Thursday, January 27, 2011

Vitamins, Supplements, and Sjogren's Syndrome


When readers email questions to me, it sure makes choosing subjects about which to write much easier. So thanks to G. for sending this question regarding the use of vitamins and herbal supplements to reduce the symptoms of Sjogren's syndrome.

Before this discussion commences, however, I'd like to point out something VERY IMPORTANT. So pay attention here, people.

Supplementing with vitamins or herbal products can be helpful to some - but downright dangerous for others. Many of these products can provide unwanted or harmful results in your body. Most of them can interact with many of the medications used in autoimmune and other diseases. Always - but always - check with your doctor before taking any of these products.

OK. Everybody got that?

Alrighty, then. On to G's question:

Does Vitamin D or GLA help?
You said spirulina is not good, but they say it contains high volumes of Omega 3 which I thought was good for Sjogren’s.
I hear good things about matcha tea. I was wondering your thoughts about it. 
Any other herbs that would be good to take? What about bilberry and ginko biloba?
I'm sure that most rheumatologists hear this and other questions like it frequently. Especially since in Sjogren's syndrome, often standard prescription medications may provide marginal or little relief of symptoms. It's so tempting to take a stroll down the supplement aisle of the local pharmacy and grab bottles of this or that or anything that promises increased energy and healthy joints.

But before you buy that bottle, take a look at the references below to make sure that when you swallow that capsule or pill, you aren't actually making your disease activity worse.

A general rule of thumb when viewing supplements and vitamin use in Sjogren's syndrome: If the product claims to boost your immune system, DON'T TAKE IT. Here's why: People with autoimmune diseases - yup, that includes sjoggies - have an immune system that does not need boosting. It's already too active. It's so active that it's attacking and destroying our own healthy tissue. Some herbals may increase this autoimmune activity or may counteract the effects on medications used to suppress autoimmune disease such as prednisone and methotrexate and may increase the likelihood of having a flare.

Herbals that fall into this category include alfalfa, astragalus, echinacea, ginseng, goldenseal, spirulina, and licorice root. See my link below to the Alternative Medicine Index to read more about these herbals.

With regards to the other vitamins and supplements mentioned in G's questions:

Matcha tea, which is a green tea commonly used in the formal Chinese tea ceremony, has an astonishingly long list of potential benefits, all supported by reputable studies: reducing atherosclerosis, reducing high cholesterol, avoiding cancer, reducing inflammatory bowel disease, improving diabetes, avoiding liver disease, assisting weight loss and even reducing tooth decay. You can read more about green tea and it's beneficial actions here. Like all herbs and supplements however, it also has potential side effects and drug interactions. You can find that information in the link above as well.

Vitamin D is a very, very good thing. You can read more about the benefits of this "sunshine vitamin" here. Here's a sampling:
"D is associated with massive decrease in breast cancer, prostate cancer, autoimmune diseases (including juvenile diabetes, inflammatory bowl disease, and multiple sclerosis).......even associated in such common, chronic problems such as high blood pressure and low birth-weight babies."
To find the right dose for you, check with your doctor. D is one of the two supplements that my rheumatologists recommends for me.

The other is fish oil containing DHA, a valuable omega-3 fatty acid. Which leads us to G's question about GLA, another of the body's essential fatty acids.

Here's where this discussion gets a little complicated.

This explanation and other following quotes are taken from the University of Maryland Medical Center:
Gamma-linolenic acid (GLA) is an omega-6 fatty acid that is found mostly in plant-based oils. Omega-6 fatty acids are considered essential fatty acids: They are necessary for human health but the body can' t make them -- you have to get them through food. Along with omega-3 fatty acids, omega-6 fatty acids play a crucial role in brain function as well as normal growth and development. Also known as polyunsaturated fatty acids (PUFAs), they help stimulate skin and hair growth, maintain bone health, regulate metabolism, and maintain the reproductive system.
Some studies also suggest that a healthy balance of omega fatty acids may reduce inflammation in the body and may also reduce symptoms of dry eye. Good stuff for those of us with Sjogren's syndrome.
Docosahexaenoic acid (DHA) is an omega-3 fatty acid. It is found in cold water fatty fish and fish oil supplements, along with eicosapentaenoic acid (EPA). Vegetarian sources of DHA come from seaweed. DHA is essential for the proper functioning of our brains as adults, and for the development of our nervous system and visual abilities during the first 6 months of life. In addition, omega-3 fatty acids are part of a healthy diet that helps lower risk of heart disease. Our bodies naturally produce small amounts of DHA, but we must get the amounts we need from our diet or supplements. Most people in the Western world do not get enough omega-3 fatty acids in their diet.
The key to using the omega-3 and omega-6 fatty acids in supplementation is to find the right ratio between the two. Most people have no problems eating enough omega 6 fatty acids. An average American diet typically contains 14 - 26 times more omega-6 fatty acids than omega-3 fatty acids.
For your overall health, you should try to balance omega-6 and omega-3 fatty acids. Aim for a ratio in the range of 2:1 - 4:1, omega-6 to omega-3. The average diet provides plenty of omega-6, so most people don't need to take extra omega-6 fatty acids. 
Keep in mind that too much of a good thing can actually be a bad thing:
Avoid doses of GLA greater than 3,000 mg per day. High levels may increase inflammation in the body.
As I mentioned earlier, these supplements do interact with other medications and have some unwanted side effects. A common problem in the use of fish oil and other essential fatty acids is the tendency to lengthen clotting time of the blood, which can be dangerous if you are already taking coumadin type medications which alter clotting times.

The University of Maryland's website on complimentary medicine and the use of herbals is an amazing reference for all herbal supplements. It's entitled Alternative Medicine Index and can be found here. Look on the left sidebar and click on herbs or supplements. You can read to your heart's content about ginko and bilberry there, as well, which both provide anti oxidants, but also may have dangerous drug interactions.

When reading this excellent information, be sure to scroll all the way through each article especially to the sections which discuss side effects and drug interactions. Seizures? Bleeding? Disease flares? NOT GOOD. Not kidding.

So to summarize this very lengthy answer to G's question, I would say that it is impossible for me to recommend any particular supplement or vitamin in the use of Sjogren's syndrome. Why? Because each of us has different symptoms and many of us are on medications which may interact dangerously with supplements.

I take vitamin D and fish oil supplements on the advice of my rheumatologist in doses prescribed by him, and I enjoy a cup of green tea most afternoons.

Ask your doctor for his/her suggestions for your particular situation. And tell 'em Julia sent you.

21 comments:

annie said...

Thanks Julia for some really great information.What is deceiving with our illness and makes us want to get out and buy all sorts of supplements, is the fact we are so sick and catch everything so easily, it would make sense to think that our immune systems are weak and in need of a boost.Asking your doctor and even your pharmacist is the prudent way to go.

Jazzcat said...

Thank for all those informations ! I do take Vitamin D regularly, and magnesium too. I love tea, but I drink it "decaf".
But your right, the most important before trying anything is to talk to your doctor !!

autoimmunemaven said...

Great information! Make sure you also consider interactions with medications & weigh the risk/benefit component when living with more than one autoimmune condition.

Thanks!
Sheila, RN

Tricia-Mom said...

The one thing that has given me the most symptomatic relief for the past 11 years is Devil's Claw, taken with full approval of both my GP and rheumatologist. Apart from its recommended joint benefits, it makes a huge difference to my salivation level.

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will glennon said...

That's very true that vitamins play vital role in terms of health. Thanks for sharing such a valuable information among the users about vitamin and supplements. I Got very useful information from your post. I am sure that This information helps a lot to the people who want to be healthy and fit in their daily life.

Anna Swiderski said...

Indeed, at certain times of day will be the same length, when night and day. But sometimes it also happens that the night is shorter than in the daytime.
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sjogster said...

I read with interest the bit about bleeding. Can you elaborate on that at all?

The reason I ask is that I have recently started bleeding through my skin, not large amounts and not with any regularity, but small amounts of blood, enough just to trickle, sometimes leak from the pores in my face, one side of my face in particular.

I asked my GP about it and she has no idea what it might be, advising me to speak to my rheumatologist about it next time I see him, which is in 8 months' time.

Does anyone know what this might be?

Debra Robertson said...

I really enjoy simply reading all of your weblogs. Simply wanted to inform you that you have people like me who appreciate your work. Definitely a great post. Hats off to you! The information that you have provided is very helpful.
Dr. Oz

Kushal Pandit said...

Thanx for ur post. plzzz tell me wht is the main benifits of MV, nd wht is the effect of MV on health ??

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I'm glad I stumble upon your websites, thanks for sharing such helpful post. This is very helpful.

Christi said...

Unlike other rheumatic illnesses, Sjogren's is different. While immune depressants work for the RA, Lupus etc, it does not for Sjogren's. Based on clinical trials, interferon can make a big difference, including reversing mucosal damage, as verfied by biospy. I am currently on such treatment through by Rheumatologist. I suggest others also pursue this treatment if you are not satisfied with your current condition. Good Luck!

Acker Arey said...

This post is really helpful. Thanks for sharing. Totally agree with you, Supplements are the important part of our life. We should buy supplements which contain all useful ingredients.

Shelly said...

What about B-Complex? I try to take it for energy when my body is all out and a flare up is happening.

Anonymous said...

Once a month I take a large dose of A for my eyes and skin. I try to be very careful since doesn't go out with the urine. If my eyes ge scratchy I take 25,to 75, thousand. I have experimented and I do this as infrequently as possible. I told my Dr and he never said not to. I do not have a tear duct and this has helped before I was diagnosed with sjg. This is not a recommendation just Something I do instead of the Restastes which has so many side effects.i wish I could find something natural for saliva.

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I am new to bodybuilding and one of my friends suggested me to take prohormone, but before taking them, I just want to make sure that I am taking a right move. You seem experienced and one who can help me.

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