I have had PMR for 7years and am currently on 4mg Prednisolone. Really struggle to lower the dose and get recurring PMR symptoms. Six weeks ago I had my first annual Zolendronic Acid infusion as advised by my Rheumatolgy consultant and for the last month I have had excruciating ‘shout out loud’ sacroiliac hip pain, constant dizziness, sweating in the early morning, as well as the usual fatigue.
Interested to know other people’s experience of this treatment.
Thank you, Linnetbird
Had you had a dexascan first to show you needed it? Seems a bit late in the day to start it!
I had an infusion following a DEXA scan a year after a humerus fracture in March 22. This was three months before I was diagnosed with GCA. That night I had terrible shakes / sweats and felt grim for a couple of days, weak flu like symptoms. They then passed. Dreading the next one whenever that may be. Feel rubbish enough with GCA on some days let alone adding more grimness. Some people have no reaction to the infusion. My chiropodist had a similar reaction to me for one day.
So far I have had two infusions out of a course of three, spread over three years. Happy to report no adverse reaction whatsoever on either occasion. I do hope your next one goes better. Best wishes.
Have you been diagnosed with osteoporosis?
Gosh that’s late for AA. Was your DEXA scan showing osteoporosis? Osteopenia can be fixed with diet and exercise. I chickened out due to the gruesome side effects and was backed up by 2 good DEXA and one showing osteopenia.
Mine did
I have had 2 infusions now with no side effects atall. I was dreading having them & had put it off for far too long until eventually the osteoporosis consultant at the BRI almost insisted as I have severe osteoporosis with high fracture risk. The nurse who did the infusion suggested I drank a lot of water so I was very hydrated which mitigates the side effects.
It is horrid though to have another thing to cope with when you are already suffering.
I wouldn’t try other meds if 4 mg. Of prednisone is working …5 mg. Daily is virtually side effect free ..I’m back to 15 mg. Prednisone ( diagnosis PMR 16 months ago ) this time I am taking 5 mg. Every 8 hours ( one month now as i was down to 10 mg once a day when flaring began ) . I will never take one dose a day of prednisone again !
have been on prednisolone for 2 years and like yourself on 4 mg as when cut down pain returned . I’ve never been offered Zolendronic Acid . I’ve an app. With my rheumatologist tomorrow , will jet you know if there’s any change , hope you keep well x
I have had 3 cycles of zolendronic acid. I felt rubbish for a couple of days after the first but only tired after the others, and that might be because of the long journey to hospital. However I fractured another vertebra midway through the third.
I am descrbed as having severe osteoporosis and am having a year of romosozumab (Evenity). This involves 2 self administered subcutaneous injections once a month. So far I have done it twice and felt shattered for 2 days after each but no other obvious effects. I was referred for a dexa early last year after the last fracture and now have an appointment at the end of this month. Rheumatolgy consultant thought it best to go ahead anyway as it takes a while to organise and it is now a year and 4 months since the last zoledronate.
So I don't know if zoledronate works or not, I went quite a time without a fracture after starting it, and I think I may have lifted something heavy in a fit of gardening enthusiasm to cause the last one.
Dear All, (I hope this is the right way to respond.) Thank you all so much for your comments and help. I had a Dexascan and I think the idea of the infusion was preventative. After the initial flu-like symptoms, knowing long term side effects didn’t seem to be a major issue for people is helpful, and helps me consider what else might be going on, and what to next discuss with GP. Thanks all for being so supportive.
Linnetbird xx
Zoledronic Acid ~Infusion
Alendronic Acid
Alendronic acid
Aclasta Infusion
Zoledronate Infusion
