Hello all you lovely people!
After 6 years on pred (currently on 10 mgs) my bones have objected (I had osteopenia even before I started). I am now officially osteoporic.
My doctor wants me to start Prolia injections after a visit to the dentist.
What are people's experiences of these in terms of side effects whilst still being on pred and having PMR.
Thanks in anticipation of all your knowledgeable replies!
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Thanks DL. I'm just checking out the Prolia posts now.......
I posted about this, roughly a year ago. I’m fairly convinced it causes the PMR to flare: 4 doses, 3 reactions, though other factors may be to blame.
I suppose it depends on how severe the osteoporosis is - I was osteoporotic before having to start on pred., so between the devil and the deep, as far as I’m concerned.
My previous post is under “pinned posts”. A friend, who does not have PMR, has recently had her first dose and has reported increased back pain, though I think that has resolved.
Incidentally, following my last injection, at the end of March, I was prompted to post regarding the Prolia, only to realise that I already done so, exactly a year ago! It definitely causes aches and pains for me.
I have had Prolia for nearly 2 years. I haven't noticed any side effects, and it is better than the AA I had before - kinder on the stomach. However, when you come off it, you have to go back on AA or something similar for a while.
Thank you Sharitone. MY doctor has said I will have to have Prolia injections every 6 months for life. She has also said that it saddens her to see so many unnecessary fractures and that if I fractured a bone in my spine I would be in constant pain.....HMM????
She is certainly correct about the pain of a spinal fracture until it heals and that often takes a few months.
Thank you Pro - better to be safe than sorry methinks?
Definitely, though I have collected 3 vertebral fractures since I started on pred, and I can't say I would have noticed, except that I have lost an inch in height. On the other hand, my mother who has osteoporosis in the spine, has been in constant pain for years, despite maximum morphine patches.
So yes, Prolia is a million times better than that, and you won't even have to worry about what happens when you stop it!
I have also not suffered any side effects from the prolia injections. However I was not told that you cannot just stop by my rheumy and when I asked the ROS for advice they were surprised I wasn’t offered AA infusions instead.
I have had prolia injections every 6 months for the past 4 years with no problems. Do write to me if you need any other info.
Thank you - it seems that the majority of people have not suffered any major side effects so I will almost certainly have them.......
I do know a few other people without PMR who have them without any problems.
My husband used to complain of backache though he also had healing.spinal fractures so it is difficult to know which caused it - I assume if the spinal bone density is very low you might feel something and his was.
Thank you Bluesew. It's good to hear you have not had any side effects. I think I will probably go ahead as most replies seem to be posiitve.
The thing about prolia is that as your doc has said you are on it for life. If you come off it, research shows that your bone density will reverse and worsen - you simply can't stop once into the programme. (It is more complicated than that, but that's it in essence.) That is the thing you need to be aware of and be ok with.
My mother was on prolia for many years, had GCA also, no side effects. Perfectly fine on prolia. She started around late eighties and lived to 99, falling multiple times with no fractures!
However, when first on pred she was started on annual Alendronic Acid infusions at the hosptial which were also fine. They are time limited so you are not on them for life. They swopped them, because of cost or convenience, to a nurse service without telling us that she would be on them for life.
This wasn't a problem at her late stage in life, but would have been to me at 65. (I was wrongly put on it because the GP did not know it was for life!! I later had a scan and was found not even to have osteopenia. Luckily only took one dose.)
I too am trying to decide to take prolia, after my rheumatologist said I might end up as bent over old man in lots of pain without taking any bone drugs. I already have one spinal fracture, and having suffered a lot of back pain recently, I wonder if i now have others.I have also been offered a zolendic acid infusion. I don't know which is best.
I've delayed the decision until I get my teeth sorted(2 extractions and a possible implant). The worst side effect for a very small percentage is necrosis of the jaw, which my dentist has only seen once in her career.
It's good to hear the positive stories here.
My one time experience with Zolendic acid was a feeling of having a terrible flu with fever and body aches. This is actually a known side effect of the drug. I told my rheumatologist I don't ever want to be on that drug again. So I'm back to Prolia and have been using it for quite a number of years.
I remember my first Aclasta injection some years ago. The next day I had to film a TV commercial (I am an actor). I remember shivering and nearly fainting but the show must go on and I got through it. In subsequent years, I was fine.........but you could only have it five times and my number was up after that. Now we will try Prolia . Darn this getting older...!!!
GCA no PMR thankfully and my Prolia shots are hardly noticeable with no side effects. Good luck 🍀
Thank you. That's encouraging!
I was on Prolia for a couple of years with no side affects that I noticed. I ended up with dental problems and the end result was I had necrosis of the jaw and was told by my Dental surgeon to go off Prolia.He said Prolia on top of prednisone caused the problem. I am being sent to a specialist to determine what I can take for osteoporosis because my number from bone density indicate that I need something. I am now officially off prednisone for5 month so the saga continues.
So what are you going to do about the osteo? Keep us informed. The Necrosis sounds scary - just the NAME!!!
I'm sorry to hear of your problems. I do wonder whether those respondents who have had a favourable experience of Prolia have also had dental work while on the drug.What dental problems did you have?Is your jaw healing?
I had many dental appointment with no problem. Then I had a successful dental and crown work done. After I made many visits because the gum area was not healing. Many appointments later was sent to Periodontist she discovered the reason it wasn't healing was because of the necrosis. Very careful oral care and I was able to have its heal.
I've used Prolia for a few years with no side effects. I'm in the US and even with Medicare it costs me $300 per injection once every 6 months. I once tried Reclast (zeldronic acid) and I got terribly sick with flu-like symptoms which is a known side effect. I can't take pills because I have stomach problems. Before I started taking anything other than calcium I experienced several broken bones. In one year I broke six vertebrae, my sacrum and a rib. These bones broke after I had a dexa scan that said I only had osteopenia! Since I've been being treated with Prolia I have not had a single broken bone since. I think my last one was in 2019.
Thanks so much for this encouraging reply! Wow - fancy having all those fractures - my doctor said it concerns her to see so many unnecessary fractures when something like Prolia (or its stablemates) can be used. I was talking to a freind today who said he knew of a ballerina in her 70's who is a champion for Prolia. I am fairly sure I will go ahead........
I have similar PMR history to you but was not put on Prolia until I had managed to stop taking Prednisolone. It's definitely the way to go, I have no side effects and effectiveness is very good. I have managed to increase my bone density a little over the four years or so I have been having Prolia injections.
I was on Prolia for over 7 years. I had to stop because I needed dental treatment. I was not told to take an alternative so I had a few months without any protection. I was then (for an unrelated reason) ill and in hospital for 5 weeks, on a high dose of steroids (40mg daily). When I was discharged, I was in a great deal of pain. From an Xray of my spine it was discovered that I had 8 wedge fractures of my vertebrae. It was not until I was routinely measured that I discovered I had lost 5.5 inches in height! Some of this was good news, at least I had a reason for the pain. It took a while but the excruciating pain has now gone.
I have had no ill effects from the Prolia and strongly recommend that you at least give it a try.
By the way, there is also this:
"Zoledronic acid is given once a year as an intravenous (IV) infusion to treat osteoporosis."
Thank you! It sounds like you had quite an experience.... (not one you would want to repeat!) I used to have Aclasta infusons once a year so I am guessing Zoledronic acid is from that stable? It is confusing to have so many options but I do trust my lovely GP who thinks Prolia is the go.....
Aclasta is the brand name, zolendronic acid is the substance name and used for generic products
Thank you for clarifying Pro - I guessed that would be the case.
After 5 years on Prolia, I had the "rare thigh bone fracture" - standing by the sink one morning and my femur snapped (I had a lot of pain before it happened and was looking for an orthopedic surgeon but didn't get there fast enough). Went by ambulance and had a wonderful surgeon who put a rod in my femur - no problems since. Now taking Reclast once a year intravenously.
Wow! That sounds mega scary! I am so glad all is well now. Thanks for yours response.
Louisa, i hope you dont mind me asking, did you have the Prolia injection?
I don't mind at all! Yes I did. After research and my doctor saying she sees so many avoidable fractures, I thought it best I had a slight reaction for a couple of days but I now feel confident that my bones are safe. It's a GOOD feeling....
Thank you, im due a Dexa and i was borderline on one of the markings last time so not expecting the best news! Good to know you were ok on it. Thank you.
Doesn't work instantly though - even denosumab/Prolia isn;t a glue that suddenly prevents breaks.
Aha - so I should keep off ladders for a while? My brother, who also has PMR, fell off a ladder and broke his hip .........
By my arithmetic you are older than me - no business up a ladder IMHO!!! The ED won't cry if you don't visit them - the percentage of their patients who are over 75 is quite horrifying! (63% if you want to know!)
I was being a bit ironic! I have learned to let the experts do the jobs I used to do. I think one of the great things about being older is you know what you are good at and what you are not! I think this is harder for MEN - we have a handyman coming tomorrow to do jobs that my husband used to be able to do and it hurts his pride......
My late hubby was exactly the same, but it was when I was doing things he couldn’t [pre GCA days for me I hasten to add].
Agree with PMRpro-no ladders…. Biggest issue with older generation is falls- bad enough when feet are already on the ground -let alone meters above it!
I promise no ladders D. L. See my reply to Pro above.......
Prolia instead of Fosamax
Prednisone or prolia?
Prolia side effects
