Please does anyone know a private Rheumatologist in Cornwall or Devon who I would be able to go and discus my osteoporosis with? Thank you.
I have severe osteoporosis for 7+ years and despite being on alendronic acid 70mg once weekly for 7 years , my osteoporosis has worsened such that my advice a few months ago was:
‘Continue on alendronic acid though it is very likely that you will have a significant osteoporotic fracture in the next ten years ‘
This seems very disappointing to me as
1.-I have done everything I can to prevent further deterioration of my osteoporosis.
2- non smoker
3.- very good diet with calcium foods and supplements and a healthy weight
4.-I am active such that I take part in marathons etc but I only walk now because I am fearful of falling and breaking more bones (both heads of radius fractures R in 2008, L in 2018 and 2021)… whilst on alendronate)
6.-I am trying to contribute to the world by doing research in to Restless Legs Syndrome , RLS, and have 2 recent publications.
7.-I am keen to continue voluntary work with caring for dogs and dog walking. This may well be impossible if I get fractures.
8.-regular periods until easy menopause at 53 years old.
9.-I have a bad family history of osteoporosis in my maternal side of the family and my older sister.
10.-the costs of if I get hip or vertebral #
(The research, which was led by the University of Bristol and funded by the charity Versus Arthritis, found that people spent an average of 32 days in hospital in the year following their hip fracture, leading to an average cost of £14,642 per patient.12 Jul 2023)
11.-I have read about the various options for treatment and have been advised that the best one for me would be teriparatide
-teriparatide for 2 years and then to to risendronate for ? a few years..RLS nearly 40 years…,
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My other main problem is Restless Legs Syndrome RLS, which has been torture but is now fairly well under control with intravenous iron infusions periodically.
Strong family history, mum had it and 3 of my 4 children do.
Fighting for empathy, compassion and no humiliation from doctors for years . Plus that docs should do homework to find out what is known about it and what can be done to help. More research is required…..
Written by
Kakally
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I think you would be better off visiting the Royal Osteoporosis Society’s website. theros.org.uk. You could consider trying wearing a weight jacket to build up your bones. How long have you been taking Alendronic Acid? It is recommended at five years you should have a rest from it.
Thank you for the signposting to the Royal Osteoporosis Society .Yes I know about the 5 year thing and I had a 9 month holiday but have been instructed by a message from a nameless local expert… following my last Dexa scan to go on it again for another 5 years, Thst is partly why I want to discuss other options such as denosumab or teriparatide etc. It is frustrating not to be able to even speak or discuss with a human… my GP is nice but not an expert , nor can he prescribe anything other than that which was recommended.
It seems VERY strange to me that if your osteoporosis has worsened over the last 7 years whilst on AA that they think that continuing it will achieve a different result. I would certainly insist on another opinion because I would have thought that denosumab would be far more appropriate. I was going to say your GP should be able to help but these days that seems more hope than reality!
My GP is lovely but I will have to wait for 1+ years to actually see someone on the nhs ! By that time I might well have suffered an osteoporotic fracture. Just for once I am keen to go privately to hurry things up.
Thank you . I tried everything under the sun before obtaining the I-v iron for my RLS My RLS has been a nightmare, very severe , day and night, arms and legs. But I am relatively sorted since intravenous iron infusions.
Its my severe osteoporosis that is my big concern now.
Thought you would have done, I’ve suffered too, but it’s always gone away again, & no idea what brings it on…or stops it! My husband tried a lot of things but nothing worked. Then the socks! So simple, but effective!
Have you tried to find a local Osteoporosis Society group where you live. I know Devon and Cornwall such a large area but the charity runs local groups. The local group will know all the experts in the area they serve. It's probably worth hunting them down via the National website. I used to do exercises classes for the Essex local group when I was working. I found them to be very knowledgeable. I am hoping you find a group where you live. I originate from the Bideford area of Devon but I've lived in Essex now for over 40 years! Go back from time to time but not many family left now.Hope you find the help you are looking for x
Hi Kakally. I've been on Pred for 2 years and was unable to take AA due to stomach issues. Bone density in Oct. 2022 was at osteopenic level. Rheumy said she said osteoporosis, but IF she did, nothing was done. Nothing was given me. This year (Oct 2023) BDX approx. the same, BUT since June I've had 9 maybe 10 vertebral fractures. I am no longer able to tolerate the pain of lying on the MRI table. Too little too late, I did have a Zolendronic Acid infusion in October 2023. Rheumy is not, nor has ever been, on the ball. I just saw an osteoporosis specialist here in Halifax, NS who says the infusion will probably not kick in for another 2 to 3 months, but it was a good choice and that I will be babying my back for 2024. If you do decide on infusion, make sure you go to a dentist beforehand. I walk with a walker, still able to get my meals, small things. Will be starting soon with physio therapy with an Osteoporosis PT. Fractures occur randomly and it's the muscular pain from back to front which is worst. I'm told a back brace would make the pain worse. Received a letter from our Chronic Pain Clinic. I'm triaged on a 2-year wait list. Take very good care of yourself.
I’m so sorry to hear of your horrible experiences with vertebral fractures and seemingly being left rather long before being given the Zolendranate infusion . You have really had a hard time. I really hope it kicks in soon and you feel better and more mobile.
Thank you also for the dental advice . I will definitely be careful to check that out.
It does seem to be a rather relaxed attitude to the majority of us patients, whether they care enough about us as individuals.
That’s what has worried me. I just got a nameless message after my recent dexa scan telling me that it’s worse than my last one, and now I am high risk of a fracture but just carry on taking the same medication (alendronic acid) which is obviously not working well for me. And there is no human to discuss this with except my lovely gp who is no expert and cannot explain why this is the right treatment for me!! Very frustrating.
The Royal Osteoporosis Society specialist nurse was absolutely wonderful on the phone (a kind person on this forum signposted me to them) and I now have a sort of plan of action going forwards
Scroll to the top of the thread and at the top right corner is a blue box saying Write - tap on that and a page comes up to write a new post, The top box is for a title - something like "Great help from ROS Helpline (Royal Osteoporosis Society) "
Then write your story in the lower of the two boxes, just like replying to someone. And click on the blue box at the bottom right that says Post. Job done!
I can’t seem to manage this. I’m very happy if you want to quote me and my name , and what I have said to let people know . I know this sounds useless and I am with computers xxx
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