Can I drop AdCal as long as I'm taking high dose Vitamin D?

[maria40]

I saw my GP this morning and my markers indicate that my GCA flare is over - I certainly feel much better. Because I had kidney stones at the same time as the flare I stopped AdCal as calcium supplements were seen as a possible cause of kidney stones; I continued with high calcium diet and Vit D 2000i.u. GP thinks that I don't need to go back on to the AdCal but can continue with Vit D and high calcium diet. But the osteoporosis nurse whom I saw after my last Dexascan had been advocating return AdCal and possibly Prolia or similar. Any advice please?

[DorsetLady PMRGCAuk volunteer]

Although I’ve been off Pred for 3 years, I have continue to take ADCAL (susceptible to osteoporosis due to hysterectomy at 37 so also took A.A. for 4 years).

Had a DEXA last July and although normal was recommended to continue on Adcal but no need for anything else.

I would be more inclined to follow osteoporosis clinicians advice. Do you have osteoporosis?

[maria40 in reply to DorsetLady]

I don't have osteoporosis but my T scores have worsened in the last two years I would prefer to take AdCal rather than any bisphosphonates because I could stop that temporarily if the kidney stones return. I took Fosamax for a very brief time when I was first diagnosed with PMR and had bad oesophagal reaction so am very cautious.

[DorsetLady PMRGCAuk volunteer in reply to maria40]

In that case, stick with the Adcal.

[maria40 in reply to DorsetLady]

Yes, think that's what I'll do. Thank you.

[Gary1310 in reply to maria40]

I was taking large dose vitD, my GP advised me to stop for awhile, it had built up in my body. I do take Calcium &AA

[PMRpro Ambassador]

And what were the results of that last dexascan? By that I mean t-scores.

Did the osteoporosis nurse mention that once you start on Prolia you either have to continue indefinitely or switch to a bisphosponate after a few years?

[maria40 in reply to PMRpro]

Lumbar spine -2,1 L1-3; Hip - 2.5; Femoral neck - 2.2; Forearm -3.7 RT.

The nurse did mention the long term nature of Prolia and bisphosphonate which I have great reservations about and my preference would be for AdCal which I could at least stop if kidney stones recur.

[PMRpro Ambassador in reply to maria40]

You are supposed to need the adcal even on the bisphosphonate-type drugs. That forearm reading is the only really bad one though. Don't use your hand to catch yourself if you fall!

[SheffieldJane]

I had to drop it too because of cystitis symptoms mainly. My GP said it was ok to take Vit D, have a Calcium rich diet and I take Vit K2 and Magnesium. I eat a lot of oily fish too.

I think that there has been recent adverse publicity about Prolia - please check. How were your DEXA Scan results?

[maria40 in reply to SheffieldJane]

I'm suspicious of Prolia too, after hearing the reports. How long have you been off AdCal? Have you had any adverse effects?

My Dexascan results were worse than 2 yrs ago, but not markedly so, except for my forearm but as PMRpro advises I won't put my weight on it if I fall over!

[SheffieldJane in reply to maria40]

I have been off AdCal for about a year. The cystitis symptoms went and I haven’t noticed any adverse effects. I should be due another DEXA Scan in about a year ( every two years). My last two were better than average, fine and still the GP wanted me to take Alendronic Acid. The drugs have significant side effects and I don’t want to take them unless I really have to.

[maria40 in reply to SheffieldJane]

I agree especially something like Prolia with long term effects.. I feel much better at the moment; if I can manage without the Adcal I'd like to. I've ordered K2 online and will carry on the the D3 high strength.

[HeronNS in reply to maria40]

I think many places don't even measure t-score in arm. Certainly not where I live where it's only one hip and lumbar spine. They use the femoral neck measurement as the main one to determine need for medication and yours is not in the osteoporosis range. Time to do some work to improve those reading, though! Have you read my story?

healthunlocked.com/pmrgcauk...

[maria40 in reply to HeronNS]

That's very clear and helpful. Thank you.

[Koalajane]

I believe k2 sends the calcium to the bones so are you taking that?

[maria40 in reply to Koalajane]

Will get some this weekend. Are you recommending the normal K2 or K2N? I understand there's a difference.

[123mossie in reply to Koalajane]

I think only the menaquinone m7 version?

[Koalajane in reply to 123mossie]

Yes that is the one I take

[Thelmarina]

I can only give my own experience. I was badly affected by Adcal - indigestion, possible nausea. These cleared up when I stopped taking it. I take 1000 i.u Vitamin D with K2, eat dairy and calcium rich foods. When I mentioned this to my rheumatologist she wasn’t worried.I also am on a bio-sulponate.

[maria40 in reply to Thelmarina]

Thank you for that. I've now ordered some K2 online. What is a bio-sulfate? Is it the same as a bisphosphonate?

[Thelmarina]

Yes - I just can’t spell!

[maria40]

Thanks, I thought it might be.

[Whippetygirl]

I too developed kidney stones whilst taking Alandronic Acid and Cal D3 stopped taking both and just take Vit D, no problems since.

[maria40 in reply to Whippetygirl]

That's good to hear. How long have you been taking the Vit D alone?