Fostepor once weekly 70mg

Hi Ron

Welcome to our club. I have had PMR now for 20 months and am still on 13.5mg (down from a high of 25mg). Alendronic is one of the drugs I worry. Was prescribed them originally and told to take one tablet per week (70mg) but after reading what they can do and the side effects you can have I decided to have one month taking them and then one month off. Probably wasting my time that way but better than not taking them at all. On the day I take them my muscles and joints do tend to ache a bit more than usual but within 24 hrs I am back to normal. Hope this helps and good luck. Regards Dave (tavidu)

I hadf just started taking it when y dentist refused to do deep canal work whilst I was taking Alandronic acid, so I stopped for 6 months so the work could be done and changed dentist. The new one thought she was being a bit OTT but said he would sympathise with her had I been taking it for years.

Sorry about the spelling, touch screens don't go well with fingers like mine

Welcome to a new member.  Hope your 'journey' won't be too long.  Take care.  

Most of us steer away from it, but the experts will be along to advise.

Ask for a DEXA (bone density scan) to establish a baseline number T score.

If you are not osteoporotic (or osteopenic) then you don't need it, where's the sense in taking something now that you don't need? Also AA can only be taken for 5 years.  If you begin it now when you don't need it, what will happen in 5 years time if you do need it then?

A baseline for both osteoporosis and a chest X-ray should be given to all new patients diagnosed with PMR/GCA, it is in the guidelines for treatment.

Nefret has answered the question.  I took AA for a month and felt so unwell that I stopped.  My GP agreed with me as I mentioned I need a Dexascan to get a baseline but I have had no problems during my 19 months journey with PMR.

I started on 30 mg of Mr Fred and reduced down to 15 fairly quickly.  It has taken me around 17 months to get down to 4.5 mg without any problems.  I use the dead slow and nearly stop method.

Best of Luck - John (75)

Have you had a dexascan? I would not take alendronic acid until I had had one that showed I was close to developing osteoporosis. I took a few at the start because they were handed out to me with the pred but I did my due diligence and decided I wasn't happy. When I had the results of the dexascan my bone density was fine and after discussion with a different GP I stopped taking AA. Well over 3 years later I had a follow-up dexascan and the readings hadn't changed at all in the meantime despite being on well over 10mg for almost the entire time. I could have been taking it without needing to for all that time. 

It was marketed to a generation of doctors as the perfect drug - no side effects and it would stop everyone from running the risk of hip fractures. Needless to say, that was marketing hype and once it was being used for many thousands of real patients for a long time it started to emerge that with time there were things that develop. There are 2 ladies on another forum, one developed shin splints after about 2 years and the other has bilateral femoral fractures after 18 months - the doctors think that in both cases it was due to AA, which they had both taken for less than 2 years. The FDA warning is it shouldn't be given for more than 5 years as after that the risk of spontaneous femoral fractures becomes unacceptably high.

The recommendation from the British Society of Rheumatologists is that bone protection medication in the form of calcium and vit D supplements should be given pretty much automatically unless there is a good reason not to (renal problems or too high a blood calcium level for example). A dexascan should be carried out in the first few months of pred treatment. If the bone density is OK, it should be repeated after 2 years more of pred. In patients who are over 65 (so post menopausal) they assume they will be osteoporitic and say AA should be given. In fact, these days that is an assumption that is far from correct! Only a dexascan can tell you if your bone density is low. And men are not going to suffer from post-menopausal bone density loss! They can have osteoporosis - I'm not denying that - but it is far less likely.

Many of us don't/didn't take AA for all these reasons - and more. Or because we just weren't given it. But it is NOT inevitable that you will develop osteoporosis - only about half of patients on pred do and unless you have had a dexascan done, it is impossible to know whether it was the pred or because you already had low bone density.

If you google "alendronic acid patient.info forums" you should get a set of links to previous threads discussing this topic - here is what you'll probably get but not as links (it would take me ages, I managed to cut and paste this...)

Bone pain with Alendronic acid.Thread discussing Bone pain with ...

26 May 2015

Alendronic acid losing teeth.Thread discussing Alendronic acid ...

24 Sep 2014

Worries about alendronic acid.Thread discussing Worries about ...

17 Jun 2013

Alendronic Acid and side effects - useful reading.Thread ...

23 Dec 2007

More results from patient.info

Then come back and ask any specific questions you may have. 

 

I just had a DEXA  3 days ago; the MD's nurse called and said I had mild osteopenia (which I've had, I'm an older woman), and the MD said I could start on 35mg. fosamax once a week, or wait until my appt.in March and discuss it with him.  I'm waiting, and I do NOT intend to take it,  there is too much negativity about it.  I do not take calcium due to a high calcium blood level, but do take 1000mg. D3, and eat a fairly well balanced diet.      I  would like to add that in Sept. when we went to a tour in Spain, I tripped and took a very serious fall, big bump on my head, 8" black bruise on my hip, etc. Xrays showed NO broken bones, all though it was painful, of course  My PMR dx was Nov. 1..  

I strongly believe there is no reason to take a pill for everything, too much hyipe on this.  Let our bodies heal as naturally as possible in many cases.  Too much pharmacy!  Prednisone?  Yes!  I can fully function and have a life!  Yea!