Bone density showed severe osteoporosis. Beenon steroids since December 2017. Wondering if anyone has taken prolia and had any side effects. I haven’t started it yet. My bone density score was -3. Dr. Thinks he’s giving me a shot on Monday. I’m hesitant. Yes, I have PMR and having trouble getting off the steroids. Started at 15mg and now at 11 1/8. Yes, going so slow.
Thank you, Maggie
I’ve been getting the shot for three months and was very concerned of having a reaction , but all seems to be well. No reaction at all. I did have a serious reaction to the Fosamax several years ago but things have improve over the years maryanne
You mean you had your first shot 3 months ago? It is given once every 6 months.
I’m on the one call xgeva and I get the shot once a month. The generic name is denosumab. I didn’t have any reaction at all. I was very concern when I finally consented to taking it. 🤗
Haven't come across that version before - bit of a pain having so many injections!!
The prolia is one injection every 6 months. Still uncomfortable with it though.
Not too bad. I have to go to oncology once a month for another shot. They have been good about coordinating everything in that same visit and I live close to hospital.
I have them every 3 months (Bonviva). No adverse reactions.
That's ibandronic acid - different stuff.
Trust me! Thick as two short planks when it comes to medical/medicine things! 😟😂
Works though!!!!
Works?????
Improves your bone density! And I don't think there is the rebound effect when you stop so stopping is an option
I have stopped (5 months ago)! Will be having another dexa scan in June to see how things are.
I’m very concerned as Im Very sensitive to all meds, I either get the opposite effector reaction. Dr thinks he’s going to give me this shot on Monday but I need to know more. I have severe osteoporosis Nd hVE had a couple of fractures. My question to him, why didn’t he give me something 2 years ago as i had osteoporosis then? Yes, my mom had a severe reaction to fosomax too she had wegeners granulomatosis.....same family as PMR. Thank you for responding, 🤗 Maggie
Hi maggie, don't know about prolis but don't think you are going so slow. I started at 15 mg Prednisone in Jan 2019 (one month after you) and I am only at 9 mg after a flare and had to go back up on Prednisone (going slow helps prevent flares) So I think your tapering isn't particularly slow. Wishing you well.....
Thank you for response Lugigisim, I actually have to plug 1/4 mg in half as I try to get to 11 and still in pain. My biggest prob now is I’ve been told my bones are breaking due to -3 bone density scan and I’m concerned about going on these injections of proria
Great to know I’m not the only slow one.
All the best and journey on, Maggie
My bone density was -3.5 two years ago. After 18 months on Bonviva it was down to -2.3. Can’t be bad!
Hi Maggie,
I’ve had 3 Prolia injections now, (6 monthly) no side effects. T scores were the same as yours. Also on prednisone since June 2017, have tapered from 50mg to my current 1mg, so it didn’t cause any relapses with my PMR/GCA either. There really is not much choice when the osteoporosis is this bad to be honest, you can try to take the healthy and alternate medicine route but that is a long drawn out “fix” that won’t really fix it at all and you are at severe risk of becoming immobile or worse, if you suffer a fracture to your back or hips. I won’t tell you what my rheumatologist told me to get his point across, the risk factors and the repercussions, but believe me I didn’t like the alternatives to NOT taking Prolia. Just make sure you get a dental checkup first, as you can’t have any extractions or major dental work once you start. And be aware that you will be on Prolia or something else for life. I was originally told maximum of 3 years until members here on the forum enlightened me. When I asked my rheumatologist about it on my next appointment he admitted it was a life long commitment. Best of luck, I hope all goes well for you as it has for me...so far.
At least he keeps up to date!!!!
Hi Maggie, I'm having my fourth Prolia injection on the 7th May and my Rheumatologist does them himself and has such a soft touch I hardly feel them. No side effects yet other than the hospital charging an arm and a leg for the Prolia. Because of my propensity for fractures (nine so far) the three year duration has been increased to five years and likely to ten. It was interesting to hear it is now recommended for lifetime, at 71 I could be going on for another 30 years, heaven forbid. (Pred at 6 mg, diagnosed in 2014 starting on 60 mg and reducing half a mg each month, though last three months I've been stuck on 6 mg because of a toe complication thought to have been caused by G.C.A.).
Regards
Thank you so much for the reply and info. I’m still on the fence as it’s my pcp who’s doing this, I don’t have a rheumy. I’m also type 1 diabetic and am massive amounts of meds. I think that should be looked into too before just jabbing me with yet another Ned. I’m nervous can’t you tell? Thanks again
Maggie x
Did anyone advuse you to see your dentist before you have Prolia?
Hi, I am on Prolia every 6 months. Have had it twice since starting with no side effects. Was unable to take Fosamax.
Doc put me on Prolia a year ago - I had severe side effects after the first shot but second shot was fine. Won't know how much I've improved till I get a bone density test - hopefully this summer. Do your research and then decide. Good luck
May I ask what the side effects were?
Fever and shaking. Went to bed and slept for 10 hrs. Okay next day. Doc felt there was something else going on with me to cause that kind of reaction. Next shot was fine - no reaction at all. Going for my 3rd shot this month. Everyone reacts differently. Good luck
with this. Let me know how it goes.
Hi there, just to confirm what others have said, I have osteoporosis post PMR and steroids and have the Prolia injection every 6 months. Also taking daily calcium supplements, worth taking the more expensive variety derived from calcium citrate not calcium carbonate. Two years on I can honestly say it has been the right choice for me, my last bone density scan showed an improvement on my risk factor of 4% so well pleased. Goes without saying that exercise and diet are also crucial to improvement! Good luck with it all, Maureen
Well worth a Dexa Scan to see if Bisphosphontes are essential!
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