisphosphonate, is the only medication which actually causes a rebound osteoporosis rather quickly after it is discontinued which is actually worse than the original condition. It is only recently that I gathered through what people were saying that Forteo (teriparatide) also needs follow up medication, but I think (don't really know and stand to be corrected) that what happens with the teriparatide is the improvement is lost, not the same catastrophic event that Prolia can cause.

From what I have read Prolia should never be first line treatment. It should be reserved only for those who are in terrible condition for which other medications have not worked and who are prepared to stay on it indefinitely. I keep reading on the forums comments by people who have taken Prolia and say it has ruined their lives. These may be people who took it for some time without problems but eventually began to develop severe side effects and now are finding they may not be able to safely come off it. I think this is a horrendous possibility and makes me wonder why this medication was ever approved in the first place.

[8fractures]

Hi. I too joined this forum to share experiences. I'm 69 and had 6 prolia (denosumab in the UK) injections uneventfully i.e. no side effects at all in 2015-2017. The advice at the time was that one could only have this treatment for 3 years, due to the risk of "atypical femoral fractures" if it was continued beyond then. Unfortunately, I was put on a drug holiday and within a few months of cessation, suffered 8 spontaneous vertebral fractures. This has been life changing and after 2 vertebroplasty/kyphoplasty repair procedures on my back last year, I'm still suffering pain and have had to severely restrict my activities. I feel that our generation is (are?) being treated like guineapigs because a male cousin (79) who recently completed a 5 year course of denosumab injections was told that he can continue for another 5 years. Whatever you do, please ensure that you are offered an alternative treatment after completing the denosumab/prolia course.

[jimister in reply to 8fractures]

It is dreadful you have had to go through that. Before I went on the Prolia I was only told by the consultant that if I stopped taking the Prolia that I would loose the bone density I had gained very quickly. There was no mention that it would be worse than before to the point that I would probably end up with fractures of the vertebrae. I don't think I would have started it in the first place had I known.

[8fractures]

A lot of us feel the same way...by the way, if you do FaceBook, there's a Prolia side effects and complaints closed group. I mention this with a degree of caution as many of those posting clearly have unrelated underlying health issues which may not be related to Prolia at all. Fortunately you are not suffering any side effects and you are in a position to do something to reduce the risk of rebound fractures which, to be fair, don't happen to everyone.

[jimister in reply to 8fractures]

I am suffering a lot of upper abdominal pain which eases when the injection wears off and starts again after about two days of having the injection and then carries on. I have now been offered the yearly infusion instead which probably has many side effects as well. I have 5 months to think about it. But it seems I'm stuck with having one or the other no matter what.

[8fractures]

I had a Zoledronate infusion in November as something had to be done to try to prevent further fractures. So far, no side effects. I do not know if I'll be having another one after a year as since May, I've been having daily teriparatide (Forteo) injections as I'm now classified as a severe case.

[jimister]

The OP nurse told me for 3 years I think and said I could then have a break from it as it should hold my bone density stable. But I don't know how long a break I can have before I have to start again. I hope I'm like you and have no problems with the Zoledronate. How are you finding the Forteo so far?

[Happines]

Took Prolia injections for 5 or 6 years without any problems. Then started having upper leg pain that persisted for over a year,fell and broke my femur. Surgeon said it was atypical break from these bone building meds. Sure wish I had never gone that route. Research,Research,Research! DRs. really push taking them.

[jimister]

It's very worrying. So what do you take now for your bones?

[elaine2447]

Please be aware that the FDA gave out a warning about Prolia in January 2017 in that it has to be a lifetime commitment, as leaving it off can cause rebound fractures. Subsequently a black box has been slapped on it fiercepharma.com/pharma/con....

[elaine2447]

Sorry the link has gone a bit strange, but it is a must read

fiercepharma.com/pharma/con...