Is anyone like me and have to take vid D and calc... - PMRGCAuk

PMRGCAuk

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Is anyone like me and have to take vid D and calcuim.

Harrywogan
Harrywogan

Have just decided to stop all calcuim and Androlic Acid for a few months,have asked GP to check my levels I've been taking them for 3 1/2 years and I may not need them,had bone scan done and there not that bad yet dont has any been told to stop there calcuim and vid D, if test come back normal I'll go back on them but think the break wont do me any harm.

51 Replies
PMRpro
PMRproAmbassador

DO continue to take the vit D even if you decide to make sure you get enough calcium in your diet. Pred increases the loss of calcium (and other things) through the kidneys so having more floating around in the gut does often mean enough is taken up without having to resort to bisphosphonates. I took calcium and vit D religiously until a couple of years ago when I decided the calcium was causing bladder irritation and stopped, making sure I ate more cheese and yoghurt. I continued with the vit D though as there isn't much in food.

My dexascan was normal right at the start and hasn't changed a lot over 11 years of pred. But as I say, I took calcium and vit D. Did I really need it? I don't know. But the end effect has been that I haven't been told to take anything stronger. It's like your car insurance - you pay it and hope you never need to claim.

Harrywogan
Harrywogan in reply to PMRpro

Thanks Ambassador will here from gp tomorrow and if all normal will start taking them again,think I was concerned I may get kidney stones. Take care

PMRpro
PMRproAmbassador in reply to Harrywogan

That can be a problem though more likely grit forming in urine and gall bladder - see jinasc's reply. Which is why I chose to try to have more in my diet for calcium. Vit D is a different matter and it is being realised it is very valuable in chest/lung health amongst other things.

tangocharlie
tangocharlie in reply to PMRpro

I remember I used to take Adcal when I first started on Pred in 2012 but recently doctors haven't mentioned or prescribed it. Maybe I shuold ask? My last DEXA scan was about 2 or 3 years ago and theings were fine then. Like you say, you never know, it's insurance

PMRpro
PMRproAmbassador in reply to tangocharlie

Probably saving money - buy your own ...

tangocharlie
tangocharlie in reply to PMRpro

I think I did read that they stopped prescribing Adcal but do still prescribe AA which I refuse to take. "Alexa, add calcium to the shopping list"

tangocharlie,thy still prescribe it here,mind you our prescriptions are free, have cut my AA down it was one a wee now I take it every second week. Thanks for your support,take care

Petcut
Petcut in reply to tangocharlie

I was at the hospital on Saturday and the Dr.gave me a script for Adcal-d3 twice daily so some Drs. are giving it.

This is a PERSONAL decision I made. After developing Pseudo Gout, I dropped every ' just in case' except Vit D.

Someone once told me that anyone North of Tuscany is probably Vit D deficient. As we got older we don't sit in the sun and also most people use Sun Screen. About 20 mins in sun without Sunscreen helps to maintain Vit D. But we in the UK don't have enough sun all through the year.

Ask you GP for a full Blood Test as this includes all minerals as well. I was lucky my GP did a full one every three months.

Canada still fortifies their milk with Vit D, the UK stopped doing it in the late 50's early 60's.

Harrywogan
Harrywogan in reply to jinasc

Thanks,good to here what other people think,take care

Vitamin D in itself won't cause kidney stones, but as its job is to absorb calcium it can play a role if you have a high calcium intake. However the risk from calcium supplements is much reduced by also taking Vitamin K2 (not K1). Vitamin K2 sends calcium to the bones where you want it, so it doesn't settle in unwanted places. It's an important micronutrient which many of us are now deficient in because of the way we raise our animals (grass-fed good, grain-fed not). I wouldn't drop Vitamin D, provided your level is healthy, but I'd add Vitamin K2, no matter what you decide to do about your calcium supplements.

Harrywogan
Harrywogan in reply to HeronNS

Thanks Heron didn't know that,thank Q.

HeronNS
HeronNS in reply to Harrywogan

A happy side effect of my taking Vitamin K2 has been that my sensitive teeth aren't sensitive any more. Vitamin K2 is good for our dental health too!

Harrywogan
Harrywogan in reply to HeronNS

Well that would be great for me I have started to get sensitive teeth thanks again x

PMRpro
PMRproAmbassador in reply to Harrywogan

vit K2 plus Sensodyne toothpaste!

Suffererc
Suffererc in reply to PMRpro

That’s me 😬

HeronNS
HeronNS in reply to PMRpro

I can't use Sensodyne, Colgate Sensitive instead.

PMRpro
PMRproAmbassador in reply to HeronNS

Luckily my nice dentist offered some samples, I tried loads. The primary problem was finding one I could stand the taste of! But Colgate didn't appear to work. The best for me: Sensodyne Pronamel, costs a fortune but works.

HeronNS
HeronNS in reply to PMRpro

I must be sensitive to an ingredient in Sensodyne as it gave me a sore mouth. Have had this problem with other toothpastes so there must be something in some of them.

HeronNS
HeronNS in reply to Harrywogan

It was unexpected. I remember one time before I started pred but probably already had PMR (undiagnosed) at a little volunteer job I had, phoning my husband to bring me my sensitive teeth toothpaste as the dentist had said just rubbing some on my teeth would soothe the sensitivity between regular brushing. It was that bad. With pred and improved nutrition to counteract pred side effects, including Vitamin K2 for the anti-osteoporosis thing, now I'm not aware of any problems, although admittedly I would never bite into an icecream - but then I never did even as a child!

DorsetLady
DorsetLadyPMRGCAuk volunteer

I continue to take VitD/Calcium supplement even after 4 years of remission....GP suggestion when finished Pred.

Had DEXA scan 2 years okay, no issues, but recommendation was to continue with it, so I have. No problems.

Thank Q good to know that,was worried about getting kidney stones dont know where that started lol .Thanks again

Good plan. I wouldn’t return to AA if I got a good Dexa result. We all need vit D at present and K2 for the absorption maybe.

Thanks SheffieldJane will get K2 and give it a try Take Care

Doc still prescribes my Vit D

Harrywogan
Harrywogan in reply to Bcol

Colour,yes so does mine xx

When diagnosed with gca 2 years ago I was prescribed and continue to take 50,000 units vitd2 once a week and 2000 units vit d3 daily. I live in northern USA with very long winters, limited sunshine. Dr said to get my calcium through diet. I finally did agree to take bisphosphonate (Boniva iv every 3 months) for osteoporosis. Looking forward to 2nd dexa scan in a few months. Difficult decisions to make about prescription medications. Still tapering off prednisone and on Actemra. Lots of good information and support for you on this site. Best wishes to you.

PMRpro
PMRproAmbassador in reply to Spanky2019

I hope you get your vit D levels checked when you are on a massively high dose like that - if I understand you correctly you are effectively taking 9,000 IU a day which is more than double the recommended maximum. Those are the doses used to rectify vit D deficiency - and to be used for not more than 3 months before checking the blood level.

I had a review of medication with Pharmacist who told me that vit K2 is of no benefit to take with calcium/vit D supplements.

I was told by GP to stop taking my combined Vitamin D and Calcium as my calcium levels were too high. After 3 months I questioned whether I should restart the VitD but was told the sun would do the trick😂 I live in UK.

Next blood test was told to start VitD immediately as it was too low!!

As far as AA is concerned I couldn’t take it at the beginning of my journey 3 years ago as it caused bad burning in my throat. I can’t say if I’ve suffered for that as I can’t get a dexa scan but it never hurts to question the medication that’s continuously prescribed.

Thanks keeptalking, like to here everyone stories good to know .

I stopped taking the adcal. I wanted to know if it was the calcium that was causing my chest pains and rushing heart. Tried by eliminating other things first. After not taking for two days my heart stopped pounding and the chest pains started to ease. After 3 weeks I have not had any chest pains. So will not take again. I bought vit D3 and just take those. Gave up on Alendronic Acid months ago. My bone scan wasn’t so bad either.

May just be coincidence but anything worth a try and why take meds if you don’t need them.

Suffererc
Suffererc in reply to Suffererc

Ps I take Vitamin K2 also

Harrywogan
Harrywogan in reply to Suffererc

Sufferers, been here about K2 but not sure,some said it didn't help but thinking about it when I can get to Boots chemist,local shops dont stock it . Thanks xx

Telian
Telian in reply to Harrywogan

I get Vit K2 online Harry from

Troo Healthcare. They’re a good company specialising in UK made supplements.

Harrywogan
Harrywogan in reply to Telian

That's good to know thanks x

Suffererc
Suffererc in reply to Harrywogan

Holland and Barrett. Shops and in line

I was on calcium tablets for years as my mother had polymyalgia and, as a result of having high doses of steroids, ended up with bad osteoporosis. However, after I'd had my gall bladder removed, about 25 years ago I was advised to stop taking them. I'm now 77, have been diagnosed with PMR since last August, and dropped from 15mg to 7.5mg prednisolone in 7 weeks. I remain on 7.5mg. The one thing my rheumatologist was insistent upon was taking a Calcium and Vit D supplement so I'm doing so. A dexascan last June, before diagnosis, showed mild osteopenia in one hip and lumber region. I see my rheumy every 2 months and before each appointment I have a series of bloods tests. Today's appointment showed excellent blood test results and he said I could drop to 5mg but would leave it up to me. I'm still thinking about what to do. I feel really well and don't want to go back to pain. I have another dexa scan next week. I'll wait to see the results before I make any kind of decision.

PMRpro
PMRproAmbassador in reply to Pr0jection

I certainly wouldn't drop from 7.5mg to 5mg in a single step - but edge down 1/2mg at a time. Then you see what dose is enough - it might be 6mg, it might be 5mg, but you remain very much in control.

Pr0jection
Pr0jection in reply to PMRpro

That's exactly how I'm thinking. My rheumatologist remembered me saying, right at the beginning of treatment that I wasn't happy being on steroids and would like to taper fairly quickly. However, having seen so many people suffer flares because of tapering too quickly and too steeply that I've had a rethink. The problem is that Cyprus only has prednisolone in 5mg tablets. I have a pill cutter so could cut one tablet into 4 if need be. It would be good if I could get to 5mg by the end of the summer, but will take it easy. Thanks PMRpro

PMRpro
PMRproAmbassador in reply to Pr0jection

The Dead Slow Nearly Stop was originally partly developed for people who were on enteric coated pred which only came in 2.5 and 5mg tablets then so slow tapering wasn't easy at all. if you have only one day a week at the new lower dose that is 2.5mg less that is about the same as dropping 1/2mg overall. And your body doesn't normally get too upset at one day so much lower.

Well, I chose not to take Vitamin D/ Calcium at the beginning of my GCA diagnosis, and I have suffered badly. 2 1/2 years after the initial bone scan, I had 3 compressions fractures, and lost my ability to walk, I was bedbound and intractable pain for 4 months. I was on lidocaine patches, oxycodone, tylenol around the clock and much more, before, I got 2 kyphoplasties to fix the problem. It has been a year and I am still in rehab!! working on climbing steps, so my wife and I can move back aboard our home 22yrs, our yacht "Spindrift". So if I had to do it all over again, I would swallow the pills!! yes they are big, but they will help you!! I now have osteoporosis and I am due a new bone scan this week!! Praying for a improvement!

weatherman69 thanks for your feed back,I've had a chance to speak to gp and when I read your blog I've started back on them, hope things get better for you,Can I borrow your Yacht😁 take care xx

What a horrible time you have had weatherman. I was told last week that I have a stress fracture of my left hip last week. I saw my rheumi just before Christmas an MRI scan had shown a very inflamed left hip he thought looked like rheumatoid arthritis. I received a letter a month ago to say that my calcium level was too high and to stop taking the calcium /vit D tablets which I did but I also stopped taking the Alendronic acid as was well because I made an assumption that they worked together. I

PMRpro
PMRproAmbassador in reply to Hiibilly

How high?

Hiibilly
Hiibilly in reply to PMRpro

The calcium level was 2.75 but is back to normal now. I am finding it all very confusing and I am now terrified that I will loose my mobility. I am waiting for a Covid vacs before they will do anything. Just got told not to weight bare.

PMRpro
PMRproAmbassador in reply to Hiibilly

Very helpful!! Not very practical is it!

Hiibilly
Hiibilly in reply to PMRpro

No not helpful at all just left in limbo. Terrified about the condition of my bones. Its likely that my sunsensivity induced by the mix of drugs given to me after my first hip replacement I had 10 years ago cause that, which led to skin problems and obviously a vitimin D deficiency. I was just recovering from awful debilitating skin condition which has caused scaring and alopecia when I started with PMR. I have been taking vitD for ages but neither the GP, pharmacist or Dermatologist had a clue what dose I should take but I have been pinging back and forth one specialist to another and getting nowhere watching my mobility and life sipping away. Just stuck, trying to get things moving and feeling ahhhh.

PMRpro
PMRproAmbassador in reply to Hiibilly

Have you had a blood test for vit D? And how much vit D do you take?

The doctors have no excuse - it depends how deficient you are and there are NHS guidelines all over the place, almost every hospital Trust has a handout online.

Hiibilly
Hiibilly in reply to PMRpro

I am just taking the over the counter recommended daily dose at present but the rheumatologist said I would need a much higher dose just waiting for him to inform the GP. They want act until they have his letter. I will have a look for my self what is recommended. Thank you for that I am in bits just not functioning well.

PMRpro
PMRproAmbassador in reply to Hiibilly

If you are really deficient then you will probably get a very high dose for 8-10 weeks until they check it again to get it up to where it should be.

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