I told my GP I couldn't take Alendronic Acid because the side effects were too extreme.He now wants me to try Risedronic Acid. Has anyone tried this? Is it any better?
I suspect I'm going to be having a similar conversation with a GP next week, so I look forward to reading the replies to your post! My GP seems very gung-ho with medication whereas I don't like taking anything unless absolutely necessary, and only if the benefits outweigh the side-effects.
Hi Kate I take aledronic acid, I must say for about half an hour after taking I feel very sick. My rheaumy said not to worry when you come off predesolone you won’t have to take it. I asked how long was a piece of string he just smiled and said it was for my own benefit. What are your symtoms Kate? I have been taking it since March’17
Hi Margaret, I took the Alendronic Acid twice. The day I took it I seemed OK but the next day was terrible. I felt awful when I first woke up and when I stood up I nearly passed out. I was desperate to get to the bathroom (diarrhoea) and had to hang on to the walls to get there. I just wanted to lie down. This went on all day. If I sat still it would pass off but every time I stood up the fainting would start again.
I can't face going through that every week on top of everything else. I am really reluctant to even try the Risedronic Acid as the side effects sound pretty much the same.
I couldn't take Alendronic acid, either, but did fine on Calceos for my eight years on Pred. Don't know whether there is any way to discover which of us actually needs bone protection.
My reaction was breathing problems. Coughed and wheezed and I'm a lifelong non smoker who has never had a cough in her life.
I can't remember if you've told us. Why are you being prescribed an osteoporosis drug? Is it "just in case" or do you have osteoporosis?
No, I don't have osteoporosis. The rheumatologist suggested that my GP prescribe as a bone protection.
I think I should be OK on a calcium and vitamin D supplement. I am tempted to tell my GP the side effects were too much without actually trying it! It seems daft to put my self through that on a "just in case" basis. I might feel differently if I had osteoporosis.
Kate, have you had a bone density scan? I personally would not take any form of Bisphosphonate derivatives without a bone density scan. Stay positive, active and smile.☺️
Hi Michdonn, I asked my GP today if he would arrange for me to have a dexascan but he said it wouldn't be helpful as it couldn't predict whether or not I would lose bone density by taking pred!
GPs here have quite a bit of power. They stand between the patient and all the specialists, unless you can go privately or have private insurance.
I think it's a common experience to be prescribed " just in case" and not just bone protection. My recently diagnosed PMR sister was prescribed omeprazole for stomach protection. I got on just fine taking my Pred. with a big dollop of organic natural yoghurt.
Kate, at the risk of boring everyone with repetition, I was told by the surgeon that did my hip replacement five years ago after more than seven years on Pred. ( aged 81.... me, not the surgeon!) that I had "amazing bone density for ( my ) age " So obviously bone loss is not inevitable.
Thanks for this Betty. It is very reassuring.
Hi I have been taking risedronate for three years( just about to stop it) and I have no problems whatsoever. Unfortunately a dexa scan showed my hips were osteoporotic which was why I was prescribed it. I would not have taken it otherwise.
Thanks Arlene. I had a dexa scan in 2003 and my bones were fine but that was some time ago. It is good to know you took the drug without any problems. Did it work? Has it replaced the bone loss?
Kate, I understand that. My primary care physician (PCP) is my neurologist, when I first went to her, she asked if I had Bone Density Scan. I had not so then got one as a base line. When starting on Prednisone, I had another scan, plus a drip, for protection. I waiting the results of my last scan, must be okay, I have not received a call. I will see her before ski season. So her feel is it is a way to monitor my bones, to me relaxes my mind and I can go out and act like a kid again! Think positive with a smile. ☺️
Yes it gives you peace of mind. \it seems a very sensible approach. Have fun.
Hi, I take Ibandronic acid once a month, which I preferred to a weekly dose of other bio sulphates . I take it because my dexa scan showed slight osteoporosis in the hip which Pred might make worse. My GP said I could come off it when my Pred was much reduced. I wouldn’t take it simply as a pre-emptive. I don’t take or need omeprazole either, yoghurt working so far. It’s all a question of balances!
I know it's common practice that's why I asked. My dr. wanted me on AA but I insisted on the DXA scan first and did a lot of research and refused the drugs.
Have you had a dexascan? Do you need them?
Of course it can't predict whether you will lose bone density but if you have a baseline reading you can then TELL if it is reducing your bone density when you have a follow-up one. Bisphosphonates should not be used for patients with normal bone density - and since they have some nasty side effects after longterm use it makes a lot more sense to only use them if you must: after a couple of years there is evidence that the bone formed has fine cracks and is at greater risk of developing spontaneous fracture, I don't object to their use per se, I DO object to their use "just in case" - that was part of the highly successful marketing campaign when they were first launched onto the market. Now, after more than 10 years widespread use the hens are coming home to roost. They are not "perfectly safe for long term use" and DO have some serious downsides.
I had been on pred for over 7 years at my last dexascan, I have had 3. The first was done in the UK to get a baseline - as is recommended in the BSR guidelines. Then I took calcium and vit D supplements and my bone density had not changed 4 years later, Another 3 years later it has fallen slightly but is still well within acceptable range.