in common with most of us on steroids, I have been prescribed alendronic acid. I have found it upsets my gastric system and makes me feel pretty dire so stopped taking it ages ago.
I have osteopena right now, DEXA scan recently revealed hips doing ok but spine becoming less dense. Do I push through the gastric problems and take the stuff or not? What does everyone else think? My calcium and Vit D levels are fine, by the way.
Hi Ayla
Did you take anything like "Pariet" (Rabeprazole Sodium) "gastro resistant tablets"? I take 10mg twice a day - half an hour before food. They were prescribed for silent reflux which was caused by the medication, but, of course, I don't know which particular one or ones caused it. I found I didn't have problems with the silent reflux once I started to take the Pariet. So maybe something like that might help. You certainly don't want a crumbling spine but then you don't want to have meds that make you feel lousy.
If the alendronic acid is the same as the Risedronate, then I took it once a week, first thing in the morning, half an hour before drinking or eating anything, and couldn't lie down during that time.
I've now stopped taking the Risedronate but I still take the chewy calcium tablets.
PatriciaAnn
Thanks for the answer, Pat. I do take omeprazole, so stomach protection is covered! AA still makes me feel bad; bloating/constipation, etc. Not sure what to do. Is ther a different brand or something that is probably more expensive to prescribe but less hard on the system?
Hi Ayla
I don't know the answer to that one, maybe others might.
I think the best thing is to speak with your consultant about this. Obviously you need some bone protection but you need something which you can tolerate or some other help for your system..
PatriciaAnn
There are alternatives, ask your consultant. there is also an injection you can have if your calcium and vit D are ok. I can't tolerate AA either, but haven't got my calcium and vit D right yet. I keep missing out my calcichew.
regards, sandra b
Thanks, both. Good advice. I did ask my gp about the injection some time ago and was told it was too expensive to give as an alternative to the tablets.
Some light at the end of the tunnel, though. Remembering something in my notes from the Chicago Vasculitis Symposium about alternatives to AA, I have ordered some strontium tablets. They claim to do the same thing. Anyone tried them?
Hi. Interesting thread. I take AA once a week and can't say that I have experienced any problems with it ( I do feel 'off' for a few days after injecting my weekly Methotrexate dose). I did look up the Addenbrooke's hospital advice with regard to AA. They mention that you should not take your calcium and Vit D supplement on the day that you take your AA. I didn't know that and have contacted my local Rheumatology Unit regarding this advice - awaiting comeback. The link to Addenbrooke's site hereunder:- cuh.org.uk/resources/pdf/pa...
Hi. Interesting thread. I take AA once a week and can't say that I have experienced any problems with it ( I do feel 'off' for a few days after injecting my weekly Methotrexate dose). I did look up the Addenbrooke's hospital advice with regard to AA. They mention that you should not take your calcium and Vit D supplement on the day that you take your AA. I didn't know that and have contacted my local Rheumatology Unit regarding this advice - awaiting comeback. The link to Addenbrooke's site hereunder:- cuh.org.uk/resources/pdf/pa...
I Have experienced side effects from A.A and stopped taking it .I have poor bone density re steroids and have now got multiple spine fractures on top of everything else .I am now to be reffered to osteoporosis specialist .I'm told there are alternatives but prescibing can be dependent on age i.e over 70 ,not sure why .I am 61 but will be attempting to get alternative medication due to the implications of long term steroid use .I have never heard of strontium tabs .
Are they over the counter meds ?
Yes, you can buy them through Amazon. The specialists lecturing at the Chicago Symposium offered them as a natural alternative to AA. You can google strontium and read about it. Am going to talk to my gp about it on Monday. She will probably say she has never heard of it!!
I will look at that one as I have learned the hard way re just stopping meds without looking at alternatives .
kind
regards
People think that osteoporosis is all about brittle bone disease, but it's much more than this. I've known a tall lady of 5'8" who was reduced to 4'7" due to osteoporosis. She was in constant pain because all her intervertebral nerves were being crushed - and medicine and surgery can offer no way out.
I took Alendronic acid for several years with no problems - you don't need it after you come off the pred or your dose is reduced below 2.5mg.
It's all about balancing risks - risks of no treatment vs risks of treatment.
If you take prescribed medication, it comes with all the risks defined as a result of clinical trials. Stuff that's advertised on the internet comes with all the recommendation of a bottle of snake oil. Not that it might be right or wrong, but there's no proveable clinical evidence.
I think there are clinical trials, John, to back up the claims of strontium. If you google 'research strontium osteoporosis' you can read about this. I am no expert, though, and would appreciate your further thoughts.
Strontium can be prescribed by your doctor. It is dispensed in sachets of soluble powder, and are normally recommended to take of an evening. I would only take them if prescribed, rather that self-prescribe. Contraindications of many of the medications taken with vasculitis would make it more importantant than ever to be sure they don't make the condition, or how you are feeling, worse.
Good luck, & kind regards 
Thank you, Polly pocket. Useful information. Will discuss this with my GP tomorrow. I read on the net that AA costs £53 a year to prescribe, while strontium costs considerably more - £333. Maybe this will be a deciding factor in whether or not I am offered it? Ever the cynic!!
I had never heard of strontium being used in this way. Having looked it up on Wikipedia, I see that it is usually in the form of strontium ranelate. It is listed in my copy of the BNF, but with a big "Severe Allergic Reactions" flag. The reactions are rare but can be fatal and it should only be taken under the supervision of a physician. It is recommended only where alendronates are contra-indicated or not tolerated.
It is true that AA weekly costs about £1 a week whereas Strontium ranelate costs about £1 a day although the proprietary types eg Fosamax is just under £1 a day.
Wow! Now that is worrying. Thank you for this information, John. It is think again time, I see.
I am not sure why so many people on this site seem to alter their medication apparently without medical guidance. I take AA but also take Omeprazole to protect the gastric situation. If I have a problem with side effects from my medication I seek medical advice from my vasculitis clinic.
Fair enough, good point. However, with the best will in the world, the medical profession is not omnipotent and vasculitis in its various forms has a lot of uncharted territory. I, and a number of others have found that swopping information about medication experiences has proved very useful.
Hi Ayla, I was prescribed 2 different types of meds to help with bone density I've been diagnosed as osteoporotic since 2004. Both gave me gastritis and I had to stop them, my Gp then prescribed Strontium Ranelate sachets which I have to take in the evening on an empty stomach or 2hrs after food. I have been on it for years without side effects. I had a Dexa scan yesterday so I will see if they are doing any good, fingers crossed. Aud :o)
Thanks, Aud. Fingers crossed for a good result from your scan. Can you let me (us) know the result when you get it?
Can I ask - when you were first prescribed the strontium ranelate, were you told about the possibility of severe side effects that John writes about?
I have just been prescribed Amilo-cofruse to take alongside Aledronic Acid and steroids. I find that the combination totally takes all energy out of me. Stopping Alendronic temporarily has helped. Has anybody else seen this side affect?
My husband was given another tablet to take to help the stomach problem have you be given one he finds it helped him.
We have had further results back today. Can anyone give me some understanding of them. 
How much vitamin D is safe Should we increase the dose of prednisolone in times of stress?Should we be totally honest in declaring all the symptoms of our condition when applying for travel insurance?
Anca associated vasculitis study
