PAN / Vasculitis Chat

Tuesday, May 9th, 2006

KEY TOPICS DISCUSSED: 
Hidradenitis / RAVE

Participants:   

Ed: PSN Moderator
Dr. Eric:PSN Chief Medical Advisor / Immunologist
Earl: PAN / Hidradenitis Patient

Earl: Hi Ed Doc, I have great news I now know what the name of another one of my diseases is called Hidradenitis. I m Earl from Warrington. I have the disease that I was asking you and everyone else about months ago.

Ed_PSN Moderator: I'm not familiar with the disease you mentioned, Earl.Eric..have you heard of it?

Earl: It collects puss in pockets and slowly goes back into the body or pops and smells like rotting garbage but it's not in my body.

Dr. Eric: Yes, as I recall it is an inflammation of the sweat glands

Ed_PSN Moderator: You did complain of profuse sweating Earl. How are they treating it? What did they operate on? Are you on meds now?

Earl: I see a nurse to change the bandages on my neck with Mesalt and clean the skin with Sea Cleanze. They used saline before that.

Dr. Eric: It's not really a vasculitis, but it may involve a defect in the T cells, so it does have an immune component

Ed_PSN Moderator: does it occur in conjunction with other vasculitis diseases, Eric?Sometimes part of another disease package? I'm curious because I read so often about folks complaining of profuse sweating

Dr. Eric: Not a vasculitis package, but other skin symptoms

Earl: I used to take an antibiotic but I don't that I was told it was part of the family history but Mom says no one had it before me

Ed_PSN Moderator: Fairly treatable, I take it? Topical treatments mainly, or meds

Dr. Eric: Usually topical, as I recall, but I don't think I've ever seen a real case, so I'm not an expert.

Earl: Topical treatments didn t work for me the cysts were down to deep in the skin.

Ed_PSN Moderator: You were really suffering with just not knowing. Are you seeing or feeling any improvement?

Dr. Eric: usually topical, as I recall, but I don't think I've ever seen a real case, so I'm not an expert.

Earl: I also have PAN.

Ed_PSN Moderator: Oh sorry, I didn't realize that. Wasn't sure if you got a definite diagnosis on PAN

Earl: Yeah, well it's good to know the names of the pains in my body now

Dr. Eric: Yes, Earl, just knowing what it is, and that it's something real is very important. Even if it's as rare as PAN. I love questions about things that are not frequently seenDr. Eric

Ed_PSN Moderator: Eric..switching gears for a second. I wanted to discuss Rave. Sorry, what is RAVE?

********** at 8:53 PM Earl left the room

Dr. Eric: It is a study on treatment of vasculitis (mostly WG, I think) that was started by Dr. Specks at Mayo, but is a multicenter study looking at a new drug.

Ed_PSN Moderator: Okay, now it sounds familiar. I remember Dr. Specks was behind it. So it has implications for other diseases. What else was exciting to you...good news?Ed_PSN Moderator:

Dr. Eric: They have several other studies in the works. The Dr. EricVCRC longitudinal studies they're coming along well, aren't they. Fairly good response overall?Dr. Eric. Yes... looking for the numbers in my notes... seems to me only 1 or 2 PAN ptsDr. Eric. Total of 34 pts so far... we talked about some of the limitations

Ed_PSN Moderator: Really? That's a bit disappointing. Maybe I'm thinking of the registery..I know at least 30 signed up for that. What are they Eric? Limitations?Ed_PSN Moderator:

Dr. Eric: 73 for the registry but 34 in the actual studies where they go to the center for bloodwork, etc?. Patients have to come in every month for the first year... some visits are only blood work, and some are seeing the doc... It can be a long ride for a patient to just have blood drawnDr. Eric

Ed_PSN Moderator: Yes, that's true. So hard on someone already so ill. I think Angel Flight is helpful there... but it's a matter of "selling" it to the patient too. Convincing them it's worth all the trouble of getting there. Well, Eric, I think we can jump off here. I'll catch up with you. Thanks for joining us tonight.

Further Reading on these terms:

1. Hidradenitis (http://www.emedicine.com/emerg/topic259.htm)

2. Mesalt (http://www.directmedicalinc.com/wound/mesalt.html)

3. RAVE (http://www.immunetolerance.org/RAVE/)

4. Dr. Specks (http://ndc.mayo.edu/mayo/research/staff/specks_u.cfm)

5. VCRC (http://rarediseasesnetwork.epi.usf.edu/vcrc/index.htm)


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