Hello again! This forum is becoming more addictive than Facebook now and I am finding myself rushing home from work ( supposed 4g signal rubbish in our office!) to read all the new posts of the day!!
I have been to see gp for review and today I have started another reduction down from the original 15mgs to 14. ( first attempt from 15mgs to 12.5 lasted 3 days) My gp advised between 2 to 4 weeks even 3 as a medium although I am thinking 4 ( he totally poo pooed the dead slow reduction saying in 30 yrs of practice he had never heard of it so we compromised on the 1 mg reduction each time). Does this all sound reasonable?
Also he is adamant I start taking the AA now based on a family history of paternal grandmother with severe osteoporosis. I had a DEXA scan. No results yet but gp is saying that even if scan ok now that is now and won't predict the future.
I am scared after reading all the side effects and have just read some of the recent posts on AA that compound my scared state!!
What are your thoughts?
Many thanks.
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pmrdec112014
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Hi there. Yes this site is definitely addictive but such a great help. I've been on AA for about nine months. I hate it, hate taking it. I've read all the reasons why people say not to take it, but my Rheumatologist and my GP both say I definitely should take it. I'm 61 and as far as I know have no family history of Osteoporosis. I've not had a Dexa scan yet. I'm taking it on their recommendation because I fear what might happen (and can't be undone) if I don't. Angela.
I've been on prednisone for a little over 2 years and one year in got sideswiped in the dog park, and although I had a winter coat on and fell rather gently, broke my hip. My previous bone scan had indicated osteopoenia. Now I'm on Forteo. Does anyone have experience with this drug?
Of course he hasn't heard of it before in 30 years - we only realised what was going on about 4 years ago and worked on the concept with a lot of trial and error. After all, we don't have to go to the ethical committee. It is working for a lot of people and rheumatology consultants are becoming interested too. He may pooh-pooh it but his first idea didn't work did it?
You can do part of the slow reduction anyway - it just smooths the way you go from every day old to every day new dose, even a week of one day old/one day new will help greatly with 1mg drops and the GP need never know. You need a month at each dose to know you are OK before going for another reduction. Just never forget that you are nOT aiming for zero - you are looking for the lowest dose than manages the symptoms acceptably. That might be 9mg at present - if you are lucky it will be much lower. But you can't reduce to a timetable, flexibility is everything at this stage.
AA - I would wait for the dexascan and see where you are before making the decision. AA has its place - it is the use "just in case" I object to. There is family history of osteoporosis in my family but in well over 3 years my bone density didn't change even without AA. If I need it later I would accept it, but only when it is shown I need it. It shouldn't be taken for more than 5 years without a break as the risk of the side effects increases greatly after that. Before starting on it (if you can't get out of it) make sure you have had all dental work you might need done, pay great attention to dental hygiene and make sure that your GP has checked both vit D levels and calcium levels and corrected them if they are not good. They must be right for AA to work - if you have to take it you might as well do it correctly!
It is felt that there is no point doing them more often than every 2 years because the changes are relative and the machines aren't that accurate in that sense. The BSR guidelines used to say every year (don't know if that is still so) for patients on pred - however, it has to get past the local rheumatologist who checks referrals for validity/appropriateness. I was refused one after 18+ months on those grounds - it would have been 2 years by the time it was done but hey ho! The demand is higher than the number of available machines (where have we heard that before). Southhampton hospital does private scans - I imagine because they can't get funding for extra technical staff but can do private ones in the down time when they haven't got it being used for NHS where it becomes self-funding as you pay the cost of the technician.
Said rheumy expressed the opinion that the first scan should be done about 3 months into pred treatment as it is felt the greatest loss of density happens up to that point and then bi-annually. You cannot compare subsequent results unless they were done on the same machine - as I say, the results are not absolute figures.
Yes my GP put me on AA at the same time as prescribing pred right at the time of diagnosis. I reacted badly to AA so asked to be taken off it, subject to a bone scan. It proved normal, so I have avoided AA since. I think it was a kneejerk reaction from the GP, and it helped me to realise that there has to be an element of self-management in my dealing with PMR. So my advice is don't be bullied!
Hi Bagshaw, I am new to this site, but it is full of fantastic info! I was diagnosed with PMR last October 2014. Given 15mg/day prednisolone and told to decrease by 1mg each new month. Also given AA two weeks after started the pred. However I thought I had increased muscle/bone pain after a day after I took it. I tried again two weeks later to see if it happened again. I thought it did so I told the Doc. She said lets sort the PMR pains out first and then we will think again about the AA, but am not taking it at the moment. I am interested to know what was your bad reaction to AA.
Some more info - when I got down to 13mg pred, I caught a cold and I really started to get the PMR pains back again, so the Doc. said Go back 15mg for one week and then take 14mg for six weeks and then go back for a check up. Now even at 15mg I am getting early morning pains and have to get up about 4am because I can't sleep. O hell!
I was prescribed AA but couldn't take it so after much complaining they decided to allow me to have Ibondranic Acid which is taken once a month and so far after taking it for 6 months has caused me no problems. It costs an arm and a leg apparently which is why the doctors don't like giving it to you. Wendy
I suppose it depends what is construed as an arm and a leg. One month's supply of alendronic acid is about £5.50. One month's supply of ibandronic acid is £23.
In the great scheme of things, if using ibandronic acid leads to fewer side effects and better compliance it is worth the extra - after all, you aren't going to be on it for life!
My GP prescribed alendronic acid but I haven't taken it after reading about the research. I did need dental treatment [removal of an infected root canal filling] soon after diagnosis with PMR and when I told my dentist that I hadn't taken AA he seemed relieved and said it could have been 'fun'! if I had.
My doctor's been keen for me to take it but has now agreed to a bone density scan which I had today. She was reluctant to refer me for a scan because, she said, it wouldn't alter her advice to me. However she accepted the argument that it could affect how I respond to her advice. I'm eating seeds and fish and going for walks as well as taking calcium and Vit D so am keeping my fingers crossed.
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