Hi there,
I've read a few posts where fellow sufferers are stopping their AA. Can you tell me why, how long into taking it before stopping and what are the side effects of taking this drug or what are the risks if we don't take it? I'm + 8 months since PMR confirmation (no GCA) and on pred (down to 8mg now) and weekly AA.
Many thanks! Happy Valentine's Day to you all. x
Hi MrsMac03
HeronNS has a great knowledge of AA & l think she lives across the pond so will be awake later than us.
I'm between a rock n a hard place with AA/ZA as I've had Breast Cancer & the Oncologist want me to have it as Zolendronic Acid to prevent recurrence in the bones!
I'm not due another transfusion until after my holidays, so it has to be on the back burner until after that! I cannot worry about what has gone!
Happy St Valentines Day to You too! 💕
Mrs N
PS HeronNS is from Canada 🇨🇦
Hello Mrs Mac03,
I see you have a had plethora of replies so feel free to ignore mine if it's already been covered.
I had been on another 'bone saving' medicine for around 2 years, after a Dexa scan showed an already high level of osteoporosis. I think it was called Strontium. I was then taken off it because "there had been a few reports of association with heart attacks" - I already had a heart condition. I was put on AA at that point. It was then decided, at a rare appointment with my Rheumy, that I should come off that too because I don't think it was making much difference and now have Prolia injections every six months . Am about to have my fifth one. This has all been in the 6 years I have been on Pred for GCA. I had no reaction to any of them. I am very lucky in that respect.
I have a love/hate relationship with the steroids, which definitely have produced side affects and I seem unable to get below 5 a day still.
With best wishes, mega
Hi mega and thank you so much for taking the time to comment here. I'm seeing my GP later today to ask for a dexa scan...I've only been on the AA since August last year and am now down to 8mg preds. although suffering big time tonight due to over exerting myself doing some housework yesterday ( who knew eh?) hence why I'm up at silly o'clock unable to sleep due to severe shoulder pains...grrr.... I'm very lucky in that I have a very understanding GP who's willing to look at all the options (unlike my rheumy who although excellent didn't give me any choices when it came to dishing out the drugs.)
I'm absolutely hating the side effects of the preds too ( weight gain, constant as in almost permanent headaches ) but I've made a deal with myself to get to 1 year then see how I'm doing.
Thank you again for your comments.
Blessings,
MrsMac03
Have you tried a low carb approach? That does often help the weight problem - and taking sugar out of the diet also helps the inflammation. It might even help the headache - surprising what you can achieve by removing things!
Thanks PMRPro! I am a dreadful carb junkie!! I have tried twice before to take out the carbs ( loooong before PMR raised its ugly painful head ) and yes I lost >20 pounds over 6 months but the second time I tried to go carb free or significantly reduced carbs I suffered dreadful evil headaches so only lasted 2 weeks. I know it's withdrawal I need to get through and yes I've looked into the reducing sugar thing too..... Soon as I stop feeling sorry for myself I'm going to really give it a try....honest!!!
Thanks x
If you go straight from carbs to no carbs, you will have withdrawal problems! Take a few weeks to do it and it is easier if you can't face the flu for that first couple of weeks...
Mrs Mac
I've cut down on my sugar by 60% over the last four weeks & lost 4lb & I 'trade' my Carbs, lunch or dinner. Personally, l think it's mad to go from one extreme to the other, so slowly goes it for me & I'm happy. I've tried to give up sugar many times but never been successful but l'm happy with how this is going 💁🏻
Best Wishes & small steps are the way forward! 🌺
Mrs N x
I have been put on AA by 2 Rheumy's, after being told that Pred. "takes your bones" and "you don't want a fracture of the spine do you?" this last by an eminent Professor. After reading about it on this forum, I asked the Rheumy for a DEXA scan to check what my bones were like. He refused and so my GP did it for me. After 1 year on Pred. my bones were fine . The second time I took the AA, I started getting serious pain in my hip and, since one of the side-effects of AA is fractured femur, I stopped taking it and the pain stopped. I had another DEXA scan last year, 3 years after Pred.and my bones were the same if not a bit better. Because of the nasty side-effects, and my good DEXA results, I will not be taking AA.
Interestingly, in the Rheumatologists' guidelines, you should have certain risk factors before taking AA, of which only taking Pred. applied to me and the guideline was to take ADCAL and having DEXA scans.
Have you had a DEXA scan to suggest that you need AA? If not, my advice is to get one and to go from there.
No - not been offered a dexa scan... Not seeing my rheumy doc again until July...should I ask my GP for one in the meantime? Thank you
Definitely, yes.
I have been on Pred for 17 years and was told to take AA however before taking it I had a Dexa scan and all was OK and was told "no treatment necessary" I have regular scans, and take Calcechew just one a day.
Hi MrsMac03 ,
There are varying views on AA. I would agree with others, don't take it if you don't need to, but you need to check out the state of your bones first!
I was susceptible to osteoporosis, early hysterectomy, family history etc and as I started at 80mg - late diagnosis of GCA - decided to take it.
I took it for 4 years without any problems either in actually taking it or side effects - I may just have been lucky!
In the paperwork it does suggest giving it a break (no pun intended) after 5 years, so at the 4 year mark discussed with GP, who agree that that it had done it's work, and as I was around the 2mg dose of Pred it would be okay to come off, so I did.
The main reason to take it, is to prevent osteoporosis, but in some people it seems to make their bones less stable rather than stronger, leading to fractures.
If your bones are okay, weight bearing exercises, good diet and VitD & Calcuim tablets will probably suffice. But each of us is different, so glean as much info as possible - and then make up your own mind.
This is one recent conversation about using AA
healthunlocked.com/pmrgcauk...
and this is a follow-up to it:
healthunlocked.com/pmrgcauk...
and there are others. Between them I think they answer your question.
Yes, you must have DXA scan before agreeing to any medication. As I've said elsewhere there may be a case for the bone meds if results are dire, but the way doctors are prescribing them as preventative medicine, without even checking whether they are really necessary, I think will one day be looked on as a form of malpractice.
I think even if you take the meds it's a really good idea to do all the natural things as well, the appropriate exercise, diet and supplements, so that your body has all the tools it needs to build healthy bone. Who knows, maybe that will even help guard against possible bad side effects from the drug?
It has been shown through research that micronutrients can help improve bone density. Other things which help are weight bearing exercise, as simple as a good walk every day, tai chi, Nordic walking, some kinds of yoga and pilates. And some supplementation which has to go beyond the requisite calcium + D3. Most things will be available from a well-balanced diet, but to be on the safe side you should consider a Vitamin K2 supplement as K2 (not K1) is usually deficient in the average Western diet, and also a bit of extra magnesium may be a good idea to balance any extra calcium you may be taking. K2 and magnesium help make sure calcium is absorbed into the bones where it belongs, and not deposited in organs or onto the walls of blood vessels where it causes damage.
I should add, although most people on the forum already know this, I've successfully moved my bone density from -2 to -1.6 in one year. I had three risk factors and was highly recommended AA: previous fracture (although I don't believe it was a "fragility" fracture), age and prednisone. I was at a dose of prednisone still over 5 mg for over half the year between first and second scans. The new recommendation is for no bone meds, and another scan in three to five years. My doctor was quite amazed and asked me how I did it! My inspiration was a friend who had started out at osteoporosis level, unlike me who was "only" osteopenic, and has been successfully improving her bone density for a number of years. She tells me she feels the exercise which helps her most is Nordic walking. Neither of us rely on milk for our dietary calcium. I eat cheese and yoghurt, and drink kefir and use milk in tea, but I probably get most of my dietary calcium from vegetables.
Thank you - such helpful and informative information, thank you for taking the time to reply.
When my doctor told me (mistakenly as it turned out) I had osteoporosis I was completely freaked out and read everything I could lay my hands on, as well as reaching out to friends like the one mentioned above. Like PMR it was never something on my radar. What I did know was I couldn't handle any more major medication - pred was more than enough!
Where do you get kefir from? I've not found it in the uk.
Goat milk kefir is available from "The chuckling goat" a small farm close to me in West Wales. Take at look at their website. I am taking Yakult in the morning, it is also a fermented probiotic product. I have been reading this post with great interest, being also anxious about AA.
I've seen it in Eastern European and Middle Eastern grocers, much the same price as ordinary milk.
You can buy the kefir starter culture online eg ebay, but since 'Trust Me I'm a Doctor' featured it a couple of weeks ago, some places are 'out of stock' until they've cultured more! Shop around, as the prices vary from £3 to silly money. Once you've made the first batch, you can continue to use a small amount to start the next batch. My sister, in London, has had her culture going for years! She puts seeds into some kefir overnight, to swell up and then adds a spoon of stewed fruit in the morning and that's her breakfast!
She also ferments tea into kombucha and drinks a glass every evening.
I'm visiting this weekend - perhaps I should come home with some starters!
If you are in London, I'm sure she'd give you some of her kefir 'grains' - send me a message, if so.
With each new referral I went to it always meant more meds.. So when I finally lost it about the GCA n PMR and all the doctors and meds...
well what I did was make an appt with my favorite out of 7 docs and asked her two things..
Can you take care of me by yourself?. She said Yes..
then .... Can you help me decide what medications I have to take?
I left with HALF the pills I went in with and aldronic was one of the dropped meds. 2 other B/p meds were cut down to half dosage.
I did take back the ranitidine and take it once a day no more acid in my throat..
I shared all that because I could....😎
Advice: You know you the best so listen to what your body says.. get a dexi scan🐞
Hi
I stopped taking AA after three months when I noticed that my hair was falling out. As soon as I stopped it slowly grew back. The doctor was not surprised! I now have Calcichew once a day. I would dearly love to do more weight bearing exercise but as I am currently having a major flare and have had to up my pred to 33, the fatigue takes me over most days. I have a hospital appointment on the 28th Feb so will ask about a dexa scan amongst other things.
If you look back you will see I posted a comment on AA some time ago. I took it for osteoporosis for 6 years and suffered a fractured femur as a result. The surgeon who did the operation to insert a steel rod in the bone wrote in his report 'fractured femur bisphonate (AA) related'.
Just thought I would advise that you can get Kefir from Waitrose.
Alendronic acid query
Alendronic acid and dental wirk
