I've been on Prednisolone for PMR since October 2022, starting on 15mg and now down to 4.5. Reumatologist has told my GP I should be on a bisphosphonate and she's just prescribed Alendronic Acid.
Reading the patient leaflet, the side-effects sound pretty grim. I'm going on a river cruise at the end of the month and don't want to feel lousy then. I know we're all different, but wondered if generally speaking any side-effects kick in the same day for a day, or do they lull us into a false sense of security then sneak up after a while.
(When I started chemo several years ago I was told any side-effects wouldn't start for about a fortnight from starting treatment. And a fortnight to the day they burst into my life. And stayed with me for exactly a fortnight after finishing treatment.)
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Hercules307
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Have you had a bone density scan to see if you need the Alendronic Acid.
I stopped taking it after my doctor rang to say not to take any more until I had been to the dentist and had any work done. I read up about it and decided not to take it. A year later my bone density showed very mild osteopenia and the consultant said to just continue with the d3/calcium tablets and carry on walking. My next scan showed my bone density to be normal. I added in k2 as that sends the calcium to the bones and not the arteries.
Thanks for the link. I've not been prescribed Calcium but since diagnosis I've taken a Holland & Barrett 600mg Calcium + Vit.D Thinking I should wait for the "urgent" rheumy referral to come through and ask them about getting a scan before starting any new meds.
I'd want a dexascan first. And before you start the tablets, get a dental appointment and make sure everything is well there and there is nothing invasive that needs to be done first. , You should also get a hygienist appointment and then be scrupulous about oral hygiene ongoing.
So go on your holiday first and worry about the AA when you get back. At this stage a few weeks one way or t'other won't matter.
My GP put me on Alendronic Acid at time of diagnosis, but said I didn’t need to start straightaway.
This was before I knew about getting a dexa scan first. Not too bad side effects, but an absolute pain to take with a glass of water, then being upright for a while, and then being told not to eat for a half hour after..
As I didn’t feel I needed them for my bones ( just my own feeling), I gave them up when I got to 7mg, with my GP’s agreement.
That was nine years ago, and I’ve had no problems at all.
Royal Osteoporosis Society has a good video on side effects of osteo drugs which you should find in FAQs. I was terrified at the idea of taking AA but 6 months into taking Pred I asked for a Dexa scan and found I was at high end of osteopenia so agreed to take it. Have had no issues and the dentist is relaxed about it (I have regular check ups and hygienist every 3-4 months). In fact the getting up early once a week and staying upright means I get ironing or other chores (cleaning windows etc) done more regularly! 30 mins passes quickly...
I've taken AA for 4.5 years. My Dexa Scan showed osteopenia which is what put me on AA along with PMR. I also took calcium and vitamin D3 the whole time. My next Dexa Scan 2.5 years later showed I no longer had osteopenia and showed such great improvement that I was taken off of AA . One should not take AA for longer than 5 years anyway, but I did not have to take any sort of replacement. It certainly was worth it to me. I never had any side effects from AA other than it was a pain to remember to take it once a week and be up and active before eating in the morning.
I did not want any more drug side effects from prescription meds for osteoporosis, so I am taking a bone building supplement, ( Vit D3, VitK, Calcium, Magnesium and manganese there are many available) collagen and do appropriate weight-bearing exercises. I feel confident that my next bone scan will show an improvement and I will possibly be spared some nasty side effects. I am not convinced that the prescription meds result in a good "quality,"( ie flexible as opposed to brittle) of bone, although one's bone density will go up. I read 5 library books about osteoporosis by experts (who were not selling anything!) before I made my decision to skip the pharmaceuticals. Educate yourself before making a decision.
Hi, I had a DEXA scannlast week which showed up "osteoporosis". My scores were all under -2.5. The radiologists comments were the risk om sustaining a fracture inbthe next 10 yrs was 1.2%. The DR put me on Fosamax which is AA. After researching it I have decided not to take it. I don't think 1.2% significant really to outweigh the risks.
I;m surprised that if you already have osteoporosis AND are on pred they achieved a result of 1.2% on a FRAX score! Wonder if someone pressed the wrong button!!
I just rechecked my result by radiologist. It definitely says 1.2% hip fracture result from FRAX score for next 10 years. My DR won't be happy at all, haven't told him I didn't pick up script. I spoke to pharmacist and told him I wasn't happy to take it and he kept the pills as it's govt funded here and they can use it for someone else. I understand it's sposed to build up bone density etc and that I have osteoporosis quite badly according to scores. I'll take the Vit D and calcium. It still doesn't explain the rest of my pains etc as osteoporosis isn't "sore" in itself. That is arthritis and bursitis and Fosamax won't help there.
No, but it may reduce the risk of a spinal compression fracture and they can be very painful. But I really am suspicious about that 1.2% hip fracture risk.
Agree on the hip fracture risk… mine was 5.9% even though scores were normal. But guess early hysterectomy with no HRT, Pred high doses [albeit with AA] & mother’s hip fracture factored in, plus 20 years older than Monkey321
The report says as follows: the average bone mineral density of the lumbar spine ftom L2-L4 is 0.770g/Sq cm which is 2.8 standard deviations below the mean for a young normal adult population and 2.2 standard deviations below the mean for an age and sex matched population. The L4 has the lowest individual T score of -3.6
The bone mineral density of the left femoral neck is 0.554g/Sq cm which is 2.7 standard deviations below the mean for a young normal adult population and 2.0 standard deviation below the mean for an age and sex matched population. The risk of hip fracture calculated by the FRAX tool is 1.2% in the next ten years.
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