Alendronic acid

[Iloveholidays]

Firstly I want to say I don’t know what I would have done if I hadn’t found this forum, I am learning more and more every day about PMR, thank you to all that contribute everyday. I have posted once before. I am now 4 weeks in from diagnosis, started on 15mg pred for 3 weeks and reduced to 12.5mg for one week and so far so good (with everything crossed) ! I don’t have any PMR pain but I do get some twinges and some restless leg type feelings in my legs. I am able to do my daily activities and I work 3 days a week which I do find tiring but I get lots of rest on the other 4 days.

When the specialist GP diagnosed PMR he said I need to take a bone protector, after reading various post on here I asked for a bone scan before I started to take it, he said I didn’t need it, I needed to take the drug regardless of whether I had any osteoporosis or not and that my GP can prescribe it for me. I then saw my GP, who I had no confidence in regarding PMR, she did my repeat meds, I asked her about a bone scan and said to her surely it is better to know my bone density before I start on the Aldronjc acid, she said I could have a scan and referred me, she explained how I should take the Alendronic acid, but didn’t say whether I should start taking it straight away or wait for the scan. She gave me prescription for the pred etc.... but not the Alendronic acid but added it to my repeat prescription, so I am confused on what to do. I still haven’t taken it, am I doing more harm to my bones or is it better to I wait until I have the scan? I don’t know how long I will have to wait for it. I get the impression from reading on here that not everyone takes the Alendronic acid? I am 60 and before PMR was in good health leading an active life. Any advice would be much appreciated. Thank you

[SheffieldJane]

Firstly, tryMagnesium for the restless legs. Personally, I would not take a powerful drug with potentially serious side effects unless my bone scan showed advanced osteoporosis. As long as you take vit D, K2 and a Calcium supplement and do some weight bearing exercise, then you should retain your bone health. These supplements should be on your repeat prescription . I have had two fine Dexa scans and still resist the relentless pressure to take AA. Quality of life matters too.

[Iloveholidays in reply to SheffieldJane]

Thank you Sheffieldjane, I take calcium/vit D as prescribed by GP but not K2, should GP give me that also? I will get some magnesium is there a recommended dose? IAre the restless legs to do with the steroids or the PMR?

[SheffieldJane in reply to Iloveholidays]

Actually I bought the K2 as recommended on here and the Magnesium dose as recommended on the bottle. Cramps and restless legs stem from a deficiency in Magnesium. Not sure if we can lay it as PMR/GCA or Pred’s door. Diet and our age will be factors too.

[Iloveholidays in reply to SheffieldJane]

Ok thank you I’ll Get both of those

[PMRpro Ambassador in reply to Iloveholidays]

You won't get K2 on prescription in the UK or many other supplements except the calcium/vit D ones because you are on pred.

Restless legs can happen anyway - not specifically pred or PMR.

[Daisychain12 in reply to Iloveholidays]

Hi! Vitamin k2 is vital. You can find it in any good chemist or pharmacy. It helps stop calcium buildup in blood vessels where it could cause harm and helps it go into bones where it is needed. Xxx

[Iloveholidays in reply to Daisychain12]

Thank you, you are so knowledgable x

[Marijo1951 in reply to Iloveholidays]

I wouldn't have known about K2 without this forum. As it ensures the calcium goes to the bones (where we want it) rather than to the arteries (where it can have nasty consequences) I really don't understand why it isn't prescribed alongside the other supplements.

[Suffererc in reply to SheffieldJane]

What in your opinion are the potentionally serious side affects. I have AA prescribed but have stopped taking it. My GP asks why and I don’t feel I have the answers. I want to have a bone scan

[PMRpro Ambassador in reply to Suffererc]

Wanting a bone scan will do for a start - bone scan, then we'll discuss it. If I need it - that is another matter so show me the proof...

[PMRpro Ambassador]

I took 4 AA tablets before discussing it with a GP who agreed with me that it was better to wait for the scan result. It was fine (a t-score of -1.1) and over 7 years later my dexa result was still fine with a t-score of -1.3. I never took another AA tablet - just calcium and vit D. Loss of bone density is NOT inevitable and even if it happens if the baseline is like mine was it still may never reach a problem level. Once you start AA you may meet dentists who won't do things because of the AA history.

For the moment I would be seeking clarification of the state of your dental needs in the next couple of years - anything major should be dealt with before you start AA. That will delay any fight with a doctor. And when will you get your dexascan?

AA with osteopenia that is bordering on osteoporosis is another matter - but you need to have your dexascan first.

[Iloveholidays in reply to PMRpro]

Thank you, I am learning so much!

[DorsetLady PMRGCAuk volunteer]

Hi

I took AA for the best part of 4 years with no apparent problems, and for good reason, but it’s a drug that does arouse a lot of discussion on here, mostly anti it would appear.

It is in some of the guidelines to prescribe alongside Pred, but why add in another drug if it’s not really required. Request a DEXA scan as others have suggested.

[piglette]

My Dexascans have been fine although one GP seems very keen on Alendronic Acid, his reason being that I have been on steroids for a while. I said that if I had a bad Dexascan I might consider it.

[Koalajane]

My doctor prescribed AA along with the prednisolone. I took 3 tablets and then got a phone call from the doctor saying don't take any more until you have been to the dentist. I then started researching it and did not take any more. Recently another doctor at my practice said I should have a bone density scan which I had. I went back to see yet another doctor for the results ready for a heated discussion about me taking the AA. I was so relieved that the results showed that I only have very mild osteopenia and the recommendation was that I carry on with the vit d and calcium and have another scan in 12 months. Also that hopefully I will be down below 5mg of prednisolone. I am on 5.5mg after nearly 2 years of taking prednisolone so am hopeful that I will be down below 5mg by then.

[ClarkB]

I think you have enough good information from others on whether to take Alendronic acid, to come to a decision. I can only comment on my own . Despite having osteoporosis, diagnosed before I had Polymyalgia a year ago, I have not taken it. Some people take it without having problems, and it is simply another tablet to take. I bought a recommended book, ‘Your Bones’ by Lara Pizzorno, and there is a chapter on Bisphosphonates. I don’t want to try and influence anyone by my own decision, but it is worth a read, also read other material. If anyone is a candidate for taking AA, with my bone history it’s me. My decision, given my low bone density, may be foolhardy at this stage but I think it’s important you read up on AA and decide for yourself. I only wish that I was aware that I had osteoporosis, before it reached that point, but we don’t have routine bone scans until there is a problem.

[Iloveholidays in reply to ClarkB]

Thank you I will have a look at that book

[yogabonnie]

The book is GREAT. I would say do not take AA until you read. It is against AA. That being said a lot of people on this forum do take it without apparent consequence. I have refused it. I have some acid reflux and my father had esophageal cancer and it is very hard on your esophagus. (you have to STAND 30 min after you take it.! What??) Anyway look further on the forum HeronS has lots of good advice about weights and exercise that is good for your bones. I am taking an adult tap class. THE BEST for BALANCE BONES AND BRAIN! It is fun and silly but everyone is loving it, mostly old ladies! I already had osteoporosis BEFORE PMR so am waiting on the results of a new DEXA scan to see how much worse the prednisone has made me. The fact I have lost an inch in height this year doesn't bode well. BUT all that being said, I won't take the drugs. I maintain even thin bones can be flexible but the AA lays down a substance (not real bone) that is brittle. (NOT SURE ABOUT THAT) and I usually go with natural !! (except in the old days and birth control! haha) Good luck. This forum helps a LOT!! and if you are stressed..type in Relaxation and a link to my yoga exercises and big big last track relaxation should pop up.

[Iloveholidays]

Hi yogabonnie thank you, i will take a look. I walk and have just started Pilates, I want to get back to swimming too, I have been to the pool and walked and had a swish around so next time I will try gentle swimming, i’m Always anxious I will create the unwanted PMR pain!

[piglette in reply to Iloveholidays]

I go swimming a couple of times a week, I love it. If you feel pain just stop. If I have not been swimming for a while I do not go for gold to start with but slowly build up. My only problem is I am very competitive and try and beat other people in the pool it can be fatal!

[Iloveholidays]

Thank you to everyone that, all comments have been really helpfull and at the moment I am happy with my decision not to take AA yet. In the post today I received the aPpoinmrny for my Dexa scan, it’s 20th Feb so not too long to wait.