PAN / Vasculitis Chat
Ed: PSN Moderator
Dr. Eric Hoy: Immunologist
Terri: PAN Group Member
Teri: Hi Ed. Just us? My mom asked me to see if you're familiar with Microscopic Polyangiitis?Teri:
Ed Moderator: Hello Dr. Eric..Welcome Teri
Dr. Eric: Hello, everyone!
Ed Moderator: Welcome to the chat folks...no guest tonight (being the Oscars I guess) couldn't get anyone to come... Teri...please restate your question you asked about MPA?
Dr. Eric: I don't expect to win one, so I'm not interested
Teri: I just wanted info on it. Is there a magazine or any group in the US dealing with it specifically?My mom was misdiagnosed with PAN originally, and now her latest Dr. has changed that to MPA.
Dr. Eric: MPA was once considered to be a subgroup of PAN
Ed Moderator: Teri, by the way, one of our members runs an MPA group. I can put you in touch with Cindy Webber
Teri: The difference being? That would be great!
Dr. Eric: There are now a few things that differentiate the two, but they are very close clinically MPA is usually ANCA positive; PAN is rarely ANCA positive. MPA involves smaller blood vessels than PAN
Teri: same treatment?
Dr. Eric: same treatment
Ed Moderator: Teri, when was your Mom first diagnosed?
Teri: 2001 I believe.
Dr. Eric: MPA can be more aggressive to the kidneys, so sometimes treatment is more aggressive if there is kidney involvement
Teri: She complains mainly about weakness. Inability to do much
Dr. Eric: Weakenss and fatigue is common in both
Teri: She has suffered reduced kidney function.
Dr. Eric: In fact, that is often the first symptom in some patients
Ed Moderator: I didn't realize that about the kidney's, Eric. So they can attack harder than PAN?
Dr. Eric: Ed. yes, there is a form of MPA in which only the kidneys are affected... it is often very advanced by the time diagnosis is made... similar to your mother's case. How much is her kidney function reduced?Dr. Eric:
Teri: I think she only has about 25%
Dr. Eric: That's still enough that she probably won't need dialysis yet
Teri: NO not yet.
Dr. Eric: Teri, are any other organs affected?
Teri: No other organs affected. She had fluid buildup around her heart and lungs at Christmas
Ed Moderator: What decisions are made as to when to start dialysis?
Dr. Eric: degree of kidney damage (measured by lab results) and rapidity of damage
Teri: Hospitalized for a week.
Dr. Eric: When did her symptoms first appear?
Teri: September 2003 was PAN, then Pauci Immune Crescentic GN, now recently MPA
Ed Moderator: Please explain Pauci Immune Crescenitic..not familiar with that term
Dr. Eric: Pauci Immune Crecentic GN is the subset of MPA that I was referring to. She had a kidney biopsy at that time?
Teri: Any new research linking Lipitor to these outcomes? Yes. Showed about 25%.
Dr. Eric: No link that I'm aware of... I have been researching triggers of autoimmune diseases for over 20 years
Teri: My mom's cousin has Temporal Arteritis and was also on Lipitor.
Dr. Eric: many drugs have been blames, but none have been proved to be a cause
Ed Moderator: On the topic of statins like Lipitor, wasn't or isn't there research about using them in the treatment of vasculitis? I thought I read that somewhere
Dr. Eric: Ed, yes, there is evidence that they reduce inflammation in the blood vessels, and CRP overall
Teri: I myself have Type 1 Diabetes (for 30 years) and Hashimoto's. Auto Immune is so common!
Dr. Eric: Hashimoto's is extremely common, especially in women
Teri: So do bromelain and turmeric apparently that's what my mom uses to reduce inflammationTeri:
Dr. Eric: Yes, there's more evidence emerging that vascular inflammation is a precursor of vasculitis, coronary artery disease, and other diseases
Ed Moderator: Teri, what is your Mom's treatment plan right now? By the way, where is she being treated, what hospital?
Teri: In University Health Science Centre in London. She's on 100 mg Imuran, 5 mg Prednisone & 4 BP meds.
Dr. Eric: Are Bomelain and turmeric considered drugs in Canada?
Ed Moderator: Holy cow..I just used turmeric in a recipe..at least I think so...am I thinking of something else maybe...
Teri: No, Dr. Eric, they're not pharmaceuticals. These were prescribed by her naturopath.
Dr. Eric: both bromelain and turmeric are herbs... vary dangerous in vasculitis!
Teri: based on...?
Ed Moderator: please explain, Eric!
Dr. Eric: Bromelain is a protease... like PR3, one of the enzymes that is a cause of a positive ANCA, and affects the blood vessels!!!
Teri: She figures it's a statin substitute. Dr. Godfrey on Dundas Street in Toronto recommended this. He also suggested Hawthorn
Ed Moderator: Do you mean it could cause inflammation, Eric?
Teri: How would zinc be for her to unclog her arteries?
Dr. Eric: the treatment that the naturopath (considered quackery in most of the USA) has "prescribed" may actually be increasing the inflammation
Teri: Naturopaths are not considered quaks in Canada, but pharmaceutical drug companies push poisons in the name of profit!
Dr. Eric: I just read a review article on zinc.... no effect in the common cold, influenza, or coronary artery disease... probably non-toxic, but so is water....
Teri: I notice it works for cankers!
Ed Moderator: Well, Teri, I think the caution is that some herbs may be harmless. I mean you can take them if they make you feel better.but what is critical is if that herbal remedy has a counter active effect
Dr. Eric: Teri, you are being brainwashed by the anti-pharmaceutical lobby....
Teri: That would be my mother and sister!
Dr. Eric: The general rule, whether herb or pharmaceutical is: if it has an effect, it has a side effect... you need to understand both How much turmeric does she take?
Teri: My mom is booked to see a cardiologist - is there anything she should ask?
Dr. Eric: she should ask if the herbs and spices are contraindicated...How much turmeric does she take?
Teri: She's taking 300 mg. turmeric and 150 mg bromelain
Dr. Eric: how is that standardized? are they regulated in Canada like pharmaceuticals?
Teri: Okay. What about Quercetin as an anti-inflammatory?
Ed Moderator: Dr. Eric, this brings me to a side note...but what an important one..the differences between taking herbs that may or may not help you but don't have a counter effect and those that can actually promote inflammation..
Teri: Yes. They are regulated here.
Ed Moderator: What is Quercetin?
Dr. Eric: Quercetin has been touted as a cure for everything, including cancer... here is a quote from a site that I looked up:
Teri: I'm on it for diabetes too...I saw it on the internet.
Dr. Eric: Despite these indications of possible health benefits, Quercetin has neither been confirmed as a specific therapeutic for any condition nor has it been approved by any regulatory agency. In fact, bioavailability studies show that ingested quercetin is extensively metabolized into non-active phenolic acids, with more than 96% of the ingested amount excreted within 72 hours, indicating actual physiological roles, if they exist, involve
Dr. Eric: Quercetin in only minute amounts.
Ed Moderator: Now in a case like that Eric...it's saying it's basically harmless. You're just not getting any benefit? as opposed to something that could actually produce a bad effect
Dr. Eric: yes, and that is the case with most herbals... they don't hurt, and the patient feels like something is being done, so who cares?
Teri: My mom wants me to ask what you recommend to cure vasculitis and other auto immune diseases which have been more prevalent in the last twenty years since statins came on the market?
Dr. Eric: Teri, there are two ideas in that question... and they are not related. your mom is saying that the increased use of statins has led to an increase in vasculitis, right?
Teri: and or auto immune disease which health Canada has verified
Dr. Eric: there has also been an increased use of herbal remedies. Couldn't that be the cause of the increase in vasculitis?
Dr. Eric: and other autoimmune diseases?
Ed Moderator: :-) I do feel more inflamed after my Moo Goo Gai Pan
Dr. Eric: correlation does not indicate causation
Ed Moderator: Teri, to get back to your thought...
Dr. Eric: There have been more Starbucks stores opened in the past 20 years... maybe they cause autoimmune disease
Ed Moderator: nahhh, that just means we have less money.. More latte less money
Dr. Eric: Starbucks should be called ‘four-bucks’ coffee...
Ed Moderator: Are you saying that it has been established that statins have been found to be a cause.
Teri: Autoimmune diseases occur in people that are SENSITIVE to statins, but there's no pretest for sensitivity. Why not?
Dr. Eric: Teri what is the evidence for that statement?
Teri: Dr. Eric...my mom is looking that up. It's an adverse drug reaction reported to Health Canada.
Dr. Eric: do you have a reference in a medical journal or the HC website?
Ed Moderator: Eric, question...please tell some of the herbs that can cause or are suspected to INCREASE inflammation. You're saying there is a class of herbs whose enzymes can promote it, right?
Dr. Eric: The list is long... I'll have to get back to you on that... one of the problems with herbs is that the dose can vary from one preparation to another... depends on who ground them up and concocted them
Ed Moderator: sometime down the road. I def want to post and pass onto the VF as a possible topic
Teri: Canadian Adverse Drug Reaction Monitoring Program
Dr. Eric: that's why I asked if they were standardized in Canada... they aren't in the USA Teri, how do I find those data? There is a good site that shows how badly herbs are standardized... consumerlab.com Contact them at 866-234-2345 or fax 866-678-6789 no web site? how did your mother find out about this? Did she call them?
Teri: Can't find website email email@example.com No she looked up the address to report the adverse drug reaction.
Ed Moderator: Teri...is your Mom's doctor aware of the other therapies she is getting
Dr. Eric: I'm looking at the Health Canada website... I don't see anything...
Teri: She had rhabdomyolysis. Yes. Except the turmeric & bromelain, but she is taking them for the pain she has from gout.
Dr. Eric: Rhabdomyolysis is associated with statins... but that has nothing to do with vasculitis
Teri: But it does have to do with kidney damage? Why was Baycol taken off the market? (a voluntary withdrawal) Did a lot of people die?
Dr. Eric: Teri, ANY herbal can interact with ANY real drug and cause a bad side effect... the doc need to know EVERYTHING that she is taking...
Teri: I'll tell her that!
Dr. Eric: there has also been an increased use of herbal remedies. Couldn't that be the cause of the increase in vasculitis?
Teri: She does love popping pills, thinking she'll end up feeling 20 again.
Ed Moderator: you're scaring us, Teri...:-)
Dr. Eric: There were 52 deaths, so it was taken off the market... how many herbals have been taken off the market because patients died?
Teri: I don't know of any.
Dr. Eric: that's because there is no surveillance of herbals like there is with pharmaceuticals...
Ed Moderator: So is there a big difference in what is regulated as far as herbal therapy between our countries. I mean, there is no regulation here, but there is in Canada?
Teri: Yes. It is regulated by Health Canada.
Dr. Eric: how many people took Baycol? What was the use/risk ratio?
Teri: All of the herbal remedies are tested through double-bind tests.
Dr. Eric: what was the risk of Baycol over other statins?
Ed Moderator: Now I'm unclear on the term regulated. Does this mean they are
studied and tested....either here or in Canada?
Dr. Eric: Teri, do you have a reference to a double blind test of turmeric for vaculitis?
Teri: No not offhand. I'm employed at a nuclear station.
Ed Moderator: You're not working the switches right now, are you Teri?? I'm just kidding.. actually good on ya.. important job
Teri: My mom though, is scrabbling for something to reduce her inflammation.
Ed Moderator: The FDA regulates here - that means they deem what is safe to put on the market
Dr. Eric: how do you know there were double blind studies? I do medical research for a living, and I've never seen one
Teri: Prescribed anti-inflammatories are a no-no for her. She looked it up in her vitamin bible.Teri:
Dr. Eric: Teri, that is a problem for many vasulitis patients, but the herbals may be doing more harm than good... they are NOT well studied in vasculitis
Teri: Do you think they should be?
Dr. Eric: I don't see why they should... that doesn't work for any other real medical condition...
Teri: Anti inflammatories? Do they not?Teri:
Ed Moderator: You mean she can't tolerate anti-inflammatories, Teri?
Teri: That's right ed. What with the vasculitis and all... Her kidneys can't process them
Ed Moderator: Question..and maybe I'm missing the obvious here..but if herbal remedies are not regulated here in the U.S. but they are in Canada. is that the same as one system saying it's safe to take them and they help and another system saying they don't do any good
Dr. Eric: why would her kidneys be able to process the active ingredients in herbs if they can't process drugs? I have never seen any credible evidence... give me some references No, they are not even looked at in the US... the FDA says take any herbs you want... but then they regulate the pharmaceuticals... it's all political
Ed Moderator: So to be the devil's advocate for a moment...
Dr. Eric: why does your mother believe her vitamin bible, but not real medicine?
Ed Moderator: If the FDA won't regulate (which I assume means to study them) is there not a chance they may have some benefit
Teri: She feels she's been deceived by big PHARMA.
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