PAN / Vasculitis Chat

DATE:  Jan 18, 2009


Ed:     PSN Moderator

Dr. Eric Hoy - Immunologist
Deanna: PAN Group Member

Karen: PAN Group Member

Maggie: PAN Group Member


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, 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.

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