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Participants:
Ed: PRSN Moderator
Dr. Eric Hoy - Immunologist
Deanna: PAN Group Member
Karen: PAN Group Member
Maggie: PAN Group Member
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Ed Moderator: Hi Eric..
Dr. Eric: Hello, Ed!
Ed Moderator: Hello Karen, welcome
Ed Moderator: Hello Maggie! Hello and welcome to the group
Maggie: Thanks, Ed. Good to make contact...
Ed Moderator: So glad to have you here after all this time Karen, are you new here?
Karen: Yes, I am new. I got Vasculitis in 2002 and was diagnosed in 2003. As a baby, I was radiated for an enlarge thymus and I am wondering if that is connection or coincidence.
Ed Moderator: Dr. Eric..Any thoughts?
Dr. Eric: Possible connection... no one is sure, but that was common practice years ago... the thymus is a source of important immune cells.
Maggie: I haven' t run across anything in my Medline searches. They irradiated my throat for a severe tonsil problem and suspected rheumatic fever when I was about 7 years old. I think it may be related to my thyroid problem, Hashimoto's...
Karen: No, primarily because I am a hybrid but PAN matches me so to speak. Yes, I knew the thymus was connected and in my mind there seems to be a connection.
Karen: Of course, I don't know that cause is as important to me as management.
Dr. Eric: Karen, at this stage management is important.
Karen: Interesting, I work with a cardiologist and nephrologist and they consult with the Mayo clinic as I am in Seattle.
Dr. Eric: Mayo is great!
Karen: I do not know of any Vasculitis specialists in the northwest and feel I was lucky to have my life saved in the nick of time given heart failure and kidney failure.
Dr. Eric: Maggie, we had a very active member of this group, Linda. She had Sjogrens, an immunodeficiency, vasculitis, and possibly lupus... she had radiation to the thyroid as a child and felt there was a connection#
Dr. Eric: Maggie, I'm not sure there is anything in the literature, but we have seen a number of patients who had radiation to the neck or chest as children.
Maggie: Vasculitis patients specifically?
Dr. Eric: Maggie, autoimmune in general... several with Sjogrens.
Maggie: Ah! I have PAN, Sjogrens, Hashimoto's thyroiditis, type I diabetes, autoimmune anemia. Perhaps it is an important clue.
Maggie: Eric, that is very good to know. I will now take this connection far more seriously and do some studying up on the subject.
Maggie: Hey, Deanna! Long time...
Ed Moderator: Hello Deanna!!
Deanna: Hi ALL!!
Maggie: Nate will be on in a second. He's kind of tied up in the game and with a new puppy, Alaskan Malamute 8 wks to be a care dog.
Ed Moderator: Just to let folks know...Both Maggie and her son have PAN.
Ed Moderator: Deanna great to have you with us.
Deanna: I've had two rounds of Rituxan(4) altogether. Starting my next round (2) in Feb. I've had GREAT results, except now I have 3 tumors on my throat. Hoping not Rituxan related.
Deanna: One tumor is bigger than the left thyroid lobe. The other two are on the ishmias? Not thyroid related though.
Maggie: Yikes Deanna, hope not too. Good you got yr rituxan, though.
Karen: How do you feel Deanna?
Deanna: But, the thyroid gland will have to be removed. Aspiration biopsy was inconclusive - showed some cancer cells....but not enough to make a full determination
Maggie: Deanna, good luck with that. Doesn't sound like a good thing...
Deanna: My MPO, ANCA last March were 1264, then in Sept 640 then in Nov 160...Rituxan seems to be working
Deanna: may get to neg
Dr. Eric: Deanna, the good news is that you can live without a thyroid... just one little pill every day replaces it.
Deanna: the things that make you go HMM...I'm having more good days than bad...woo hoo...still guess I'm having a double whammy of PAN and Thyroiditis...so, a lot of the same symptoms...ughhh
Maggie: Nate & I are still deciding whether to get the Rituxan, doing better now, so more of a decision than when we were really down and out.
Deanna: YEAH...and once, if cancer, removed, it's gone for good, not usual to metastasize.
Deanna: Maggie, it looks like the Rituxan is doing its job for me...
Maggie: Whew Deanna! Sounds manageable than much you have been through already.
Deanna: Sorry to just jump in and take over conversation...I'm elated about the great results I'm having and a bit concerned with the new garbage...but heck, I feel better than in a long time.
Maggie: Wonderful, Deanna. So what's the main subject for tonight? With so many of us on we can have a lot of fun and very informative with Dr. Eric and Ed onboard.
Karen: I was diagnosed in 2003. I have a hybrid, but close to PAN so I have been following the Blog because I need more info. My doctors are very open and willing to learn more because they have treated very few with vasculitis.
Maggie: Karen, have you been lucky enough to get positive biopsies or angiograms? Is your hybrid a mix of different types of vasculitis? My son and I both have PAN w a Wegener's "overlap"#
Karen: My Anca is normal after treatment, my heart is pumpling around a calcification in my heart muscle, my kidneys are between stage 3 and stage 4, but with that all said I feel well and returned to teaching high school full time.# shorter sentences next
Ed Moderator: Where are you from, Karen?
Karen: Seattle
Ed Moderator: what were or are some of your symptoms, Karen?
Karen: edema, neuropathy feet and legs, use a cane, run out of energy.
Ed Moderator: I'm the designated dummy here..:-) What is edema?#
Dr. Eric: excess fluid in the tissues. common in vasculitis and many other conditions.
Ed Moderator: Is that something typically connected to PAN or vasculitis?
Deanna: may I ask your age, Karen?
Karen: 66. connected to heart and kidney failure.
Deanna: It is for me, also due to kidney disease, high b/p, PAN lots of edema.
Ed Moderator: Is this because kidneys aren't eliminating and fluid builds up?
Maggie: Yes, edema is very common in PAN. I have real problems with it.
Karen: first presentation was fluid in my lungs.
Dr. Eric: Ed that is part of it... some medications (pred) can also increase it.
Maggie: Most definitively related to malfunction of body systems in general and to kidneys, yes.
Maggie: I had edema first in hands, wrists, lower legs and feet. Later became systemic.
Ed Moderator: Karen, what was your treatment for vasculitis?
Karen: pred IV and oral along w/IV and oral chemotherapy for a year.
Maggie: Karen, cytoxan (cyclophosphamide) or other?
Karen: yes cytoxan.
Maggie: Karen, RU still on the one year oral?
Karen: no pred, beta blocker, blood thinner, water pill, also Linospril.
Maggie: What is Linospril?
Dr. Eric: Linosipril is for high BP.
Karen: I actually have low BP, but protects kidney.
Maggie: Karen, what is your age and when did U first get sick? I am 62 and got sick when I was 36.
Karen: I am 66 and got sick on 60th b-day.
Ed Moderator: Folks, since we're coming up close to the end I'd like to.... just do a short roundtable and check in with each of you..
Ed Moderator: I'd like to ask Dr. Eric a few things. I really appreciate you all coming and wish we had more time, but it gets a bit tight...
Ed Moderator: Any specific questions we can address.
Maggie: What would be the first indication of mild kidney involvement?
Ed Moderator: Dr. Eric? Good question from Maggie.
Dr. Eric: Maggie, blood or protein in the urine (dipstick positive).
Maggie: Is the edema and isolated bouts with high BP be connected?
Dr. Eric: Maggie, possibly, but there are other things that can cause high BP and edema.
Karen: No kidney symptoms, silent except for blood test.
Ed Moderator: Dr. Eric...before we leave, any news from the autoimmunity, vasculitis world?
Maggie: High creatinine with some urine sediment can be the only signs of serious involvement.
Ed Moderator: Any developments, tests or other things we might be looking for this coming year?
Dr. Eric: Ed, I'll let you know at the next chat... I leave Tuesday for a conference in Sweden.
Ed Moderator: Wonderful, that will be great.
Karen: Thanks for chat.
Ed Moderator: Good luck there. Is it connected to patent on the test you have worked on?
Dr. Eric: A company is coming out with an improved ANCA test, but it still depends on having a good lab doing the test.
Ed Moderator: Glad to have you hear, Karen. It seems a bit chaotic, but we clean up the transcript and publish to group.
Maggie: How reliable is the current ANCA test?
Dr. Eric: Ed, yes, I am presenting data on the new test system.
