PAN / Vasculitis Chat DATE: Jan 30, 2010

Participants:

Ed: PRSN Moderator
Dr. Eric Hoy: Immunologist
Gail: PAN Group Member
Danielle: PAN Group Member
Jess: PAN Group Member

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Ed Moderator: So how are you doing these days? What's new and exciting? Any trips planned?

Dr. Eric: Same old stuff... and its cold here . Going to California in 2 weeks, and Panama City, FL the end of the month

Ed Moderator: Panama City? No kidding? What's going on there?

Dr. Eric: The southeast meeting of the American Medical Technologists

Ed Moderator: Now what group would this be? Lab techs mainly?

Dr. Eric: Yes, I'm talking about ANCA testing, and the right way to do it

Ed Moderator: So great for you to join us Gail, we missed you!

Gail: Hi! You two

Ed Moderator: It has seriously been like two or more years

Gail: I didn't think it had been that long!

Ed Moderator: so bring us up to date, Gail

Gail: Some symptoms may go away but the stuff just sits there and eats at you

Ed Moderator: What are some of your current symptoms?

Gail: I've had some heart problems, lots and lots of back problems and now the latest is asthma

Ed Moderator: heart problems related to vasculitis?

Gail: I could be all wet but I think that they are the result of pred. leaving bones less than strong--- blood vessels with permanent damage that doesn't show up until the damage becomes worse, etc.

Ed Moderator: Eric, can you give some layman explanation on why pred or any steroid for that matter does that to bones?

Dr. Eric: Pred sucks calcium out of the bones... that's why you should take calcium and vitamin D when you're on pred , also something like Boniva or Fosamax will help to preserve the bones

Gail: You know, no one told me to do that nor did they tell me what could happen

Ed Moderator: once you go off pred can you regain that calcium back...

Gail: I worked with free weights for a year and took mega doses of calcium.

Dr. Eric: weight training and lots of calcium are a great way to regain the bone menopause also reduces the calcium in bones; also PAN with menopause is a double-whammy

Gail: Today the bones are their normal strong self. I started surgical menopause in early 40's

Ed Moderator: someone asked me that once if the bones are perm weaker

Gail: But you got to work hard to regain what you had

Ed Moderator: hello dcastor07. Welcome to our pan chat

Dr. Eric: not permanent, but it requires a long time to get back to normal

Danielle: Hello...thank you

Ed Moderator: we're with Gail, a Pan patient and Dr. Eric Hoy, immunologist. what is your first name and are you a new member? Ed Moderator:

Danielle: my name is Danielle and yes a new member. I have Cutaneous PAN

Ed Moderator: and I'm Ed the moderator who thinks the Super Bowl is tonight..:-)

Gail: welcome to the best place on earth ---for PAN

Dr. Eric: I have seen from your posts that you also have some systemic problems

Danielle: I think maybe I do....but not sure...

Gail: Danielle, I am in remission from cut. PAN

Danielle: I am at this time too...thank the Lord!

Dr. Eric: what are your symptoms when you are flaring?

Danielle: I have fevers that are pretty consistently. But the other symptoms vary from the flare...

Gail: just to let you know that it invaded your body at one time

Danielle: Such as I have had my left arm effected, my ear, and a hole in my colon

Dr. Eric: are the fevers at night, or all day long?

Danielle: mainly in the morning and evening....but when it gets worse all day long

Dr. Eric: have you had an abdominal angiogram?

Danielle: don't think that I have ever had an angiogram...what is it exactly?

Gail: If you haven't----get one

Danielle: I have had so many tests

Gail: Eric, you describe an angio gram

Dr. Eric: they inject some dye, and then take X-rays to see if there are problems with the blood vessels. They can see constrictions, blockages and anurysms

Ed Moderator: it's fairly non evasive overall, right Dr. Eric?

Dr. Eric: Danielle: I think they might have, but I have never heard it before reading posts on here....that term...do they also call it a cat scan or is it totally different? - yes, just a needle in the arm (usually with an IV), and some X-rays... now there are MRI techniques that can see the same things

Gail: It's such a necessary test. PAN can be sneaking and destroy some areas of the organs of the abdomen. You must find out if there is something before it's too late.

Dr. Eric: it might be called an abdominal MRI or CAT scan

Ed Moderator: Dr. Eric...a diagnosis of PAN is never made on an angiogram alone, correct?

Dr. Eric: that's correct Ed, there can be other things that give similar vascular problems

Danielle: then I probably have had one yes....I know I have had dye in a test....

Dr. Eric: then that was probably the angiogram

Danielle: to diagnose me they took a biopsy of my nodule

Dr. Eric: do you have any kidney problems?

Danielle: I have a horseshoe shaped kidney but otherwise no

Dr. Eric: the biopsy and the angiogram together are the best way to make the diagnosis

Ed Moderator: Danielle....you mentioned that you are getting Remicaid infusions. How long have you been getting them and how are you responding?

Dr. Eric: Is that jess (gerblahblah)?

Jess: yes.

Danielle: I have been taking it for about two years....

Jess: hi

Dr. Eric: Danielle, how often do you get it?

Danielle: I get them every 8 weeks. Since I have been on methotrexate too I'm not sure how successful it has been

Ed Moderator: how are you tolerating these treatments Danielle? What are side effects?

Danielle: I have been able to go longer from treatment to treatment . I haven't noticed any side effects other than being tired that evening and the next day from the infusion

Gail: YOU SEE, IT'S GETTING BETTER ALREADY

Dr. Eric: Danielle, that is very common... you're not alone

Jess: I miss remicade minus the gross hair part :[

Ed Moderator: Gail. did you ever have Remicaid? How about you Jess?

Gail: not for me

Ed Moderator: ahh, you gave me the answer. Gross hair, ughgh

Danielle: gross hair?

Dr. Eric: Jess, what did the Remicade do to your hair?

Jess: well I color my hair, because I'm a natural blonde and I look better as a brunette. It turned it funky and it made it thin and gross looking, very damaged

Danielle: really...I color my hair...highlights and it hasn't changed it made my roots look orange.

Ed Moderator: have you heard of that happening as a result Dr. Eric?

Gail: Iost all of mine@@@@

Dr. Eric: did it come back normally after you were off Remicade?

Jess: somewhat. I'm still on some medicines. so my hair is still a little different, but it looks 102139102381289312 times betterJess:

Danielle: So not seeing any change with the remicaid is normal?

Dr. Eric: Not with Remicade, but I only know a few patients who have had it. Orange roots might be kind of nice....

Danielle: lol

Gail: Eric, why don't you try it sometime and let us know what you think Ha

Ed Moderator: LOL...

Jess: orange roots were horrible :[

Danielle: I'm from Indiana...I go to IU

Jess: especially when you're in school and people would make fun of you

Dr. Eric: he he... mine is rapidly headed to grey

Ed Moderator: I'll settle for having hair at my age...any color is fine

Danielle, you may have already mentioned but where are you from and where do you go for treatment - the clinic or hospital?

Danielle: sorry IU hospital...it's a research hospital in Indy

Jess: I'm young hair is important

Gail: Eric, you need to visit your hair dresser for color

Dr. Eric: Jess, one of my students who is a natural redhead tried to dye hers blonde... It looked like a Granny Smith apple.

Ed Moderator: You're right, Jess. I can totally understand that

Gail: I'm old and hair is important

Danielle: has anyone heard of getting pregnant with PAN?

Dr. Eric: Danielle, yes, there have been pregnancies

Ed Moderator: Are there any particular risks Dr. Eric?

Jess: but your student probably doesn't have a dented leg. I'm already self conscious enough I don't need to be Ronald McDonald's counter part

Ed Moderator: No, I know what you mean. Like with me, who wants a small heart attack. There's no such thing

Dr. Eric: Yes, there are some pregnancy related problems that might make PAN worse

Danielle: like?

Dr. Eric: and if the patient is on Methotrexate or Cytoxan, or other drugs, it is a risk to the fetus

Danielle: just the stress on the body? I'm off the Methotrexate now and just on Remicaid. My rheumie says I have to get off the remicaid before I can get pregnant

Ed Moderator: I just saw an article on Remicade and pregnancy.. I'll search it out for you

Dr. Eric: stress, high-blood pressure, gestational diabetes, (my wife added having a husband who won't clean the garage, but that's rare)

Danielle: lol....

Ed Moderator: Jess, how are you doing these days?

Jess: last week I had a sinus infection so my leg flared. but I haven't been too terribly bad since I started college. I have to force myself to go to class though Jess:

Dr. Eric: Jess, do you get a lot of sinus infections?

Ed Moderator: are you currently on any meds, prednisone?

Jess: ehh not really, I've had a few this year though I'm on mobic. for the pan at least, I'm on a bunch of other things too

Gail: The worst about these diseases is that the gen. public has absolutely no idea how bad they are and figure that you can continue as before because you look "OKAY!"

Ed Moderator: Spot on, Gail Ed Moderator: Jess, do you find that a challenge. Your friends or classmates who know your situation

Danielle: it's hard to have a flare and be in school that sucks...I feel for you

Dr. Eric: yes, Linda, RN used to talk about how everyone said, "But you don't LOOK sick!"

Jess: my friends understand mostly because I showed them my leg and then they knowJess:

Dr. Eric: Jess, do you mind if I ask where you go to school?

Jess: RMU

Ed Moderator: Robert Morris University

Jess: yes

Ed Moderator: what are you studying? Business I'm guessing

Jess: I'm thinking about transferring to Pitt or Duquesne graphic designJess:

Dr. Eric: I admire people who are artistic and creative... in science it's all black and white

Danielle: I've got to get up and go to work in the morning with a bunch of little preschoolers so I'm going to say goodnight...thanks for the discussion....talk to you next time maybe

Ed Moderator: ouch, I know. I spent a year there as a photographer. I came to the same conclusion

Dr. Eric: OK, Danielle... If you have questions ask the group... they're great

Ed Moderator: Danielle, so glad to have you with us please keep posting and asking questions by the way, where do you live?

Dr. Eric: Indiana, I think

Ed Moderator: So Gail, would you say you're doing worse or better or the same than a year ago this time

Gail: Hang on If it weren't for the asthma that causes the lungs to fill with fluid, that squeezes the heart and then causes danger to me, I'd be the same

Jess: I'm sure I can get a discount for that.

Gail: Now I'm much worse. But we stay at home where I can get lots of rest, stay out of dusty, places.

Ed Moderator: Gail, who is your rheumatologist and where do you go for treatment?

Gail: Wish I could add "colc" to that "dusty"

Ed Moderator: Jess. if you don't mind, can I ask the same question for you? I'm just curious, that’s all.

Gail: I have a great one but don't see him any more--I think he's listed in the area maps—Eckhoff. Now I see a "lung'ologist

Ed Moderator: This is totally off topic but a buddy of mine who is an occupational therapist told me the nickname of the gastro unit They call it Guts and Butts Ed Moderator:

Dr. Eric: We call them pulmonologists, but one of my friends who is one, said people think he's an expert on Pullman train cars

Ed Moderator: Gail...any chance you might attend the VF symposium this summer? Eric, Jess? You guys?

Gail: so where is it this year?

Ed Moderator: Wait, I know Dr. Eric is!

Dr. Eric: Most of my former students are on there, so it's a good way for me to keep in touch with alumni

Ed Moderator: you're speaking there in fact Ed Moderator: it's in Long Beach, CA

Dr. Eric: Yes, I'll be there Dr. Eric: and leading a roundtable on PAN


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