I've looked through the archives and found a number of posts from members who decided against accepting intravenous bisphosphonates. In my case I took Alendronic Acid for a month (reluctantly) after being diagnosed with both GCA and PMR in late July. I stopped because of the acid reflux and oesophagal soreness that resulted. After a DEXA scan, I was told I had osteoporosis and my rheumy offered me the intravenous version instead, which I accepted with some relief. I had an appointment at the Royal Free in early December. However in the meantime I read a number of very disquieting articles and, after weighing up the pros and cons decided that I certainly didn't want to take such risks for so little benefit. I'm determined to manage my bone health through lifestyle adjustments - diet, exercise and exposure to sunlight - plus calcium, magnesium and vitamin D supplements. It concerns me that this very dubious treatment is offered routinely. I'm seeing my rheumy in December a couple of days after the cancelled appointment. I hope she'll respect my decision and won't try to persuade me to change my mind.
Intravenous bisphosphonates: I've looked through... - PMRGCAuk
Intravenous bisphosphonates
You were "told you have osteoporosis"? Do you have your t-scores? Call me cynical - but I only believe the numbers!
To be fair - it is fairly recently that the drugs have become "dubious" although a lot of us have been sceptical for a long time. But what do we know?
No, I don't know the actual t-score. I'm going to ask for it when I go for my rheumy appointment. Then maybe I can have a routine DEXA scan after 6 months or a year and see what, if any, progress I make. I'm sure you're right as you've been studying these matters much longer than I have, but some of the reports raising concerns that I've read are 10 or 15 years old.
Oh yes - not saying the concerns haven't been around but the real evidence is recent.
I doubt you will get a routine NHS dexascan inside at the very least a year - the guidelines are at least 2 years becauase the changes are fairly slow normally and it keeps the queues down...
I fail to understand the pressure we can be put under to accept this treatment too. I was told, before a DEXA scan, that " you don't want to end up in a wheelchair do you?"
My DEXA scan subsequently showed that I had the bone density of a 30 year old. My Rheumatologist was quite happy for me to not have Alendronic Acid. It was the GP who was so keen. I can only think that the Pharmacological companies did a very good selling job to Primary Care providers.
I have also read disquieting reports about these drugs and took the same decision as you before the scan results. I would be reluctant to take them under any circumstances. I take Calcium and vit D supplements and Magnesium.I have a Calcium rich diet and I take exercise in the natural daylight.
Stick to your guns! They are not the wonder drug that was first supposed. The side effects are horrendous and it seems that in some cases they are doing more harm than good.
Thank you for the support. I tend to have a natural respect for doctors and their professionalism, and I was so grateful to my rheumy when she diagnosed me with genuine conditions (for some reason, although I was crippled, I thought it might all be in my mind) that it seems almost like sacrilege to disagree with her. But I have the support of my children and friends, as well as you, so will stick to my guns.
" I can only think that the Pharmacological companies did a very good selling job to Primary Care providers"
Oh yes SJ - I could tell you that story but it would take a while. Sometime maybe...
Yes, Sheffieldjane. It seems to be a bit like" Statins For All" (I'm mimicking a certain supermarket here, with their Christmas advert "Lobster for All!") So, Bisphosphonates for All who are treated with corticosteroids, "to prevent osteoporosis." It may suit some people and it would be interesting to hear from forum members if anybody does take bisphosphonates long term successfully and what their experience of it is.
There are people who do take them and are fine. So far that is - they have only been in use for about 15-20 years,
Fosamax was first licensed in 1995, previously similar drugs had been used successfully for Paget's disease but the numbers were not such that problems were seen even over 50 years of use. In 2008 the patent cover for Fosamax expired - and the free-for-all with cheap generics started. So we are at 10 years of really widespread use - and the chickens are just starting to come home to roost I suspect.
No drug shows its real colours in clinical studies - the numbers simply are not big enough. Once the generic stage is reached it is a different matter.
I should add that they do successfully lead to increased bone density - but that may not be the same as reduced fracture risk. That certainly is beginning to appear to be the case for longer term use. They may stop one form of fracture only to increase the risk of others.
I am reading Bad Pharma at the moment which is a bit of an eye opener.
Have you read Overdo$ed America?
No, another one I'd never heard of, but I'll put it on my to-read list. Thank you.
I wonder if I have got room to find something else infuriating? Harvey and Donald are taking up a lot of space. Then there's Brexit .........
But think of something pleasant. How about Prince Harry and his beautiful biracial fiancee?
Do you know Heron that is cheering. Ever since I saw that poor little boy walking behind his mother's coffin in total shock, I have wished him love and happiness. Meghan seems just the woman to give him that. It is especially cheering that she's biracial. It flies in the face of all the hateful stuff we hear these days.
I'm a real newby to all of this. I hadn't heard of Bad Pharma, but I've just checked my local council's website and there are two copies in the libraries so I've reserved one.
Hope you enjoy Bad Pharma.
To build bone, there are two kind of bone cells working.
One removing the old cells, the other building new bone cells. The bisphosphonates preventing removing the old cells, and the result is "old" bone. Impaired blood circulation
The density test has no way to tell the quality of the bone. Yes, there is more dence looking picture, but without vitality, and durability and flexibility.
The old bone can not heal properly, when teeth extracted, or after injury, and causing bone necrosis.
I would stay away from this bisphosphonates, and take VitD, Ca, Magnasium. K2 is important, without K2, the Calcium does not become part of the bone, and can deposit in kidneys, arteries,etc.
Has to take the whole team D vitamin, Calcium, Magnesium and K2.
Also weight barring exercise, walking, lifting light weights, plus healthy diet.
My choice of treatment, try everything with the least side effects.
I really like this. I am being pushed to take Fosomax. my t number is -2.6 (USA don't know if it is the same in UK) and I am active and have good balance...got hit by a car on my bike went over the hood into the street and did NOT break a bone. Just ordered the Vit K2 to add to the rest of the calcium magnesium and Vit D. any other suggestions? thanks
even it is hurts, keep moving.
Find a good neturopath., who also has a medical degree.
With PMR we need Prednison, but the rest is better advised by an alternative medicine doctor.I think your bone is healthy, if it did not fracture after your accident
Panni,
How much vit K2 do you take? Have you had any side effects?
The best way to take, to find a reliable manufacturers supplement.AOR in Canada has a "bone basics" supplement, has all the supplements the bone needs in a capsule.
Important the balance among the vitamin D, Calcium and K2, This supplement has1000IU vitD3, Magnesium 420mg, Calcium 1000mg, K2 120mcg and several other ingredients. per 6 capsules. I take 3 a day.
Thank you so much for this. I'm in the process of deciding which supplements to take and your advice is invaluable.
My endocrinologist and Go had been talking fisamax for years and I pushed back. Then came PMR and Pred. I still pushed back, but when a consultant I went to, one of the original researchers on Fosamax, said he would not rx Fosamax despite my osteoporosis, because my bones had been stable for several years....BUT for the Pred. His reasoning and data convinced me. As soon as I get down to Five mg. I'm done. Just had a new scan. Hip and forearm are stable. Spine is up 10%! LoL. I replied that I guess my scoliosis or arthritis are getting worse. 10% is impossible. How she could have reported it with a straight face....., I can't imagine.
If I thought it was important in the big picture , I guess I'd have to ask to have a radiologist compare the two scans to see if it is possible to explain the finding.
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