Itchy skin sjogren's Remedy: It's A B12 and Iron Deficiency.

There is often a reason why you are iron deficient or B12 deficient. Both metformin and PPIs makes it difficult for your body to absorb B12 from food or even supplements. And of course with iron deficiency that can come from bleeding somewhere in your body such as your menstrual cycle, other times it could be internal bleeding from somewhere. If you have either of these two cases you cannot expect supplements or food to help you're deficiencies. If you are low in vitamin B12 the typical treatment would be regular injections of B12. If you are low in iron you can take iron tablets however some people can take all the iron tablets in the world and their iron levels will remain low. Those people have to get their Iron by IV.

I have just recently learned all of this because I have both of these. And I was taking a B-Complex supplement so just vitamins and eating right are not always enough.

Hi Nick,

I'm really glad you've found the solution to your itchy skin. I always feel we SS sufferers should take charge of our own health as far as possible - while agreeing that some degree of medical intervention is usually necessary as well.

However, Sjogren's being the wily disease it is, the solution to any of its problems isn't going to be the same for all of us.

I'm a case in point. I've been suffering from increasing itching all over my body for the past year, with no visible signs of dry skin. Needless to say, I use a good-quality dermatological cream all over once a day, and multiple times throughout the day on my hands, and have done for the past 30 years. This is the first time I've had this problem since my first SS symptoms presented 23 years ago. My GP, who is normally very clued-up on SS (better than a lot of rheumatologists) dismisses it as "senile dermatitis", though to be fair, he might be right as I've recently turned 74.

But is it due to iron and/or B12 deficiency? Well no, not in my case.

I got my last blood test done just two weeks ago. My haemoglobin was 15.1 on a scale with a maximum of 16. (I'll give the maximum on the scale I'm using in each case, as I realise different countries sometimes use different units.) Haematocrit was 43.4 (max 46) and erythrocytes 4.89 (max 5.2).

I seem always to have had the kind of metabolism that extracts iron very efficiently from what I eat. During the run-up to the menopause 30 years ago I suffered from fibroids, which caused severe bleeding for a couple of years (amounting to very public haemorrhage on two occasions). During this period, and for the previous 10 years, I'd been on a strict vegan diet, without supplementing with iron, yet my Hb etc. never fell below the mid-point on the scale.

Ditto vitamin B12 and folates. On the latest test, B12 was at 618 (max 835). I was supplementing with B12 until two years ago, when my doctor ordered me to stop because my levels had gone to over 1,000. Also at the latest test, serum folates 16.9 (max 12) and erythrocyte folates a slightly alarming 1200 (max 628). Not sure what's going on there, but I'm due to see the doctor again in two weeks' time, so will enquire.

So the bottom line is that iron and B12 deficiencies may well be one cause of skin itching, but it's not automatic and people certainly shouldn't supplement without medical advice - though I realise you're not suggesting that.

Incidentally, I'm not showing any signs of jaundice (a common cause of itching, particularly in the presence of raised erythrocytes) and my liver enzymes are all in mid-range.

My diet is fine. I started eating meat again 25 years ago, and now eat about four portions of red meat per month, with slightly more white meat. Plenty of oily fish, plus a good fish oil supplement, which I've taken for almost 40 years following a mysterious attack of generalised joint pain and swelling in my mid-30s. I eat liver only about once every two months to avoid OD'ing on vit A (which can be a problem) and on average four eggs per week. I still eat vegan once a week - using pulses (beans, chick peas, lentils etc.) I've eaten above-average portions of leafy green veg for nearly 50 years now.

I agree with you on sugar. That also goes for natural fruit sugars. I only eat two portions of fresh fruit per day, and avoid juices and smoothies - even the ones with no added sugar. I never had problems with wheat till about five years ago, when wheat (and, sadly, oat) products started to give me indigestion. I now largely avoid them but am not fanatical about it.

I disagree totally on dairy. Although I supplement with calcium and vits D3 & K2 (against osteoporosis) my serum vitamin D levels have struggled for some years even to reach the minimum. Having recently read that vitamin D is best absorbed from full-fat dairy - especially hard cheeses - I've added a little more into my diet. After only three months, my vitamin D levels have finally made it into the required range. Admittedly only 38 on a scale of 30-100, but it's a start! It was only at 20 a year ago.

Let's not forget that vitamin D is also very important in Sjogren's, as other posters have pointed out.

I think the bottom line is that we all have to figure out what kind of diet works best for us - just as you've done - rather than following any rigid rules.