After much thought and discussion, I have spoken to a GP from my practice today and he has agreed that I can stop taking Alendronic Acid. I have taken it for the 3 years that I have been taking Prednisolone for PMR. I have now reduced my Pred dose to 4.5 mg, having lost 2.5 stone by following the Blood Sugar Diet by Dr Michael Moseley and am feeling so, so much better. I am really hopeful that I will successfully keep on reducing the Prednisolone over the coming months. The GP has also agreed that I can stop taking Omeprazole - he even said that he does not routinely prescribe Omeprazole which makes me wonder why I've been taking it!! Anyway, onwards and upwards - at least I will not be having to put up with the side effects of the AA and the Om.
Alendronic Acid and Omeprazole: After much thought... - PMRGCAuk
Alendronic Acid and Omeprazole
Did you ever have a bone density scan?
No, I've never been offered one.
Well it's really good that you can stop two meds that have been giving you side effects, and good luck with the pred tapering. I recently heard a radio program where they were discussing some of the various popular diets, all of which work to some extent, and the one thing they all had in common was reducing or eliminating sugar! Sounds like you are on to something....
Yes I am on this diet too and it is working! Hurray!
Michael Mosley is great! I have a couple of his books
Great news! Will have to have a look at this diet- always good to cut down on sugar. I have been following a very low carb diet which is also very good.
Jackie xx
Fabulous news. Congrats. So interested in what you told us about losing weight on The Blood Sugar Diet. I am going to look into this. I like Dr Mosley.
Yes you can stop taking Alendronic Acid when you have reduced to 5mg and I couldn't wait as it made me feel really sick etc but I have been on Omeprazole for years and still am xx
Did you manage to get off the Prednisolone altogether? If so, how long did it take you to get from below 5mg?
Know the questions not directed to me, but it took me 18months to get from 5mg to zero. See also my answer (below) to pammy_hyland re coming off AA.
Hi Pammy, I'm interested in your comment about not taking Allendronic Acid once reduced to 5mg. prednisolone.
I'm currently on 3mg and was going to ask my doctor if I could stop taking AA and the Adcal D3. Do you know if there's a source of info on this that I can show my GP? Thank you X
First of all, did you ever have a bone density scan? Your case with the doctor will be much stronger if it's shown your bone density is not in the osteoporosis range. As far as I know the latest recommendation is that no one should be offered these bone meds if they are "low bone mass" or have "osteopenia". Furthermore if you are at low risk (reasonable t-score, no so-called fragility fractures, low dose of your glucocorticoid) a drug holiday, perhaps complete cessation, may be best medical practice anyway.
You may find this article interesting:
medscape.com/viewarticle/85...
You may wish to evaluate whether you need to keep taking a calcium supplement. Some people get plenty of calcium from their diet. But you shouldn't give up the Vitamin D3 unless you are tested and found to have a high level - unlikely. Vitamin K2 and magnesium and a few other micronutrients are also important for bone health. Certainly your Ad-Cal is not in any way in the same category of risk as AA.
Hi Pammy_hyland,
Also interested in your comment re coming off AA once you reach 5mg of Pred. Never heard that before, but do know that you shouldn't take it (AA) for more than 5 years. Did both these circumstances arise at the same time?
I came off AA following discussion with my doctor after 4 years, and we agreed I'd been on it long enough, and I was down to 1.5mg Pred per day by then anyway.
Do you mean coming off AA?
Sorry, my last sentence was a bit confusing, I came off AA when I was at 1.5mg Pred. In response to pammy_hyland.'s comments about dropping AA when you reach 5mg Pred.
Hope that make sense now!
There are people who think that at 5mg pred there is no effect on the bones - not so, there can be. But I have not taken AA (except 4 tablets right at the start) and my bone density is still well in the OK range without it. Only about 40% of people on pred develop osteoporosis - and about 50% of the general population develop it anyway. You can't blame pred for doing something that commonly happens anyway!
It seems to me that pred did have an effect on my bones, although as I had no pre-pred baseline DXA scan it's impossible to prove. But the mere fact that as my pred dose has come down below 5 mg the extreme tooth sensitivity I'd developed has greatly diminished, and I no longer feel my teeth are moving and becoming more crooked, tells me something. Don't think I can credit only diet and exercise for helping with this particular symptom. 
Hi DorsetLady, only just read your post above. Is that true that you're only supposed to take AA for 5yrs. I've been on it for 10yrs and no one has ever mentioned a time limit. It's a bit scary to think what may be happening.
I do get so annoyed when I hear of things like this that should come from the GP. If it wasn't for the internet and websites like this one I wouldn't know anything.
Do you know what problems may be caused by taking it longer than the recommended time?
Hi,
In the paperwork with the tablets I had, it stated that after 5 years you should come off AA. However having just looked at the patient's info on another site albeit for another manufacturer, it doesn't say that!
It seems to be one of those drugs that polarise opinions, as I said I took it for 4 years with no problems, I was susceptible to osteoporosis (hysterectomy at 37), but didn't have a DEXA scan prior to prescription- some on here will roll their eyes to that!
But after being ill for 18months (previously fit as a fiddle except for slightly raised BP) and losing sight in one eye, afraid of losing other one, I took what tablets prescribed. I'd never been one to look at medical books or web with symptoms, so assumed GPs knew more than perhaps they do!
Anyway, back to your question, any use can cause problems with oesophagus, kidneys, bones (despite the fact it supposed to help), but as with any drug some people get the bad with the good. I think some of the drug effects stay in your system for many years after you've finished taking it, so it may be wise to have a break (sorry, no pun intended) after a few years. I think it depends on your individual circumstances.
Might be an idea to dig out paperwork- even though it gives every side effect under the sun (scary, but probably not relevant to most) - have a read through and maybe discuss with your GP, or even pharmacist, sometimes they have more time.
Take care,
Thank you DorsetLady, much appreciate your info and taking time to reply. X
The FDA (the US drugs approval and monitoring body) ordered a warning to be included on the Fosamax pack that it should bot be used for more than 5 years without a therapeutic break - to reduce the risk of adverse effects associated with longer term use which include atypical femoral fractures (fractures of the thigh bone which happen without trauma). Since then I have been told that the recommendation now is for less than 5 years - not sure if that is true. There are 2 ladies on this forum who have had such atypical fractures - after just a couple of years of AA.
There seems to be some dispute - but it does seem reasonable on the basis of this paper:
ncbi.nlm.nih.gov/pmc/articl...
that they really shouldn't be used without good reason. I fulfilled point 1) under Drug Holidays other than taking pred. I have not taken AA (apart from 4 tablets). My bone density has barely changed in over 7 years on pred for PMR so the AA was never needed. IMHO the essential basis should be a dexascan - blind prescribing of the AA "just in case" should not happen.
Thank you MayH and PMRpro for your replies. I do find it amazing that no one has brought this up at my GP surgery. As I said previously I've taken AA for 10yrs thinking it was necessary along with the Steroids and the Mepradec for the stomach. I do know I couldn't take the pred without mepradec as I mistakenly missed it out and got really painful heartburn and indigestion.
Over the last five years I've had a lot of pain in my jaw and face to the point that eventually I've had all teeth out. It's only now that I realise it could well be a reaction from the AA as I still experience pain in my jaw, gums and face.
I've only started to question taking AA now, because of reducing the steroids and since being on this site I realise I may not need the calcium either.
I've just started my reduction down to 2mg from 3mg and using voltrol gel for pain in my lower back, hips and legs and it seems to be working so far. I'm alternating between 3mg & 2mg for the next two weeks then reducing to 2mg for a further two weeks. Depends on how I feel whether or not I remain on 2mg a little longer or start to reduce again.
I decided on this method because of a comment made by a someone who seemed in the know! They gave the impression that if steroid doses are dropped to 0mg one day then reinstated the next day it could kick start the adrenal glands.... it didn't go any further than that but it occurred to me to do this on a low dose over a short period might just work.
I'm also trying to be a little more active in the hope that will stimulate my own endorphins to help with the pain. One reason I need to do this is because I have Fibromyalgia too, appropriate rest and activity helps keep that under control, if pain doesn't ease I know it's PMR.
Thanks again for your helpful info. Xx
It is perfectly possible your GPs aren't aware of the questions. The drug reps won't have mentioned it! And Fosamax was marketed as being the safe way to avoid elderly ladies breaking their hips - often a death sentence in the past. What doctor learn at a particular stage of their education sticks and it is often very difficult to disillusion them and persuade them otherwise. It was not until the stuff had been in widespread use for several years that questions arose - and the longer it is in use by more and more people, the more obvious they become. But if you haven't come across the patient with bilateral femoral fractures because of AA you will continue to believe it is very very rare - but since I have already come across 2 ladies on this forum alone who have the problem I question whether it is as rare as is claimed. And so do others.
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