PAN / Vasculitis Chat

Date: December 11th 2010

Participants:

Ed: PAN Support Network Moderator

Dr. Kathy McKinnon: Guest from the Pittsburgh Vasculitis Center

John: PAN Group Member

Joe: PAN Group Member

Peter: PAN Group Member

Ed Moderator: Just talked to Dr. Kathy and she will be joining us around 10 min after 8. 

Ed Moderator: so you're feeling worse today are you?

John: yup. I think its weather plus half a tooth fell out and realization I got this thing called PAN

Ed Moderator: So sorry to hear you're having so much discomfort

John: bad karma :)

Ed Moderator: well, I think it's GOOD karma that you found our group

Ed Moderator: Well, hello Joe

Joe: hello

Ed Moderator: Welcome to the PAN Chat which will be staring in a few minutesJoe..is this your first time here.  And where are you from?

Joe: yes my first time.  I'm from New York.

Ed Moderator: And Peter!  The Strongest Man in Australia!!

Peter: Hi Ed not so strong at present

Ed Moderator: Peter Merrett....who has been through hell and back with PAN

Joe: I wanted to talk to the rheumatologist

Peter: just out of hospital from a three week stay

John: are you, Peter, in Aussie?

Peter: sure am. How are you doing and welcome to the group..
 l don't know what l would have done without this group

John: you been in hospital Peter?

Peter: yeah for the past three weeks

John: what was wrong?

Peter: my pan flared and in turn my sjoegrens flaired. lost 12 kilo's in the time l was in the hospital

Ed Moderator: we'll start in about two minutes guys..hopefully Dr. Eric will join us

Peter: I have been hit for a six (sorry cricket term) by this setback and will require surgery

John: what surgery Peter?

Ed Moderator: hit for a six...that means a bad setback, eh?

John: yes Aussies play cricket - rather better than the folk who invented the game

Peter: Removal of my bladder and my bowel plus two hernia's in the groin. It sounds worse than what it is but l have been left with no alternative

John: is this a result of PAN ?

Peter: all the result of untreated pan etc.

Ed Moderator: John...Peter is one of those people who I was talking about last night.  He went through doctor after doctor.   Specialist after specialist but finally, thank god, found a good rheumatologist

Ed Moderator: Hi Dr. Kathy

Dr. Kathy: Hello everyone!

Ed Moderator: It looks like it might be Men's Night with one lovely lady . Before anything else..let's do a quick intro. My name is Ed and I'm the director of the PAN Group. Joe, go ahead

 Joe: I'm Joe and am new to this

Ed Moderator: tell us a bit...do you have PAN? If so, how long?

Joe: I had pan 40 yrs ago

Ed Moderator: and how you are doing now, Joe. thanks

Joe: always thought I got rid of it.

Ed Moderator: Joe, are you under treatment now?  Meds?

Joe: No, had PAN at 10 took meds for about 8 yrs

Ed Moderator: Okay, thanks.#   John, you're up..a little bit about you

John: I am John 59 in UK.  No diagnosis but have symptoms which might be PAN

Peter: sorry Ed l have to go as l can't sit up due to pain. I am very sorry as l wanted to join in today

Ed Moderator: sorry, Peter.  Hey mate, go easy and drop a line

John: yes take care Peter

Joe: take good care

Ed Moderator: So we have two new guest here..and Dr. Kathy.  Dr. Kathy is a rheumatologist at the Pittsburgh Vasculitis Center... and a frequent guest with us. So I will open up to questions.  If it's okay I'm going to let John have first go

John: I am not diagnosed but have PAN symptoms. have seen 12 specialists but not a rheumatologist.

Ed Moderator: You currently have testicular pain, right?#

John: have neuropathy, joint pain, testicle pain, funny body odor, urine odor. I did have kind of spots on nose like acne for ages, but not now.

Ed Moderator: Dr. Kathy, John is from the U.K.   Just a point of reference

John: all my blood are negative, ESR CRP ANCA negative, FBC ok, urine clear, eGRF not great - it varies 58 to 72, up and down. Creatinine at high end of normal range

Dr. Kathy: Can you get to U Cambridge?  Dr. David Jayne there specializes in vasculitis.

 John: I could be is winetr am its 100 miles. I have found a rheumatologist in Chester near to me

Dr. Kathy: Good, if you haven't seen one yet, that is the best next step. We are used to dealing with diseases like PAN

John: don't ALL rheumatologist know about vaculitis?

Dr. Kathy: Some rheumatologists are more familiar with vasculitis. Since these conditions are rare they are most often treated at tertiary care centers or university centers.  My colleagues in the community often tell me that they refer vasculitis patients to these centers.

Ed Moderator: Kathy..what do you make of his test results being okay, or normal

Dr. Kathy: that can be difficult to diagnose. Test results in PAN can be negative.

Ed Moderator: is this common?

Dr. Kathy: Not uncommon.  Biopsy or angiogram are often most helpful in diagnosis.

John: usa rheumatology folk have 10 criteria and only 2 of those are blood tests so you are saying Kathy, you can have normal ESR and CRP yet have PAN?

Dr. Kathy: yes you can have normal inflammatory markers especially between episodes of disease activity.

John: bugger :) My GP is wrong then  as ever

Dr. Kathy: Don't be too hard on GP.  He is right that many people have elevated inflammatory markers.  but we have seen people that have normal markers too.

Ed Moderator: John...you mentioned trouble with kidneys.  What is going on there..are you having pain

John: no.

It's just eGRF fluctuating - angiogram is none invasive?

Dr. Kathy: angiogram is invasive-catheter used and dye injected.

Ed Moderator: So, Kathy, if he goes to a rheumy what should he expect.  Would the tests be done again and evaluated?

Dr. Kathy: They may recommend angiogram, nerve and muscle studies, even nerve/muscle biopsy.

John: he's going to do angiogram Ed- I had NCV tests- have you come across the testicular pain before,  Kathy?

Dr. Kathy: Testicular pain one of the criteria for PAN, we have seen it.

John: are there stages / levels of severity kathy?  As in kidney failure stage 1 to 4

Dr. Kathy: intrinsic kidney disease not common.  Involvement of renal arteries is in PAN.

John: what would be symptoms of renal artery involvement be Kathy?

Dr. Kathy: renal artery involvement could manifest as high blood pressure, varies from person to person.  some present with mild disease, some with very severe disease right away

John: mine has been coming on for 2 years

Dr. Kathy: Most patients I've seen with PAN have become very sick within a shorter period of time if not diagnosed

John: how high? Mine has been high for years

Dr. Kathy: out of normal range, may be difficult to treat (require multiple medications).

John: I was on bendroflutahmiazide - very bad for kidneys

Dr. Kathy: I think something used in UK, not something I'm familiar with in US.

John: when you say people with PAN get very sick very quickly.  How sick how quickly

Dr. Kathy: Most patients I have seen are hospitalized in a matter of weeks, months at the most.

John: well I been quite ill but walking around for ages,  Are there automatic remissions of untreated PAN or does it just get worse? My joint pain did get better

Dr. Kathy: Would be unusual, I have not seen it go into remission on its own.  Other diseases can spontaneously remit but PAN not common to do this.

Dr. Kathy: Most patients get treated, or get worse.

John: so have you diagnosed Pan  a lot Kathy?

Ed Moderator: Joe, I will have you on deck shortly.  I just wanted John to get some time with Dr. Kathy because he's in bad way

John: how many cases have you seen and what would you use as the definitive diagnosis?

Dr. Kathy: PAN uncommon in US now.  I've not seen more than 20 patients with PAN.  Majority of patients in US have Wegener's, microscopic polyangiitis, or giant cell arteritis

Ed Moderator: And Kathy...it's also possible John could have overlap of vasculitis too?

John: but is PAN the only one with testicular pain?

Dr. Kathy: he could have another form of vasculitis, or another rheumatic disease.  PAN is not the only disorder that can affect testicles, other blood vessel diseases could do this as well.

John: ah ok

John: can you fly here now kathy ?LOL

Dr. Kathy: Sorry I missed you on my last trip over! :)

Ed Moderator: But again the key is that John needs to see a rheumy ASAP

John: what would be the definitive diagnostic criteria?

Dr. Kathy: I agree, rheumatologists are most familiar with these diseases. . I would assume that you've seen a urologist already?

John: yes I had 2 testicular scans

Dr. Kathy: ok good.

John: he drew a blank - idiopathic !!!!!!!!!

Dr. Kathy: well important to eliminate other causes.

Ed Moderator: Is there typically swelling in testicles, or can they appear normal despite the pain?

John: but I do have lots of vasculitis symptoms

Dr. Kathy: Can have pain without visible swelling.

John: they seem a bit large to me but I don't know. The doctors said not swollen, but there are surface dark veins which isn't good

Ed Moderator: Well, John, we have resources to connect you with a rhuemy if you need it.   Dr. Jayne is tremendous, but maybe someone closer.

Dr. Kathy: Rheumatologists are good at putting together symptoms from multiple organ systems, like you have.

John: at last :): other specialists are in a silo

Dr. Kathy: glad you're getting things going with your local one.

Ed Moderator: John, I hate to cut off, but I'm going to let Joe in here.  I will be happy to forward more questions to Kathy via email.

John: no one coordinates

Dr. Kathy: I agree lack of coordination is a huge problem, this is universal!

Ed Moderator: I'm really, REALLY happy you contacted us when you did, John

John: yes me too Ed

Ed Moderator: I think you're on the right track now

Ed Moderator: so, Joe, you had PAN 40 years ago?

Joe: I had PAN before they called it PAN

Ed Moderator: If I may ask..how old are you now.  Just for perspective.

Joe: I was 10 when i had PAN and I am now 52

Ed Moderator: I remember you said that it really took a toll on you at that age.  What specific symptoms back then?

Joe: I went in the hospital for a normal 4 day operation. I was told it was twisted testicles. I caught an pneumonia, had constant temp for 6 wks and was in a coma. I am Catholic  had last rites twice.  Then they did a biopsy on a boil on my stomach and diagnosed it as polyartheritis nodosa. They gave me prednisone and basically recovered.

Ed Moderator: I found that amazing they nailed it so quick and back THEN! Kathy..isn't that amazing they diagnosed so quickly at that time...and look at John...12 specialists

Dr. Kathy: yes, he had very astute doctors taking care of him.

Ed Moderator: Joe..tell about this boil

Joe: not sure of full story

Ed Moderator: did you have them everywhere?

Joe: not sure but a small bump on left side about 10 inches right of belly button

Ed Moderator: So you essentially have been in remission for all these years

Joe: I thought I was cured

Ed Moderator: You asked me if PAN can come back again...and what could be triggers

Joe: I do have some symptoms. About 2 years ago my face broke in a rash on my neck. Just before that I fell jet skiing in ocean water I thought it was that. Now  more recently I get rashes between my legs especially in the summer. But I do physical work so I chalk it up to that

Ed Moderator: Kathy...what advice for Joe or someone like him.  Free of PAN for many years but concerned about these type of symptoms..

Dr. Kathy: Symptoms should be checked out when they are out of the ordinary-ok to start with PCP if you have a good one. But if they can't figure things out time to see a rheumatologist.

Joe: now very recently I feel a twinge in groin area  but again I thought it might be a hernia

Ed Moderator: There's always a chance for relapse in PAN, right?   Are there any typical symptoms that happen if a relapse is coming?

Dr. Kathy: Relapse after this long of a period of time unusual but possible. Symptoms are nonspecific, if treatment for other conditions caused them to resolve than I think less likely PAN related.

Joe: I was thinking maybe I should see a rheumatologist anyway  what do you think

Ed Moderator: So our big discussion this week was...can you be cured of PAN?   Or is it just considered a long remission?

Dr. Kathy: Some patients with vasculitis have only one episode (monophasic disease) but we can't identify or predict who they will be. So it is best to see rheumatologist periodically for disease surveillance. Picking up relapse early always better. And if you come in for "boring" visit I never mind those, glad to see people staying healthy!

John: I would hate to be boring LOL

Dr. Kathy: when it comes to relapse of vasculitis, boring is good! :)

Ed Moderator: John, I imagine you can't WAIT to be boring again...LOL

John: yes I was being ironic Kathy:)

Ed Moderator: always be alert to unusual symptoms that come up after the PAN is gone...keep it on your radar

Joe: how do I find a rheumatologist

Dr. Kathy: Where are you?

Ed Moderator: Joe, I think it would be wise to just have a rheumy visit to be safe.

Joe: NY

Dr. Kathy: I have patients coming from New York, have heard you have a shortage of rheum there? maybe best to start with insurance company-ask for a listing of who is covered on your plan then ask your PCP about the list and who he/she would recommend.

Joe: Dr Kathy  I lived a normal life since I was younger.  I do physical work for 30 yrs. I work for UPS

Ed Moderator: and Joe, I'll put you in touch with some connected with Vasculitis Foundation. Go John!

Joe: I will go through my insurance and take it from there first. Kathy - I been having ocular migraines for about 4 years or more Could this be vascular in the brain?

Dr. Kathy: Migraines are vascular headaches by definition, so doesn't mean that they are due to vasculitis

John: also, is it the case that vaculitis is a very long onset or comes on quickly

Dr. Kathy: but I have seen them in patients with lupus, Sjogren's, clotting disorders, so they can be associated with rheumatic diseases.

Joe: I had those headaches after I came out of hospital

Dr. Kathy: Vasculitis (like PAN) most often acute or sub acute in onset.

John: what does sub acute mean Kathy?

Dr. Kathy: sub acute means matter of days to weeks, not acute onset.

Ed Moderator: I once had a sub teacher who was cute..Sorry..:-)

Dr. Kathy: so she would be sub acute too!! :)

John: I had microplasam pneumonia in 2007

Ed Moderator: Guys sorry to wrap it up but Dr. Kathy is a new mother and I don't want to keep her

Ed Moderator: We really appreciate you coming in tonight, Kathy


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