I have had to stop taking AA as it was playing havoc with my stomach. It has been suggested that I could have AA infusions instead of the oral sort. Have asked for a bone scan first to see if I really need to have it at all. I am down to 3.5mg of pred and am ok on that. Anyone else have these infusions?
Liz.
Hi polymy yes I had the infusion last December and due another one in 2 weeks time I did not have any side effects at all
Thank you Freddie. I hadn’t heard of them before. How often do you have the infusion and what does it involve?
Hi it is an annual infusion into the vein at the back of my hand, took a few hours and I was fine to drive home after.
Yes, you are right to ask for a scan - you should have been offered one before starting AA but it seems that none of us ever are!
I was never offered a scan so thought I would ask as I may not need AA. Thanks to you good people, I have learned to be proactive with my pmr treatments. I now control my own pred dosage too.
Liz.
I wasn't offered either, but after about three or four months on pred and a doctor who wanted me to start AA I'd done enough reading to know that I should have the scan. Had she put me on AA right at the beginning I wouldn't have known better than to accept the med. Mind you, the results made her even more keen to have me start but she was reasonable enough to let me make my own choices. 
I saw Rheumy last week and asked for a dexa scan but he said no (as did my GP previously) as it's not necessary. He said that the AA is to look after bone for the future. I told he I can't take it as it upsets my stomach. He suggested yearly injections on Zolendronate. I told him I'd like to look into this first.
When I checked it out it looks like it can give you flulike symptoms, aches in muscles and bone etc. Don't think I could take any more symptoms!
I'm thinking of paying private for the dexa scan.
Has anyone had Zolendronate?
What rubbish. Without a dexascan no-one can know what your bone density status is. It is recommended in guidelines that patients starting on potentially long term steroids have a dexascan done within the first 3 months to give a baseline and the decision then made as to whether calcium and vit D supplements alone are adequate. They have been for many of us.
It is recommended that people with normal bone density do not take bisphosphonates as they can lead to formation of too dense bone. After 7 years on pred, much of it at above 10mg/day my bone density had barely changed. I know several other people on the forums who did not take them either and have never had a problem. Some of them were in their 70s and even 80s when told their bone density was excellent.
Evidence is now emerging that long term use of bisphosphonates may lead to the formation of brittle bone with cracks in it so they should not be used for more than a couple of years without a holiday from taking them.
By the way - asking about people on zolendronate would be better done in a new post, not many people will see this unless they are actively following the thread.
I too was told that I needed to take Alendronic Acid because the steroids would affect my bone density. I asked for a Dexa and was told it was not necessary. I suggested that my bone density could be ok as I took HRT for 13 years. The GP told me it was better to be safe than sorry. I am constantly forgetting to take it and believe this is due to my psychology deciding that I am taking something poisonous for no reason. Is the general belief that steroids make your bone density thinner over the years or is it a quicker process than that?
Most is thought to occur in the first 3 months. I had my dexascan at about 3 months I suppose - and since then it has barely changed. No AA. Just calcium and vit D for 7 years.
Thanks PMRpro. I've been taking steroids and AA for just over a year. Why is my GP reluctant to refer me for a scan or to a rheumatologist? Is it the cost?
Who knows - although they aren't particularly expensive. At a guess they believe that loss of bone density is inevitable with pred (no it isn't) and believe the fantastic marketing stories from the manufacturers of Fosamax, the first widely available bisphosphonate., which is now beginning to show its feet of clay. It has its role - and I believe that isn't using it for every patient "just in case".
Taking AA or not
More about Dexascan / AA / Adcal
