Alendronic Acid and drugs to help pred reduction

[Animalover65]

Hi , I was prescribed Alendronic Acid when I started taking Prednisilone in March 21. My dexa scan showed -1.9 in the hip and -2.1 in the neck. And as a woman age 65 I guess that makes it important to protect my bones. Do most people take AA or opt for alternative options? My Rheumatologist seems to be of the opinion that AA is the best option. I an due to see the Rheumatologist in a month and i have got down to 6 mg of pred and i did feel quite wobbly moving down from 7 to 6 mg although OK at the moment. He suggested not reducing by half a mg - reducing by 1 mg and considering other drugs to assist the reduction. I have the feeling I would rather stick with the devil I know.

Would appreciate your thoughts.

[DorsetLady PMRGCAuk volunteer]

Your readings show osteopenia ... and doesn't necessarily mean it will develop into osteoporosis.

Maybe have a look at ROS site - theros.org.uk/

I was on AA for 4 years, because I required it, but it doesn't suit everyone... and there are options...

Also have a look at FAQs -

healthunlocked.com/pmrgcauk...

[Animalover65 in reply to DorsetLady]

Thank you. That's helpful.

[PMRpro Ambassador]

I haven't taken anything except originally calcium and vit D - I took a few AA tablets but hated them and did a lot of homework including speaking to a different GP. We agreed to wait until I had the dexascan results and then review as he agreed with me that it was beginning to emerge they weren't the claimed wonder drug. My dexascan scores were far better than yours and have remained so,

Why add in another drug to "help" the reduction? They don't come with guarantees they will get you to a lower dose of pred but they do come with potential adverse effects. Use the search function to look for posts on methotrexate or leflunomide within PMRGCAuk - don't search all forums because they are both used a lot in RA so you will get hundreds of listings. They can both be very unpleasant - although methotrexate works very well for a small proportion of patients and so does leflunomide but they need to be kept for the patient who struggles to get the pred under double figures. Not for the patient who has got to 6mg in well under a year (the median time to 5mg is 18 months, you are well ahead of the curve). From here you have two limitations: adrenal function and PMR so it can be a tricky balance.

[Animalover65 in reply to PMRpro]

Thank you. thats very helpful.

[jarn in reply to Animalover65]

Heed the responses of both Dorset and PMR people. Seems the rheumies like to prescribe AA as did mine, but when I told her I didn't like what I read about it, she wasn't happy but let it go. You need to make those decisions and the advice you read here, is solid.

[Animalover65 in reply to jarn]

Yes you are absolutely right. Thank you

[pammy_hyland]

I did manage to get down to 4 mg but never any further so I've been on 4 as a maintenance dose for years now (but I had to fight for that) and therefore don't need the AA after 5 ..It did make me feel ill the day I took it but I do think its for the best and it looked after my bones well...xx

[Animalover65 in reply to pammy_hyland]

Yes its important to look after our bones. That's good to know its not needed after 5 mg. xx

[DorsetLady PMRGCAuk volunteer in reply to Animalover65]

Actually not sure that pammy_hyland comment that at under 5mg a bisphosphonate is not needed is strictly true - some studies show that a dose as low as 2.5mg may still cause issues as this link from ROS shows. It probably depends on individual cases.

theros.org.uk/information-a...

[Animalover65 in reply to DorsetLady]

Thank you Dorsett Lady

[Jackoh]

Cannot understand why your Rheumatologist wouldn’t want you to decrease by a half each time but suggests another steroid sparer to help you. I have been going down by a half since I reached12 mg. I am now on 7.5 going down hopefully to 7mg. My Rheumatologist is quite happy with that. It also helps your body adjust. As long as you’re on ordinary pred ( not the coated variety) you can cut it quite successfully with a pill cutter from A. 💐

[Animalover65 in reply to Jackoh]

Yes it is easier to adjust to half a mg especially at lower doses.

I will discuss it at my next appointment. thank you

[Daffodilia]

I take AA - follow advice of GP as I trust him

[Animalover65 in reply to Daffodilia]

Thank you.

[Sharitone]

If you reduce by 0.5mg, you have a greater chance of success, and if you sail though it, you can always go the other 0.5mg two weeks later... or three, if that suits.

You may want to find out what the steroid sparer is that he is considering so that you can research it before you have to make your decision.

You may well need the bone protection, but you have to look out for stomach too, and AA is rough on it. I was switched to Denosumab for that reason.

[Animalover65 in reply to Sharitone]

Thats really helpful. Thank you

[Deyazlex]

hi, had DEXA scan (requested by me) result was ‘satisfactory’ but surgery texted that female doc just needed me to contact to discuss! Finally spoke to doc (man) who didn’t elaborate other than to notice I had been on AA since diagnosis 5+ yrs ago. He suggested I stopped taking it as it is ‘not a nice medication’ , thank you….. but to continue taking the cholecalciferol chewable calcium tablets. (Luckily the AA hadn’t had an adverse affect on me). Follow up DEXA in three years. Fingers crossed I don’t have to go back on them. My best wishes to you all xx

[Animalover65 in reply to Deyazlex]

Thank you, its so helpful to share our experiences and information.

[jenerino]

Had AA for quite a while but it caused huge heart burn and I rejected it. I do take K2 MK7 every day to keep bones strong. No side effects and worth looking into.

[Animalover65 in reply to jenerino]

Thank you, its good to know there are other options.