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.
0 likes, 57 replies
EileenH april1247
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.
macas02 EileenH
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
EileenH macas02
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?
april1247 EileenH
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.
april1247 macas02
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.
macas02 EileenH
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...
macas02 april1247
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.
april1247 macas02
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Love it! Made me laugh. Still, I guess we don't go to doctors for their sense of humour do we!
Elijo macas02
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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!
macas02 Elijo
Posted
Thank you for your good wishes,
kathy67492 april1247
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😊
...but, in the end, you will have to decide for yourself. Best to you on your journey.
april1247 kathy67492
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...
EileenH kathy67492
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april1247 EileenH
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may66088 april1247
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april1247 may66088
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Anhaga april1247
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april1247 kathy67492
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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.
EileenH april1247
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Michdonn EileenH
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EileenH Michdonn
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K2 is Anhaga's field! 1000 IU of vit D is fine - more might be better but try and get a blood level done.
Anhaga Michdonn
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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.
Anhaga
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!
Michdonn Anhaga
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Michdonn EileenH
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april1247 Anhaga
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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?
april1247 Anhaga
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EileenH april1247
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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!
Michdonn EileenH
Posted