Should I be taking supplements

[Bcol]

Morning all. Apologies but more advice please. I have noticed from the posts here that many of you are taking supplements for bones etc. I know I have only been on Pred for a couple of months, but do/should I be suggesting to doc that I should be looking at other medication to go with the Pred, or is that something to consider for the future.?

[Arflane97G]

I take fish oil capsules, vit d3 and k2. My calcium intake is ok but k2 helps the body absorb it I was told. Have also tried vegan collagen and hemp tablets.

[DorsetLady PMRGCAuk volunteer]

Here in UK, usual practice is to be prescribed a VitD/Calcium supplement - AdcalD3 - alongside Pred.

Not taken at same time as pred - they interfere with absorption.

Info - theindependentpharmacy.co.u...

We do suggest VitK2 as well to aid the absorption of calcium - not prescribed.

[RoadTrip in reply to DorsetLady]

If taking the supplement, which appears to cover the RDA for calcium, is it still necessary to add high calcium foods to my diet?

[DorsetLady PMRGCAuk volunteer in reply to RoadTrip]

If, and when possible (in the current climate) it might be worth asking for calcium levels to be tested - just to make sure your levels are not too high, but we do need extra whilst on Pred.

[Bcol in reply to DorsetLady]

Okydoky, I'll see what I can do. See if I can get a phone call.

[jinasc in reply to RoadTrip]

Please take note of the answer by DL. I was prescribed Ad-cal as usual when starting out with GCA. No-one thought about testing to see if I needed Calcium, until I ended up with pseudo gout - needless to say, caused by too much calcium and the grit in the gall bladder, eventually caused many years later stones.

If anyone else read this and has doubts, ask for that test.

[Bcol in reply to DorsetLady]

Thanks DL, need to have chat with doc at some time then.

[RoadTrip in reply to DorsetLady]

“Not taken at same time as pred - they interfere with absorption.“

Oops, I’ve been taking them at the same time. Does it cause problems for the PRED or the supplement? How long is it best to leave?

[PMRpro Ambassador in reply to RoadTrip]

Works both ways - and 2 hours is said to be enough. Pred for breakfast, calcium for lunch and tea/dinner

[Hidden]

I take Omega 3 1000mg X twic daily.

Magnesium Malate 3000mg (evidently as we get older many of us are lacking in Magnesium)

Vitamin D3 300 iu one daily

Boron 3 mg one daily one daily

Zinc 15 mg one daily one daily

Lutein Zeaxanthin one daily (eye health)

Biotin 10,000 (max strength for hair, skin and nails) one daily)

Adcal (Calcium) with added D3 and K2 for absorption.

Vitamin C high strength powder in a little water.

A lot to take I know, but I feel better when I take them, as when

I take a rest from them for a couple of weeks when on holiday

I notice the different

[Bcol in reply to Hidden]

Wow

[Hidden in reply to Bcol]

Ha ha, does seem rather a lot, but when you think there is only a very small amount of vitamins and minerals in a Multivitamin, so no point in taking them. I don't take A, but recently bought a mouth spray for B12 as my last blood test I was a bit low in that. The spray absorbs better than the tablets to boost B12.....do I rattle when I walk, not yet !!

All I wish is that the very dark and low mood I've been experiencing for the past 10 days would go. I know it's the Prednisone doing this, but so hard to function when mood feels so low. I feel so very sorry for people that suffer with depression, something I've never suffered, but now know how they feel, it's so debilitating. I really don't want to have to take antidepressants.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Why extra Vit D3 above the Adcal amount? Or am I miss reading?

[Hidden in reply to DorsetLady]

My friend who is a nutritionist has research with a lot of her colleagues who are in the US (she's in England) about Vit D3. So many people are deficient in D. Even the sun as we get older doesn't give us as much as we need. She has recently paid for a blood test to get hers checked out. She gets loads of sun and has taken the supplement like myself for years. Hers just about came up what it should be but they've said it should still be higher.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Ok, that makes sense. Just being nosey!

[Hidden in reply to DorsetLady]

You're not be nosey at all. It's good to know the facts about any given subject. You're so knowledgeable re PMR/GCA. Hope you're doing okay Sue. I'm struggling so badly with dark moods and just can't seem to buck myself up. Really don't want to result to having to ask for antidepressants as I know it's the Pred making me feel this way.

Kindest regards

Anne

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Hi,

Sorry to hear you’re feeling low, but it’s such an uncertain time all round so irrespective Pred it’s no surprise really.

There is no shame in asking for help, sometimes we cannot “buck ourselves up” much as we want to, so please don’t suffer unnecessarily.

Me - I’m fine at the moment, thank you.

[PMRpro Ambassador in reply to Hidden]

It doesn't matter if it is the pred - it can still be helped ...

[PMRpro Ambassador]

Increasing your calcium is important but that can also be dietary (and that is better) and vit D is really important. They are usually handed out automatically with a pred prescription but if they aren't you need to be proactive.

I take no other supplements except the occasional magnesium supplement but I don't need it for cramps as I need it for improving my arrythmia and that covers the cramps! Others insist that vit K2 is essential and if it isn't contraindicated for you and you don't eat a lot of natto or other dietary sources it is probably not a bad idea.

jinasc mentions the psuedo gout problem with calcium - it can also be the source of bladder problems if you do form the grit because it can lead to cystitis without infections.

A good and varied diet covers the need for most supplements - more is not always better and too high intakes of certain things can be more dangerous than being a bit low on them. Excess of any water-soluble things wil be pee-d straight out forming expensive urine (high dose vit C is a major item there) and fat-soluble supplements are stored in body fat so that you run the risk of accruing toxic levels and they are very difficult to get rid of. Vits A and D are relevant there and high vit A levels can make you very ill.

[piglette]

I am prescribed vitamin D with calcium to help counteract the side effect of pred that can cause bone density deterioration. I do not take other supplements as I try to have a balanced diet which I feel is better. Unless of course the supplements were particularly prescribed for something. In fact the majority of supplements taken are not needed apart by the supplement manufacturers who make a lot of money selling us products we do not need.

See this NHS report:

nhs.uk/news/medical-practic...

[Hidden]

I take two supplements prescribed by my GP. In addition i have also increased the quantity of magnesium rich foods I eat. Difficult call as we are all different, however, I have continued taking the omega, vitamin C and D which I took before diagnosis and have seen no reason to change.

Good luck, purchasing supplements at the right concentration is a minefield.