Alondronic Acid: Hi all - hope you’re staying... - Vasculitis UK

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Alondronic Acid

PaddyPop profile image
26 Replies

Hi all - hope you’re staying safe and well!

I’m now down to 0.5 mg Pred daily and was due to stop completely this week but have decided to carry on until next blood test.

I’d be interested to hear if anyone on Pred and taking Alondronic Acid was able to give up the Acid once they came off the Pred?

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PaddyPop profile image
PaddyPop
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26 Replies
Cookyboy1 profile image
Cookyboy1

Hi paddy pop, At the moment I'm still on 10 MG of pred, have been working my way down from 60 MG over several weeks, as directed by my doctor, I have just over 1 more week on 10mg then have to take 10mg then 5mg every other day for a week then going down to 5mg, Not sure that that's where I'm going to be from then on or if I will have to keep taking the androlic acid tabs but will e asking that question to my doctor as that time approaches, didn't answer your question but I suggest you do what I am going to do, Ask the professionals, 🤔👍

PaddyPop profile image
PaddyPop in reply toCookyboy1

Thanks for replying.

That’s quite a steep tapering - how are you coping with that? I only reduced the daily dose by 1 mg per month between 10-5 and the 0.5 mg per month. Has your consultant mentioned that your adrenal gland will have to wake up at 3 mg so take tapering easy around then?

I’m self isolating with my daughter in Norfolk and am supposed to return to London in May for consultant appointment and MRA - really a little worried about that!

Stay safe and well!

Cookyboy1 profile image
Cookyboy1 in reply toPaddyPop

From christmas I was on 60mg for 2 weeks then went down to 40mg for 4 weeks then 20mg for 2 weeks then 15 for 3weeks now on 10mg , might have missed out on a week somewhere there but was wondering why you go to lo Don and not addenbrooke's as it must be nearer to you living in Norfolk,?

PaddyPop profile image
PaddyPop in reply toCookyboy1

I actually live in London but I’m with my daughter in Norfolk.

I was diagnosed privately - my GP put in the referral letter I had a slight cough and a sore throat. I actually couldn’t speak with out coughing and got to the stage where I could not lift my arms above my head! Diagnosed with Takayasu Arteritis and now my GP is extremely helpful.

Typically private cover pulled with chronic condition but my consultant recommended Prof Mason at The Hammersmith and I was lucky be accepted by him.

Hildalew profile image
Hildalew in reply toCookyboy1

Welcome to this forum.

I'm guessing that you haven't been 'signed up' for very long. If you stay with it for a while, you will find that on here you will be able to see a wide range of experience and advice from people who have PMR and/or GCA. Among that will be descriptions of a wide, wide range of experience with the 'professionals'. Some of it extremely good, some of it is surprisingly wide of the mark.

You will also find that none of the 'advice' on here is prescriptive - as it says :

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

With something as valuable as my health, I always read as widely as I can about anything that I am worried or curious about. As with ALL such things, I see very convincing rubbish as well as really good stuff - the more I read the easier it becomes to tell the good from the bad.

The subject of Alendronic Acid is a complicated one - can I suggest you take a look at previous posts on the topic before you see your doctor. Reading what people have to say can do you no harm and may make your conversation with them more enjoyable.

PaddyPop profile image
PaddyPop in reply toHildalew

Hi thanks for your reply.

I been on site since my diagnosis in 2017 and this is my go to site for info and if I have any questions.

I’ve noticed that some of the people I shared with over the past are not longer commenting and I am hoping they are still well.

Stay safe

Hildalew profile image
Hildalew in reply toPaddyPop

Apologies - my comments were actually directed at Cookyboy,

I thought your question was perfectly reasonable! I was frustrated by his action of using the forum to question your use of it and to suggest that he wouldn't use it!

PaddyPop profile image
PaddyPop in reply toHildalew

Not a problem. I think with all these drugs we wish we didn’t have to take them! This forum is very useful to see how other people fair with the different drugs and discuss concerns.

Stay well and safe 👍

PMRpro profile image
PMRpro

I gave it up after 4 doses while still on pred - and after 7 years on pred ny dexascan was hardly changed. Am due another one now but Covid-19 put the mockers on that.

PaddyPop profile image
PaddyPop in reply toPMRpro

Thanks for replying.

Just want to get off the Alondronic - I need a route cancel treatment and my brilliant dentist couldn’t do it without consultant’s consent. Obviously can’t have it now anyway!

Stay safe and well

jgold profile image
jgold

I was on azathioprine, plus short spells of pred as and when the vasculitis flared. My consultant ordered a bone scan, which revealed osteopoenia (less serious than osteoporosis). He put me on alendronic acid, 70mg weekly. At the same time I switched from azathioprine to rituximab. Since then I have been off pred, except for one spell of 10mg for 11 days.

A second bone scan after twelve months revealed an improvement, but not enough to stop the alendronic acid. He then said he wouldn't order another scan until two years time - which will be December this year.

So - a mild bone deficiency, pretty well no pred, but taking alendronic acid for a minimum of three years. The alendronic acid is not causing any side effects - at least none that I'm aware of.

PaddyPop profile image
PaddyPop in reply tojgold

Thanks for your reply.

It’s the complications with the dentist and I don’t feel great after taking it but then again that could be the Mtx!

Stay safe and well

jgold profile image
jgold

Yes, I have a dental check-up every six months rather than once per year.

jgold profile image
jgold

Ah - just seen that you need a serious dental procedure. Sounds nasty - good luck.

PaddyPop profile image
PaddyPop in reply tojgold

I thought I needed a new filling but it turns out I’ve cracked the tooth down into the gum with my ‘ferocious’ bit (dentist’s description) and need a route canel! I don’t even know if he would be allowed to do it when dentists open again!

Mooka profile image
Mooka

Hi PaddyPop

I have stopped the adronic as soon as I stopped taking the pred both times I’ve been on it. I think the consultants like you to have a dexa scan to see if your bone density has been affected If it has I think you have to stay on it. But that is in the ideal world not the one we currently live in.

PaddyPop profile image
PaddyPop

Thanks for your reply. I’m due a consultant meeting in May so I’ll check it out then

Loll1pop3 profile image
Loll1pop3

My husband has been on Pred for 3years, in varying amounts. The Rheumalogy Dept have never suggested my husband stops taking Alendronic Acid even when on a low dose of Pred and have never asked him to reduce Pred so much so that he comes off it altogether. Whereas the Endocrinology Dept wanted my husband to taper the Pred and come off it altogether but again, no one said to stop Alendronic Acid. In fact our Prof at the Nuffield Orthopaedic Dept Oxford doesn’t want my husband to go below 10mg Pred during this Covid -19 situation. He wants my husband to remain well and maintain his appetite.

PaddyPop profile image
PaddyPop

Thank you for replying.

My consultant knew I was tapering so I just carried on

Stay safe 😘

LindaMRich profile image
LindaMRich

Hi Paddypop, i'm also keen to be off Alendronic Acid. I have been on it since diagnosis in 2015. I have been 'pred free' since May last year. I have GpA & my consultant suggested I have a repeat DEXA scan in a year's time before stopping AA. Hope your dental treatment goes well, when it happens! Keep safe.

PaddyPop profile image
PaddyPop in reply toLindaMRich

Thanks for the reply.

Congrats at coming off Pred. I thought all was going well but I am now very achey - next blood tests will be interesting!

I am going to have to ask about bone density because I don’t think it has ever been tested!

Stay safe

PaddyPop profile image
PaddyPop in reply toLindaMRich

Just as a matter of interest - what does a Dexa scan involve?

LindaMRich profile image
LindaMRich in reply toPaddyPop

Re: tapering prednisolone - 5 mg This is the point at which I developed aches & pains, looking much older than my years and very sore. Taper exceedingly slowly - there are tips for this on Vasculitis UK site - I went 0.5mg per fortnight then 0.25mg for the last 1.5mg. It takes time but really works. (The trick is not to get disheartened if you have to go back up a stage for a while, to start back down and I have heard that some people don't come off pred completely at all), I count myself as lucky for having done so. A Dexa scan is (if I remember) a series of measurements and a scanning machine is run down your body length from above. It takes a while to get the results.

PaddyPop profile image
PaddyPop in reply toLindaMRich

Thank you for your reply.

I’m down to .5 mg daily and to date haven’t felt too bad but now I’m feeling really achey! I have never had my bone density checked - I was just given Alondronic Acid because I was on Pred!

Will have to check this out if the madness ever ends.

Stay safe

Pollie profile image
Pollie

Hi...I was taking Alendronic Acid for about 9 years whist also on Prednisolone. I can only repeat what others have said about "asking the professionals" about how a reduction in Pred will affect your dose. However...I was told that, whatever your bone density situation, you should NOT take Alendronic Acid for more than about 8 years...so you should clarify this at your bone density clinic. There are other preparations you can take, if your bone density requires attention.

Hope this helps!

PaddyPop profile image
PaddyPop in reply toPollie

Hi thanks for the reply. I’ve never been to a bone density clinic! I’ll definitely ask consultant when we speak next.

Stay safe

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