Alendronic acid: Hi there! Is anyone on, or been on... - PMRGCAuk

PMRGCAuk

20,119 members37,699 posts

Alendronic acid

Carrollee profile image
20 Replies

Hi there! Is anyone on, or been on, alendronic acid? Have PMR newly diagnosed, on 15mgs for four weeks ( just two weeks in) then down to 12.5 for four weeks etc. Was yesterday recommended to take alendronic acid and omeprazole by doc but not keen on sound of side effects. Thanks for listening it's all new to me but grateful for advice etc.

Written by
Carrollee profile image
Carrollee
To view profiles and participate in discussions please or .
Read more about...
20 Replies
piglette profile image
piglette

I had Dexa scan and it was decided that my results were good enough not to have AA. Have you had a Dexa scan?

Carrollee profile image
Carrollee in reply to piglette

Hi piglette

No scan yet just a concerned doc who wants to make sure everything covered. I did suggest a scan he didn't say yes or no, but so little time on apptments these days I think I shall hold off and go back. Ta muchly cc

piglette profile image
piglette in reply to Carrollee

It did take a while for me to get a scan, but the form I filled in at the GP's surgery did actually have PMR mentioned as one of the items that had priority. Amazing really as you never hear about PMR otherwise! I suppose my feeling is why take Alendronic Acid if you do not need it, as it does have side effects like every other tablet seems to! Are you taking Methotrexate too?

PMRpro profile image
PMRproAmbassador

I wouldn't take it until AFTER a DEXA - I have been on pred for over 5 years. The DEXA done 3+ years into pred, most of the time at over 10mg/day was no different from the baseline one 3 months into pred. I have taken only calcium and vit D. The BSR guidelines (which you can find on this site pmr-gca-northeast.org.uk ) say that for under 65s that is the baseline bone protection, a DEXA should be done and only if required should AA be added to the mix.

Omeprazole is supposed to protect your stomach from the pred - it on its own can cause osteoporosis when used long term. Some people get horrid side effects and many people on the forums don't take it - I never did and I'm fine! Lots of people swear by bio-yoghurt to line their stomachs and it seems to work. Ranitidine does the same as omeprazole with fewer side effects, it's just it is older and not marketed so aggressively...

Carrollee profile image
Carrollee in reply to PMRpro

Ta PMRpro

Not taking anything else from doc apart from 15mgs pred. I take a strong probiotic with my breakfast along with pred. I do take vit c, garlic and omega 3, have done for years. Have adjusted my diet to try and loose weight while doing this, so here's hoping. Have M.E and plantar fasciitis so was ignoring symptoms and blaming it on those until life became impossible!! Now two weeks in feel brill apart from needing to catch up on hundreds of hours lost sleep!! Should be able to get out and walk soon and build up bones. All good so far. Just hoping I don't have/get GCA have been warned to be aware! Ta everyone. CC

piglette profile image
piglette in reply to Carrollee

Do you take vit D and calcium? I get mine on prescription to counteract the pred side effects and have no side effects that I am aware of.

Runrig01 profile image
Runrig01

I had a Dexs scan, which I organiaed myself as Eheumy felt as I was 46, I should have no problem. My scan showed I have osteopenia verging close to osteoporosis. I am lactose intolerant so eat little dairy. I was put on AA that was 2 yr ago. Had repeat scan recently which showed a 3% Improvement since baseline. I did have a stress fracture of the fibula 1yr ago, and was informed either the Peed or AA could have contributed. I still take it, and have no side effects. I would insist on a scan to help you make a decision. Good luck

Carrollee profile image
Carrollee in reply to Runrig01

Thanks appreciate comments. Will have a blood test after three weeks on 12.5 (5wks time) and go back for a chat. Have a good evening. Bye cc

pollyg263 profile image
pollyg263

I was given it but my dentist wasn't very happy says it causes probs with jaw bone and it will be very hard to have someone do any orthodontist work while taking it and a long time after. I also had a few side effects whilst taking it. I took it for 3 month then stopped, but as others have said dexascane will determine weather its worth while or not.

Charlie1boy profile image
Charlie1boy

Hi! I faced a similar dilemma earlier this year, and got similar replies on this forum. In the end I challenged my GP about taking AA.

She said that they know steroids can damage bones, and that, subject to having no side effects, I should take them till I got down to 7.5mg of preds. Then I could stop.

I have experienced no side effects. I'm sure that, as PMRpro has said, I am taking them "just in case", but so be it. Hopefully it will not be for too long.

Good luck!

Parijm profile image
Parijm in reply to Charlie1boy

Dr prescribed AA 70mg weeklyat same time I was put on Pred 30mg daily, no bone scan to date and am 62 yrs. Told to come off AA when I got down to 5 mg Pred, which looked to be in my 2nd yr of treatment. However now back at 10mg and I suspect 5mg will be achieved in distant future, not as first anticipated. I have mentioned having bone scan to Dr on each visit and to Rheumotologist recently. I really don't want to take medication if I don't need to and It appears from posts that not everyone is taking AA when put on Pred?

Celtic profile image
CelticPMRGCAuk volunteer in reply to Parijm

Parijim, I was never prescribed any bone protection at all in spite of a 40mg steroid starting dose. I was refused a DEXA scan so arranged one privately to get a base reading at the outset. All was well, and after 6.5 years on steroids, my repeat scans only showed the tiniest reduction in density. I wasn't even prescribed the usual calcium supplement usually handed out at diagnosis. I came off steroids approaching 3 years ago now and the latest scan has actually shown an improvement.

As your goalposts have moved due to an increase in steroid dose, you need to be aware that AA must not be taken for more than five years without a break.

Jackoh profile image
Jackoh

After reading lots of advice on this forum I stopped taking AA. I was going to explain this to my GP, but was waiting for the "right moment " as we have had a few"discussions " about me wanting to take the dosage slower and requesting 1mg tablets in order to do this. 1mg tablets then agreed by GP. I am going to ask for a dexascan( again found out about this on this website,was never mentioned by GP) and have also had a vit D test done( again not mentioned by GP but read about here)

I am so pleased I didn't take AA at this point anyway as I have just had a tooth extracted and that would have really concerned me if I'd been on AA.

Dentist did contact my GP, unknown to me, until I got there yesterday and said He told her that I wasn't on AA so I will have some explaining to do!!

Also have asked for my own blood tests to be done ,as last one done in January only to be told again yesterday by the receptionist, bless her, that doctor says everything normal. When I asked for readings I was told that she was sorry but she didn't know. I've now had to ask for a print out , which they have to check that it's ok to give me ( permission has to be sought from GP) so I imagine I'm not too popular at the moment. This is certainly a learning curve but with all this I feel that you have to gather as much info as possible and within reason make those informed decisions yourself.

Jackie

PMRpro profile image
PMRproAmbassador in reply to Jackoh

It is your right to have all your results - and all your consultant letters and stuff too. That's how you find out the consultant's dictated info must have been for another patient since it bears NO relationship to what happened during the consultation at which you were present! That's happened to me a couple of times. Or that result they said was "normal" was actually way outside the range quoted on the report. Or the cholesterol (for example) that they claimed was so high you needed a statin or you'd have a stroke tomorrow was actually just 4 points above the 190 that is the top of the normal range and your HDL was 30 points higher than most people's so if it were the usual level that total cholesterol would be way below the limit...

I'm so glad I live somewhere where not only are all test results put straight onto the computer for my GP to see but I can also collect my own copy. For X-rays it is my responsibility to get my own report and any tests done in another hospital are either written up immediately and discussed with me and pressed into my hand or sent to me by post for me to take to the GP who then scans them into her notes.

Parijm profile image
Parijm in reply to Jackoh

Jackoh. Your post covered many similarities to my own experiences. When I phoned Surgery for blood results I was told they are fine. What is fine I ask? "oh I'm not medically trained, they've tested you for lots of things"! Could you let me know the numbers for my ESR and CRP levels I ask? ... I decided not to worry her further but to make a GP appointment so that the results could be explained to me. Like you I think it's only fair we should have results explained and knowledge is King and will help us manage our own condition. Will see if I dare ask for a printout of my results at GP appointment this week!

Jackoh profile image
Jackoh in reply to Parijm

Yes do. As said by PMRpro they are our records and it's good to have copies of all the tests to check and keep track of ups and downs. It may be a hassle getting them but they can't really refuse them. Keep smiling as we hassle!!

Jackie

Carrollee profile image
Carrollee

Thanks to all those giving advice on alendronic acid. Really appreciate your time and it's been a real eye opener. Good to see both sides of the story too. cc

Wells77 profile image
Wells77

Despite normal bone density dexa result 2 GPs tried to persuade me to take AA as a preventative. I had an in depth discussion with my dentist as I have poor gum health. He tactfully refused to advise me either way .However there are clearly potential dental complications if an extraction is needed and treatment may have to be carried out in a hospital. Effects of AA can last up to 2 years after cessation. I personally felt dental risk greater than bone and chose not to take AA.

PMRpro profile image
PMRproAmbassador in reply to Wells77

It isn't known how long AA effects last after cessation - it remains in your bones probably for life and they have no evidence as to what the really long term effects are. It has only been in widespread use for people for about 15 years - before it was only used for Paget's disease and something else tht is also not common. You only find the real problems once large populations are taking such stuff.

If you have normal bone density why would you take AA "just in case"? I've not taken it - my bone density was exactly the same after 3+ years as after 3 months of pred. If I am ever shown a dexascan that is bad I'll consider it - not until.

Jackoh profile image
Jackoh in reply to PMRpro

Yes totally agree with your comments.

You may also like...

Alendronic Acid or not?

scared truthfully of the Alendronic Acid. I seem to have had most of the side effects associated...

Alendronic Acid and...

days. My Doctor also prescribed me Alendronic Acid once a week and ran me through the pluses and...

Alendronic acid or not?

when I started Pred, my GP insisted I took Alendronic acid to avoid osteoporosis. I asked for a...

Update Alendronic Acid

Following on from my post four days ago, with regard to Alendronic Acid. I had my telephone...

Steroids and alendronic acid

prescribed prednisolone and alendronic acid. After investigating the alendronic acid I am not sure...