Low lymphocytes on Tecfedira- which vitamins

Hi all,

Ive been on Tecfedira for nearly two years. My lymphocyte count has been decreasing over the last year, from 1.5 to 1.0 currently.

If it continues then continued use of Tecfedira may be questioned. I adopted the “Overcoming MS” plan in December. This is a vegan + seafood diet (no meat products, no dairy and no egg yolks) with supplements of Linseed oil and Vit D3. The other tenets are exercise and meditation. The major benefit so far is that for the first time since dx I am no longer constipated. I have just bought a B12 supplement. I have taken D3 5000units daily since dx.

Ive discussed my results with my great MS Nurse and she has suggested I increase my supplements particularly Vit A & C, Magnesium and possibly a Multi vitamin.

My question is do any of you have useful advice re suitable supplements, good suppliers and anything missing

Thanks

Adam

hi adam

i asked the same question about supplements when first diagnosed.

i sent off for Mssential multivitamin supplement.

6 tablets a day (the size of cocktail susages)

each contains

Vit A 5000iu Vit B12 5000mcg

Vit C 1000mg folic acid 400mcg

Vit D3 4000iu biotin 400mcg

Vit E 200iu pantotheric acid (B5) 50mg

Vit K1 90mcg calcium 150mg

Vit B 1 50mg iodine (as potassium iodide) 150mcg

Vit B2 10mg magnesium (magnesium glycinate chelate) 300mg

Vit B3 100mg zinc 15mg

​Vit B6 50mg selenium 200mcg

copper (as copper amino acid chelate) 1mg

manganese (as manganese amino acid chelate) 2mg

chromium (as chromium polynicotinate) 200mcg grape seed 4:1 extract 50mg

molybdenum (as molybdenum chelate) 75mcg inositol 100mg

potassium (as potassium chelate) 50mg co-enzyme Q10100mg

BCM950 Curcumin 400mg choline 200mg

N-Acetyl Glucosamine 500mg. green tea leaf extract 500mg

i rarely take more than one per day because they are huge (like suppositories)

hope this helps

carole x

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Hi Adam

You may be OK to stay on Tecfidera so long as your lymphocytes stay at 1.0. It’s only when they go below 0.8 (the conservative view) or 0.5 (the absolute must come off 'tec now level) that you should be advised to come off the drug. The idea of Tecfidera is that it’s supposed to reduce your lymphocytes. That’s how it works. But when the lymphocyte level goes too low, you may become liable to opportunistic infections and you have to stop the drug. Some sources count a normal lymphocyte count as 1.3 - 3.5 and others 1.0 - 3.0 (then there’s a calculation of 10 to the power of 9 and something to do with white blood count, blah, blah).

What this means in practice is that some doctors take an extremely conservative view that a sustained lymphocyte count of less that 1.3 means you should come off the 'Tec. Most though would leave you on the drug unless you go under 1.0 for a period of a few months. Basically there’s really only a danger if you have extremely low lymphocytes for 2 years or more.

I actually really doubt that you can increase your lymphocyte count by dietary or supplemental means but I’m no expert so I could be wrong.

But the general view is that as you’ve already been doing, a high dose of Vitamin D is good, plus Calcium and Magnesium which I believe help the Vitamin D to be absorbed and B12 are pretty good for MSers.

Sue

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