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?
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, 🤔👍
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!
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,?
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.
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.
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
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!
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.
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.
Yes, I have a dental check-up every six months rather than once per year.
Ah - just seen that you need a serious dental procedure. Sounds nasty - good luck.
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.
Thanks for your reply. I’m due a consultant meeting in May so I’ll check it out then
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.
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.
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
Just as a matter of interest - what does a Dexa scan involve?
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.
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
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!
How long does it take for improvements to be seen following treatment for CSS?
Ritixumab does it work on pan?
Prednisolone tapering causing rash?
Sinus getting me down
