Alendronic acid query

[Coco63]

Hi All, apologies if this has already been covered, but since being diagnosed with PMR 3 months ago, I was automatically prescribed alendronic acid, but thanks to all the helpful info here, I also requested a Dexa scan which came back as ‘normal.’ I am also taking Ad-cal and magnesium and want to include vitamin K2 when I can find some(!), and also have a lot of eggs/cheese/salads in my diet. I’m obviously keen to avoid taking anything that might not be necessary, so is there any point in continuing with it?

[Koalajane]

I certainly wouldn’t take it if your bone density is normal. I get my k2 from a company called Health4all

[Coco63 in reply to Koalajane]

Thanks so much koalajane and for the k2 tip!

[Linny3]

If you decide not to take it, make sure you keep up with your dexa scans. You don't want thin bones to creep up on you. Good Luck

Sorry you had to join the pmr club but you are in the best place for info and help

[Coco63 in reply to Linny3]

Haha yes, not a club any of us wanted or expected to join - but as you say this is a great place to be for info! I had it in mind to ask for another dexa scan in a year or 2 but not exactly sure what the norm is.

[jinasc in reply to Coco63]

Recommended in the BSR Guidelines on Diagnosis and Treatment for both PMR & GCA. Dexa scans: the first one at 6 months of starting pred and then at 2 yearly intervals.

[Coco63 in reply to jinasc]

Ah great thanks for that

[Coco63 in reply to jinasc]

Thank you, that’s helpful to know.

[Linny3 in reply to Coco63]

Insurance companies are all different. Because I am on pred. my insurance pays for a yearly dexa. I am on a new program , algae cal and serontium and I am going to ask for another dexa in Decembe,r which will be under a year since last one. Algae cal claims that I will see a difference in my bones in 6 mos. I don't want to wait a year to see if it is working or not, so I want one at the 8 month mark, even if I have to pay for it myself.

[Coco63 in reply to Linny3]

Thanks linny3, the algae cal looks good, I’d be interested to know how you get on with that. Presumably you take that in place of Adcal-D3?

[Linny3 in reply to Coco63]

I take 2 algae-cal in the morning and 2 in the afternoon. Then I take 2 serontium late day on an empty stomach. I also take extra d3 and k2.I like this program. This is the first supplement I have ever purchased where they actually do follow up to see how I am doing and to answer any questions. They gave me info about calcium that I wasn't aware of:, and that is to not take any extra calcium along with this program. Too much calcium keeps you from absorbing the calcium that is needed. A days Calcium should not be taken all at once, but spaced out thru the day.

[Marijo1951]

I buy combined vitamins D3 and K2 capsules from Nature's Best:naturesbest.co.uk/vitamins/...

[piglette in reply to Marijo1951]

What about the calcium for your bone density?

[Marijo1951 in reply to piglette]

Yes, I also take Nature's Best Mega Mineral Complex, but Coco63 only asked about vitamin K2.

[jinasc in reply to piglette]

I stopped Calcium when I ran into Pseudo Gout and grit in the gall bladder, caused by too much calcium. I would advise you ask for a blood test to specifically cover all minerals.

I still take Vit D every day.

[Coco63 in reply to jinasc]

Sorry, just reread this re the calcium!

[jinasc in reply to Coco63]

Don't worry we all do it at times.

[DorsetLady PMRGCAuk volunteer]

K2 mk7 is best -Zipvit good -zipvit.co.uk/vitamin-k2-mk-...

[Coco63 in reply to DorsetLady]

Do you also take magnesium with that? Just about to order the K2 mk7

[DorsetLady PMRGCAuk volunteer in reply to Coco63]

On and off - usually take it for a few months and then have a break for a month or two.

[Coco63 in reply to DorsetLady]

Ok that’s great, thanks a lot.

[piglette]

Personally I would tell my GP that I would not be continuing the AA as the Dexascan showed I did not need it. Vitamin D with calcium is important and also a good diet.

[Coco63 in reply to piglette]

Yes, thanks piglette I will be letting him know. I don’t really understand why it was automatically prescribed without determining whether it was absolutely necessary?

[piglette in reply to Coco63]

My GP is always trying to get me to take AA even with my excellent Dexascan. He has read that people on long term steroids should take it. I have been having fights with him since 2016.

[Coco63 in reply to piglette]

Oh gosh! I hope mine is more agreeable.

[piglette in reply to Coco63]

So far I have won on the AA front with my GP. The only reason he has for me taking AA is that I have been on steroids for a while.

[Coco63 in reply to piglette]

Ah I see 👍

[jinasc in reply to piglette]

I did not 'battle' with either my Consultant or GP.

Mind they both had sent me for the Dexa scan, but after the 'grit' problem. I stopped all 'add ons' and the argument followed so I just said I have listened to you and made a decision which is "my body, my decision".

I do not advocate any one follows what I did. Just keep it in the back of your mind that once you have explored and digested and understood the information. Just remember those words if they do become necessary.

[Koalajane in reply to Coco63]

It seems to be the way of things. I just stopped taking it and was waiting a battle with my doctor. It didn’t happen as my first dexascan showed very mild osteopenia. My next one showed my density to be normal.

[Coco63 in reply to Koalajane]

That’s interesting.

[Koalajane in reply to Coco63]

My doctor had a report saying that I was to have another dexascan in 1 year time and to carry on taking d3 and calcium and walking.

[Coco63 in reply to Koalajane]

Ok, that seems fair.

[PMRpro Ambassador]

I wouldn't - especially not if the classification was "normal" as opposed to "osteopenia" - but do get it checked in a couple of years, just in case. What were your t-scores?

They hand it out automatically because they assume that at our age we will be at least osteopeneic and that it is inevitable that the bone density will go down. I was osteopeneic but not at a level that required intervention and after 11 years on pred, a lot of it above 10mg/day I have a slightly lower bone density but still not at a level that needs bisphosphonates.

I now make sure there is enough calcium in my diet and take 4000 IU vit D a day. I stopped calcium supplements because, like jinasc, it was causing problems, bladder ones for me. But enough vit D is crucial and K2 almost certainly helps a lot. magnesium is important too.

I expected a fight with the local osteoporosis specialist because my bone density was lower last September than the previous time when she was saying she needed to think what to do - I told her not to bother too hard, I wasn't taking a bisphosphonate yet! This time she just looked at the result, said she had never seen such a good result in someone on pred, never mind long term like me, and just keep on doing what I was doing!

[Coco63 in reply to PMRpro]

That’s brilliant PMRPRO, thanks for yet another very informative answer! It’s great that your bone density is still so good after such a long time on pred. 👍👏