TITLE:  PAN / Vasculitis Chat:  Diet/Supplements for the Vasculitis Patient

DATE: February 10, 2013

Participants:

Ed:                               PSN Director

Dr. Eric Hoy:               Immunologist

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Key Web Resources related to this chat:

http://www.hopkinsvasculitis.org/resources/vasculitis-faq/#diet

 

Ed_moderator:    How are you doing?  Did you have your big retirement! :-)

Dr. Eric:  Not really.  UT is offering me a position as "Adjunct Professor of Health Sciences", which will keep me active with the university.

Ed_moderator:  So it is not official retirement--- more of a change of duties.

Dr. Eric:  Yes...  not as much teaching, but more time to work with industry and get some of our new products through the FDA.

Ed_moderator:  I see.  Exciting.  How do you feel about this change?

Dr. Eric:  I'll miss the teaching, but I might get a chance to do some more teaching at another university in Fort Worth.  There won't be any moss on my north side!

I understand you were in California for a couple of weeks doing something rather interesting.

Dr. Eric:  Yes, I was  working with the company that is going to market our new automated microscope

Ed_moderator:  Tell me about what that means...automated microscope?

Dr. Eric:  This is a microscope that will automatically scan slides that have been set up for anti-nuclear antibodies (not relevant to vasculitis) and ANCA (which are relevant).  This will help standardize the methods between labs, and improve diagnosis.

Ed_moderator:  Very interesting...does it mean a time/manpower savings too if it does it automatically?

Dr. Eric:  Most definitely, but it doesn't eliminate the skilled medical laboratory scientists. In the past someone had to sit in a dark room looking at the slides and deciding if the patient has antibodies or not.

It required some one with a lot of experience and skill.

Ed_moderator:  That's very cool....are you marketing this microscope nationally?

Dr. Eric:  Internationally... we've already sold 10 in Australia. This week we had the guy from the European distributor in the US, and he's already sold eight of them!

Ed_moderator:  At least a microscope doesn't have to go through FDA for approval---of does it?

Dr. Eric:  Unfortunately, in the US, it does require FDA approval because there is software involved.

Ed_moderator:  What did you on this project?  Did you help design it?

Dr. Eric:  Originally my idea, and I've worked with the software engineers for the past 2 years.  LOTS of other help from vendors and marketing people

 Ed_moderator:  Okay, I'll toss some topics your way.   Here's the last one to be posted. Is the vomeronasal organ linked to autoimmune disease?

Dr. Eric:  The short answer is "no."  At least there has not been any evidence, and there isn't even a theoretical mechanism for a linkage.

Ed_moderator:  I've never heard of the vomeronasal organ.  Can you tell us what it is and what it does

Dr. Eric:  It is an organ found in most mammals, including humans, but it appears to be inactive in humans.

Ed_moderator:  Where is it located?

Dr. Eric:  It is very active in some animals.  My cat is using hers right now as she sniffs my slippers. It is in the nasal septum, and it recognizes the scent of other members of the same species. It is especially active with pheromones, which can tell some animals when another member is nearby, and/or in heat.

Ed_moderator:  Interesting..it sounds like something that proved to unnecessary with evolution?

Dr. Eric:  Humans don't need that, because we have the Internet for mating.

Ed_moderator:  LOL.... vomeronasal.com.  So I'm going to post Bettina's question here...   From Bettina:  "Here's where I get confused….. if autoimmune disease is actually the immune system in "overdrive" so that the body basically "attacks" itself, then…….. holding down the immune system is in order, right?

Dr. Eric:  Yes, the purpose of the drugs that are used, like Predinsone and Cytoxan, is to suppress the overactive immune system, so "boosting" it is a very bad idea.  The good news is that most of the junk that is sold over-the-counter is not capable of "boosting" the immune system in any way. So taking supplements, vitamins, special foods, etc. might make you feel better, you are saying it has no effect on your immune system or your vasculitis.

Ed_moderator:  Now to be devil's advocate...is there anything in the way of vitamins or supplements that could potentially boost the immune system...

Dr. Eric:  Not really.  There are some things that might make one aspect of the immune system change briefly, but the whole system is so tightly controlled by many different mechanisms.

 The key is to find what it is that disrupts that control, and  leads to vasculitis.

Ed_moderator:  Remember, we had that knucklehead join our group some years ago pushing an herbal booster...was there a real threat or concern that his product could have done so?

Dr. Eric:  I remember him, and what he was pushing would have no effect on the immune system, whether the person has a normal immune system or vasculitis. The biggest threat from these quacks is that they often encourage the patient to stop taking real medicines. They also create false hope and drain the bank accounts of the victims.

Ed_moderator:  So it's okay for vasculitis patients to take garlic or turmeric? Essentially you say that don't have enough of an effect to be dangerous.

Dr. Eric:  I would take them in foods.  Taking capsules full of "Dr. Feelgood's Garlic Extract" probably has no effect.

Ed_moderator:  Also, from Bettina..."The presenter presents that an anti-inflammatory diet and a diet that boosts the immune system is appropriate. I truly can't make sense of this. It indeed seems that some of the info out there says to diet and supplement according to holding down the immune system, and then the other info out there says to "boost" the immune system."  I believe Bettina is  talking now more about diet and foods)

 Dr. Eric:  That's because there is no such thing as a diet that boosts the immune system, and I have serious doubts about the "anti-inflammatory diet."

Ed_moderator:  I know sugar has been touted as an inflammation food..

 Dr. Eric:  And so have sugar substitutes, flour, water, and air.  People who never use any of those don't develop inflammation (because they are dead.)   We have to be careful to look at CAUSES, and not CORRELATIONS.

Ed_moderator:  What do you tell vasculitis patients in terms of what they eat and their diet?  Are there some guidelines, or just the same diet info you'd give to someone who is healthy? Eat  lots of veggies, low fat, etc.

Dr. Eric:  A normal well-balanced diet.  If they have celiac with their vasculitis, they have to avoid wheat flour.  If they are overweight, they need to restrict sugars and fats.  But there are no magic foods.

Ed_moderator:  What about the foods in terms of the typical meds they're taking..Prednisone..Cyotaxan....are there any diet guidelines in terms of how they interact with meds?

Dr. Eric:  There are a few, and they should talk to their doctors about that.  If someone is on Prednisone, they need to take supplemental calcium and vitamin D.

Ed_moderator:  I'm not being a contrarian here...just trying to make it clear for our members.  I agree with Bettina—there's so much information and much of it is contradictory.
So—to clarify--- there are some vitamins and supplements that could have benefit to the vasculitis patient?

Dr. Eric:  Yes, and I don't want to sound like I'm opposed to supplements and diets.  There are some that make sense, some that just make us feel better, and some that have no effect.  The key is to sort out which is which.

Ed_moderator:  The other thing in terms of diet—specifically being on prednisone.  I understand it  can turn someone into a bear as far as eating, so you probably need to observe the common sense guidelines knowing that you'll probably be overeating.  The key is to over eat healthily as much as possible.   I'm half serious, but increased appetite is an issue for patients on steroids.

Dr. Eric:  One important point is to recognize that foods are NOT medicines.  Never substitute a food or supplement for real medications without consulting your doctor.

 Ed_moderator:  I didn't see the video from VF symposium called, Back Away from the Cheeseburgers, but I think that was the message...

 Dr. Eric:  That's right.  Prednisone can cause a large weight gain in some people, and they need to follow a calorie restricted diet that is healthy.

Ed_moderator:  Now, let's consider someone who has CNSV which is a vasculitis that causes inflammation of the brain and spinal cord.  Some people get horrible migraines when they eat certain things like MSG.  Could someone with CNS trigger more pain by eating something like that?

Dr. Eric:  Yes, there are a lot of examples of food hypersensitivities, and a mild reaction in someone without vasculitis might be worse in someone with vasculitis.  Unfortunately, there is no real way of predicting this, but if you have had a reaction in the past, avoid contact with that food.

Ed_moderator:  Here's a related question from Jenny..."My doctor told  me to take turmeric pills to help with the inflammation. My liver has been acting out then I am postponing any intake of anything until I get a normal status for my levels. I understood we are not supposed to boost our immune system because that's exactly what causes the problem. Our inmune system goes out ! of whack and attacks our body. Then it shouldn't be boosted."  Interesting, she has a doc telling her to take turmeric and actually she is the second one to tell me a doc said the same thing.  What say you?

 Dr. Eric:  I saw that post, and I questioned (in my mind) if she's talking to a real doctor, or some "herbal doctor."   Turmeric interferes with some enzymes called cytochrome P450, and these enzymes are involved in normal metabolism of many drugs, including cyclophosphamide (Cytoxan), so I would approach it with caution.

Ed_moderator:  It seems like the answer is....you don't want to boost your immune system (in theory) with anything if you have PAN, but there is little danger of boosting your immune system, or even lowering it because essentially these supplements don't do either thing.
Is that accurate?

Dr. Eric:  Yes, they have no effect on the immune system directly, but they might affect some of the drugs that the patient is taking.

Ed_moderator:  And of course we always go back to our mantra...don't do anything until you talk to your doctor.

Dr. Eric:  Exactly right.  We're here to help, but not to provide medical advice.   Yes, I'll do the response to the list.  If anything doesn't match what I said here, let me know!

 ED:  Thanks for being here tonight. 

BONUS SECTION:  (additional info on diet and vasculitis

Does diet affect vasculitis?

This is one of the most commonly-asked questions by patients with vasculitis. All patients want to do whatever is within their power to help treat their disease. Unfortunately, there is presently no evidence that a person's diet affects susceptibility to vasculitis, or that consuming or avoiding certain foods or beverages affects the course of the disease. In general, we advocate eating a balanced, "heart–healthy" diet. Avoidance of excessive calories may be very important, particularly in patients on steroids who are at risk for weight gain. We believe that some vitamins are appropriate, but are skeptical about many "alternative" health remedies. Many of these are poorly-tested, unregulated, and expensive. Some may even be dangerous.