Should I take Alendronic Acid?

Posted , 3 users are following.

I suffer from Polymialgia R and have been for a year now. My doctor put me on Prednisolone steroids and Alendronic Acid, but, I heard such negative things about the latter that I decided to give them a miss as I was only expecting to be taking the Preds. for a year, and thought that a high intake of calcium and vitamin D would do the business.

The doctor now tells me I will be on steroids for at least another year and possibly a lot longer.

Should I start taking Alendronic Acid or is there a better option, or at least one with less drastic side effects? I'm a sixty five year old male who has several Auto Immune Problems who until the onset of PMR considered myself fairly actve.

0 likes, 9 replies

Report / Delete

9 Replies

  • Posted

    I have PMR, I have been on pred for over 5 years. In the first almost 3 1/2 years I was on above 10mg pred the entire time and my bone density has not changed noticeably in that time: I had a dexascan 3 months into pred and another a couple of years ago on a different machine so they can't be compared directly but both were acceptable. I have only ever taken calcium and vit D supplements.

    You should request a dexascan to assess your bone density status. If it is fine then you can continue as you are. If you are already osteoporitic or borderline, then make your considerations on that basis. 

    Taken carefully in accordance with the instructions AA is found by many patients to be OK. For some years it was touted as the miracle to avoid every fractured hip in the elderly - more recently it has been realised that, while it is good, it is not THAT good. It has side effects (like every drug) and some of them mean it is better not to take it continuously for ever, it is recommended it not be taken for more than 5 years without a break. 

    First of all, ask for a dexascan. If your GP is difficult about it, it is possible to get them done privately and they aren't desperately expensive in the great scheme of things. 

    If you are shown to be immediately in need of "bone protection" medication then discuss it. There are other options. There are other bisphosphonates with differing profiles and there are other substances - but to be considered for them you have to have "failed" the first line things (to use medical parlance) or there must be a good reason for you not being put on them (preexisting gastric problems such as reflux etc) or allergy. All have some side effects.

    Report / Delete Reply
  • Posted

    Hi Steve.  First of all I am sorry to hear of ill health.  I joined this forum 18 months ago in responce to my own father's experience with alendronic acid.  My father was diagnosed in his early fifities (he will turn 76 shortly) with polymyalgia rheumatica (PMR) and fibromyalgia and an underactive thyroid.  He has been on prednisolone ever since and calcium tablets and up until 18 months ago he was on alendronic acid.   Other than dental problems he was able to take it with comparitively few side effects,  however,  18 months ago the pharmacist couldn't get hold of his usual brand so gave him a generic brand.  Within half an hour of taking these he experienced serious chest pains and awful head pain.  He decided it was his imagination and the following week took another tablet - he was n weekly doses.  The same thing happende again,  only this time slightly worse.  Still,  thinking he had to get used to them,  the third week he took the tablet again and collapsed.  Enormous head pain, chest pain,  could not breathe,  dreadful muscle pains in arms and legs and could barely walk.  Heart attack was ruled out.  Every doctor denied the link between the oset of the symptoms and the tablets BUT  immediately took him off them and he has not been put back on them.  Fast forward to the November of 2013,  about five months later.  He had recovered sufficiently,  but began to develop chillblains according to the doctor.  Unbeknownst to me he had also collapsed on myriad occasions in the coupleof months prior to this. The "chillblains" got worse and worse and a few days before Christmas the doctor realized he had misdiagnosed him and he had critical limb ischaemia and was in danger of losing his feet.  The vascular surgeon was brilliant ,  but in the course of his investigations discovered what looked to be four blockages in his abdomianl arteries which had been causing the attacks.  It is not out of the question that they were caused by the alendronic acid and although we cannot get a doctor to confirm this,  neither will they deny it as a possibility.  Eventually it turned out that my father had never had PMR but peripheral arterial disease.  The surgeons performed a life saving arterial graft on Christmas Eve and praise God he is still with us. As a result,  althugh he no longer needs the prednisolone he has to now stay on it for life due to being on it so  long. My advice and that of my father's is 1) do not touch alendroic acid and 2) get your doctor to rule out peripheral arterial disease which can mimic PMR. I hope htis has been of interest if not of help.  I wish you well,  Beulah.

    PS  They are trying to ban this drug in the States.

    Report / Delete Reply
    • Posted

      Beulah - it is perfectly possible it WAS PMR he had originally but more towards the GCA (giant cell arteritis) end of the spectrum and that can lead to PAD as a late consequence. All patients with GCA should be monitored for that - can we get them to do it? Not yet!

      The difference between PAD and PMR is that PMR would respond dramatically to a moderate dose of pred (15mg). Any patient who does not respond like that - and by dramatic I mean a 70% improvement in symptoms generally within 24-48 hours - MUST be investigated for other possibilities, including PAD.

      Report / Delete Reply
    • Posted

      Good morning Eileen.  Thank you for your comments.  What I did not include in my "essay" to Steve was that Dad's PMR tests were never conclusive from the beginning,  but,  even knowing his history of smoking,  high blood pressure,  family history of PAD, detailed day to day symptoms the GP's persisted with PMR diagnosis and would not consider anything else.  ESR readings were always negative and although he responded to 30mg of preds very well he was never without pain and could not walk far and he could never come off the steroids.  Furthermore,  the pain was only ever from the hips down.  The headaches and chest pain weren't an issue until after the Alendronic acid issue and GCA was ruled out.  After discussions, tests and you name it with the vascular specialists all of a sudden the GP's were saying the tests for PMR had always been conclusive.  As I had attended appointments over the years where the self same GP's had said they were inconclusive but it was the likeliest diagnosis I am very sceptical.  Two days after the graft my dad has been pain free.  It will take us a lot to convince us he ever had PMR /GCA given what I have seen from his symptoms over the 20 odd years.  He is now mobile,  can walk further and faster than he has been able to in over 20 years.  Unfortunately,  the problem is getting off the prednisolone which is proving difficult, talk about cold turkey. He now has a control dose of  2mg,  any lower he gets incredible shakes and chills.  Anyway,  thank you for your interest and concern and take care,  Beulah
      Report / Delete Reply
    • Posted

      I take a great interest in such things - I'm a patient rep on a PMR research group so hearing strange aspects is useful and sends me off to do even more reading!

      There are no conclusive tests for PMR - as I'm sure you are aware - but yes, you are right, it doesn't sound greatly like PMR if it took 30mg. That is part of the reason for only using 15-20mg to start: only PMR responds so typically to that, other things respond to higher doses too. My ESR/CRP were also low, ESR never above 7, but I responded in 6 hours to pred! The GPs were definitely at fault if they allowed him to continue with claudication - since that is a strong sign of GCA or at least LVV (large vessel vasculitis) and if the pred isn't improving it then it need to be referred to a vascular surgeon for assessment (my husband ran a diagnostic vascular lab so I gathered a fair bit about that, even working there for a while).

      Have they considered his adrenal function? Done a synacthen test? That would fit with the reaction if they try to take the pred away altogether.

      Report / Delete Reply
    • Posted

      Hi,  They won't do one,  they "don't see the point"!  Good bunch of GP's,  eh?  His GP is off to become advisor to Barclay Premier League,  so hope his new one will listen better.  Half the problem is they are so pressured on time,  5 mins per patient.  The hospital are making way more progress,  it is just sad that the lifespan of the graft is limited.  Won' be online for while now,  so will check in later on.

       

      Report / Delete Reply
  • Posted

    Sorry,  Steve,  it is Beulah again.  Have jsut realized that my post was riddled with spellng mistakes.  I pressed send before checking the spelling.  I'm not usually so illiterate.
    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up