Hello! I'm looking for some reassurance and advice as I feel rather bewildered by the advice from my rheumatologist.
I was diagnosed with osteoporosis in 2016 following a DEXA scan, and my GP prescribed Risedronate tablets. I had a second DEXA scan in 2018 which showed no improvement, so I continued to take the tablets as instructed.
In 2021 I had a further DEXA scan, which again showed no improvement but my GP advised me to continue taking Risedronate. When I questioned whether this was actually helping me, they referred me to a rheumatologist, who told me that my P1NP levels indicated that the Risedronate was not actually effective. I was therefore advised to have a Zoledronate infusion, which I had in June 2022.
Following the infusion I had a blood test, but this did not test for P1NP. Apparently this will not be tested until I have had three infusions.
I'm not sure how anyone can judge whether the Zoledronate is effective until I have had three infusions. I feel that I have already wasted five years taking Risedronate which was ineffective, and could potentially waste a further three years having useless Zoledronate infusions.
Should I ask for a further blood test? Can I have any tests done privately to determine whether the Zoledronate is effective?
If Zoledronate isn't working then what are the alternative treatments?
I should mention that I have mobility issues which limit the amount of exercise I can do, but I have a good diet (I am naturally very thin) and take Calcium, Vitamin D and Vitamin K2
Thank you in advance for any advice.
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ScrumpyPig
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Hi, Im sorry I can't answer your question precisely but can tell you that I had my first infusion last November as I have osteoporosis and experienced several spinal fractures. I was told that infusions are now given every 18 months as it has been proven to be equally effective as every 12 months. I was also told it would take 6 months for the Zolendronic Acid to be fully working but I wasn't offered any tests or further scans at this time. My advice to you would to give the ROS advice line a call on 0808 800 0035 or email nurses@therose.org.uk. You will find them very helpful and extremely knowledgeable. They have recently moved in to the centre of Bath from the village of Camerton. It might be worth joining as they will send you out a book, regular newsletters and leaflets on absolutely everything to do with osteoporosis. I sincerely hope you get the information you need, good luck
Hi I have had 3 infusions of Zoledronic Acid. Last one last year. See rheumatologist in October. One thing I will add is have you had blood tests for hyperparathyroid levels. This is very important. If you have hyperparathyroidism , it causes calcium to be raised in your blood, instead of being in your bones. Many more people on here have much for information about this, than I have. Just wanted to make you aware.
I echo the last reply. If you suffer from hyperparathyroidism no treatment will help until it is corrected surgically. Some GPs seem unaware of this condition and although it should be the ‘go to’ test when osteoporosis is diagnosed it isn’t. Mine was only noticed by an astute GP.
Have you looked at managing your osteoporosis without medication and with supplements and exercise - many of us on this forum do that with success. Good luck.
Hello. I should also like to advise you to have a test (simple blood test) for hyperparathyroidism. I did my own research, because my GP had never heard about the link between that and osteoporosis. I would also say, there is absolutely no connection between parathyroid and thyroid.Good luck. Stay safe ,
My endocrinologist never tested my P1NP. He prescribed alendronate (oral bisphosphonate) which I took for 1.5 years and then I stopped taking it due to digest tract issues. My DEXA scan showed little to no change after my having taken alendronate. My endocrinologist then recommend zoledronic acid and I had my 1st infusion in November 2021. In the US, if you are being treated for osteoporosis, you can get annual DEXA scans. I could have had one this July, but I am waiting until late November 2022, so the scan will be done 1 year after my 1st zoledronic acid infusion. Under no circumstances, would I/will I have a 2nd zoledronic acid infusion w/o proof that it is working, and if I were you I would demand the same. It’s pointless, and potentially detrimental, to receive ineffective medical treatments.
Thank you for your helpful reply. It is good to know that someone else agrees that I shouldn't just automatically have a second zoledronic acid infusion without any indication that it is working. Best wishes.
How depressing for you to have taken a drug for all that time and then discover after all that time that it was ineffective. I hope you didn’t have any or at least not too many side effects or worse still more fractures while that was going on.
Did your doctors have any explanation as to why the drug didn’t work for you?
Thank you! Fortunately I haven't had any side effects or fractures, although I have had a couple of falls.No explanation was given as to why Risedronate didn't work but I was given the impression that sometimes it isn't effective, and Zoledronic Acid is given instead. Best wishes.
Hi @ScrumpyPig I had my second infusion in April and I can honestly say the improvement to my back is better than I expected. On my first infusion I wasn't convinced it was very effective particularly as it was only six months after my spinal collapse and I had pain with most movements, particularly trying to stand upright.
I have realised that after losing several inches in height, have kyphosis and spondylosis that that is just not going to happen. This year, however, not only have I stood a little straighter, (with a bit of effort) I have regained about half an inch! It doesn't seem much but it makes my BMI score a little better. : )
There are moments when I know I have done too much or been too ambitious, mostly with a pile of ironing, and I continue to have spasms at my lower ribs which is nothing to do with the infusion.
I still walk with a frame although I sometimes have the confidence to go without and touch the furniture instead, usually in the bedrooms where I could fall on the bed. : )
The fear of more fractures is still with me, and I suspect many of us have the same fear, but my confidence in the benefits of the zolendronic infusion has grown.
I can only give you my personal experience and it does seem the second infusion has had the best effect for me.
Apart from Adcal I had been given no other preventative medication before my collapse so I could not comment on other treatments, but taking your medication for three years without improvement must be so demoralising, I really feel for you.
I too have mobility issues with a need for a total hip replacement, which cannot be done until my back is stronger to cope with the physio.
Good luck, it is not an overnight cure, you will find that you will gradually do things which you could not do before and then suddenly realise you did it!
It seems they really don’t know much about bones. Five years on a useless drug that can actually damage the bones when you come off it seems terrible medical management. Have you ever broken bones or do you know the scores that are informing your treatment? Sorry you have been so poorly managed.
I was very cross at the way I was treated. Fortunately I haven't broken any bones, but I really need to know whether this treatment is effective so I can decide how to proceed. Best wishes
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