Alendronic Acid, prednisolone and PMR- help please!

Posted , 8 users are following.

To take or not to take, that is the question...There is a lot of clinical evidence to be found for the fact that AA can increase bone density which helps to lower the incidence of fracture caused by osteoporosis, steroid induced or otherwise.  I have taken a couple of doses, and it is causing me a lot of grief with gastric problems, which I have never had previously.  There seems to be a lot of resistance to taking AA for that reason, and also apparently for the quality of bone laid down. Can anyone point me to clinical evidence, hopefully backed up by peer review that casts doubt on bone quality, and any other reasons for not taking AA? I've just turned 70 and my GP has told me that it doesn't matter what any DEXA scan says, but that I am seriously at risk of osteoporosis because of my age anyway.  I am doing all the right things in terms of diet to help mitigate the effects of pred by taking the usual calcium and vit d tablets, and also taking vitamin K2 to help the calcium get to the bones.  I would appreciate any evidence, clinical rather than anecdotal so that I can back up my arguments against taking AA with my doctors, especially if I can point to evidence that loss of bone mass can be prevented by measures other than taking AA or the like. I was diagnosed with PMR a month ago and have just successfully reduced from 25mg to 20.  Will be taking it slowly from here on as suggested by Eileen.

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  • Posted

    This is the recent paper from Imperial:

    Long-term effects of bisphosphonate therapy: perforations, microcracks and mechanical properties

    Shaocheng Ma, , En Lin Goh,  Andi Jin .... , Justin P. Cobb, Ulrich Hansen & Richard L. Abel

    I haven't included all the names - it wouldn't copy nicely without a lot of fiddling!

    If you have gastric problems that is a good reason NOT to take AA - there are other drugs that do the same job and are taken monthly or even less often. But of course they cost more than AA which is why they start with that.

    I have been on pred for nearly 8 years, much of the time at above 10mg/day, for a long time at nearer 15mg. I have had only minimal bone density loss as assessed by dexascans at the very beginning, after 4 years and another last autumn. I have been on calcium and vit D supplements the entire time, no AA. I refused to take more until I had a dexascan done, the results were good and the GP agreed with me that the evidence for AA is somewhat mixed - if you remove the claims of the manufacturer! But doctors taught it was the miracle drug that would banish hip fractures for ever are difficult to convince otherwise.

    Two ladies I know in their late 70s also did not take AA, one has "the bone density of a young woman" and was on high doses of pred for GCA for 5 years. The other has had PMR twice, is in her 80s now and when she had her joint replacement (not sure if it is hip or knee) was told that she had very high bone density. That is a problem - there is an assumption we have low bone density without checking and AA handed out. If you already have good bone density then taking AA may take you into TOO high a density. 

    Anhaga is the expert on natural methods of raising bone density and the medical evidence for it - not to mention anecdotal as she raised hers from -2.1 (requiring treatment) to -1.6 (no treatment needed) in a year. She'll appear later when Canada gets going.

    But the bottom line is that no-one has shown good correlation for a particular bone density and fracture risk. People with good bone density have fractures, people with low bone density don't. Density is not the real concern I believe - it is the quality. Very dense bone can be brittle and fracture anyway. And on another forum we have at least 2 ladies with PMR who have had bilateral femoral fractures as a result of taking AA (say their consultants) meaning months of immobility and being on crutches as they aren't healing and a few others with jaw/tooth problems also possibly due to AA. 

    • Posted

      I have been on Pred for 7 years and decided not to take AA as a precaution, I am in my 70's and have just had a Dexa Scan and was told I have the bones of a much younger woman !! So as we keep saying we are all different.

      p.s Eileen I spoke to you about probs with my teeth and you mentioned your sister was also having probs, I now have a lawyer dealing with the dentist involved I believe your sister is doing the same?

      Mary

    • Posted

      It's a cousin, but yes, they have got a claims lawyer on the job and that should pay for the megabucks treatment a Harley St specialist is trying in the hope of saving her teeth.

      Pleased to hear about your bone density - it would be very interesting to find out how many of us who didn't take AA have no problems wouldn't it?

    • Posted

      Thank you so much Eileen...I guessed that you might be the one to come up with some clinical evidence.   I had a DEXA scan three years ago when I broke my ankle walking in very slippery conditions, and it was perfectly satisfactory.  My rheumatologist is trying to get hold of the results so hopefully next time I see him we will have a base line from which to work. My GP doesn't want to give me another scan, (says it doesn't make any difference what the scan says, but because of my age I need AA, but I'm really not convinced) but I'm going to try and get one privately through the rheumatologist.

       

    • Posted

      Thank you for that, its reassuring.  Can I ask if you are a very energetic sporty person?  It's just that people who do a lot of weight bearing exercise are supposed to have stronger bones than those of us that don't, and I was wondering if there might be a correlation in  your case!  Or maybe you're just lucky! When I had a DEXA scan three years ago I was told there was no need for any treatment or extra calcium, so I guess it was all fine.

    • Posted

      Yes I am spending a small fortune and there is no guarantee that I will win the case but at least I will have given it my best shot. Could take another year!!

      Yes I was delighted that my bones are fine and pleased that so far I have made the right decision not to take AA.

      I'm down to 2mg of pred and having been here before I am not rushing to get to zero...

    • Posted

      No I am not sporty at all !!!! and never have been.  I try to walk everyday but its more of a stroll, I also have AFIB which does slow me down a bit.

      When the Doc said I had the bones of a young woman I asked him where I could get the rest of her body!! he didn't smile. 

       

    • Posted

      Love it!  Made me laugh.  Still, I guess we don't go to doctors for their sense of humour do we!

    • Posted

      I had a law suit against a dentist who did unprofessional things to my teeth, resulting in some surgery and lots of problems.  My case took over 2 years to get to court.  That dentist never even showed up, but another dentist whom I went to for "remediation" did testify, so did I, very thoroughly.  I got a $500,000.00 judgement, but haven't seen a penny of it; that was over 2 years ago.  My lawyer took the case on contingency, but I did pay over $4,000 for the very thorough medical investigation that was done by an expert.   I would love to have some of that money at pay for the implant needed due to the shoddy work, but don't have much hope.  (nothing to do with PMR, just an added note).  Good luck to you!

    • Posted

      Yes my remedial work is costing the earth, besides being painful and very stressful I have had 2 teeth removed and an implant removed besides seeing the periodontist for some pretty tough appointments, If I dont want o keep the denture then I must have the added expense of implants, My dentist had not xrayed my teeth for about 8 years........

      Thank you for your good wishes,

  • Posted

    I see you have some good responses already, so I will just offer my opinion.

    I too am 70..have been on Prednisone for 3-1/2 years, 2 Dexa Scans, recent one showed an increase in bone density of over 3%. I take calcium and vit D, vit D being the "addition" the last couple of years. My rheumatoid still worries most about spine/bone fractures while on long-term prednisone. I believe that is because that is what he has seen in his patients. He has a lot of PMR patients.

    On the flip side, I have personally know people who have taken the bone density drugs and have had major problems...digestive problems, jaw necrosis, etc.that have incurred permanent damage.

    I will not take those drugs. This is a great forum with a lot of helpful advice and personal experiences (most valuable😊wink...but, in the end, you will have to decide for yourself. Best to you on your journey.

     

    • Posted

      Kathy thank you so much.  I'm really interested to know that your dexa scan show an increase in bone density.  I know that the doctor will say its anecdotal evidence, but frankly, so many of these drugs seem to produce more problems than they solve.  I have decided not to take any more AA and hope that the gastric problems that I am experiencing will go once the stuff is out of my system.  I've only taken two, so I'm hoping...

    • Posted

      Hi my dentist advised to stop taking AA.  I had been taking it for  1 month.  He said to me if I needed tratment in the future I could have a lot of trouble.  I take calcium/vit D and Vit. K
    • Posted

      Thank you may, I appreciate your input.  Have just received delivery of vit K so its on the menu now, along with the calcium and vit D. At least if I rattle, it will be with vitamins and calcium...!
    • Posted

      May and April (are you related?) - Please note it is Vitamin K2 you need for bones, not the more readily available in the diet Vitamin K1.  Should always be clear about this so that the innocent stumbling across this thread in the future know what is meant!
    • Posted

      Kathy, can I ask you how much calcium you take?  You obviously seem to take the optimum amount for you, which I appreciate is different for everyone but it would beinteresting to know.  There seems to be such a difference in the various tablets on offer and I'm not sure how much to take.  Any help appreciated.

    • Posted

      The recommended supplement while on pred is 1200mg calcium and 800 IU vit D. If you have a high calcium intake in your diet then you may be OK with less. But the vit D is important too.
    • Posted

      Thanks, EileenH, I will get vitamin K2 today and up the calcium. How much vitamin K2? The pills I for the calcium doubled will bring my vitamin D3 to a 1000iu is that okay?
    • Posted

      K2 is Anhaga's field! 1000 IU of vit D is fine - more might be better but try and get a blood level done.

       

    • Posted

      I think there is not yet a RDA for K2.  I simply believe what the capsule bottle tells me, but in fact I've doubled that, taking 100 mcg K2 morning and evening.  Unlike some other fat soluble vitamins apparently K2 is not stored in the body so the likelihood of any overdose is virtually nil.

    • Posted

      Oh, and make sure you take your calcium in smaller doses - 400 or 500 mg at a time - as the body can't absorb a whole lot at one time.  Most of us have pred for breakfast, then calcium for lunch and evening meal, or perhaps near bedtime.  I like the bedtime dose because it helps me sleep!

    • Posted

      Thank you once again, I will do just that. I have been splitting the Phed with breakfast and dinner, I will go back to breakfast and take the calcium lunch and dinner. How about the K2 pick some up in Santa Fe this afternoon. You have been s great help. Thank you
    • Posted

      Anhaga, can you say why people don't take calcium at the same time as pred, at breakfast?  And a second dose with an evening meal?  Is it just because one ends up taking so many pills at one time, or is it some other reason?

    • Posted

      Thanks for that Anhaga, and I have read previous posts and have got the K2...

       

    • Posted

      Calcium and pred interfere with the uptake or each other - as usual can't remember which way round off the top of my head! They should be taken at least 2 to 3 hours apart. The body can only absorb up to about 500mg of calcium at one time - so if you take it all at one or have single dose 1000mg tablets you simply lose the excess in your urine which is a bit of a waste!

    • Posted

      Hi EileenH, thank you once again!! Looked it up. The calcium increase the Phed elimination. I will change when I am taking the pills.

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