PAN / Vasculitis Chat
DATE:October 3, 2010
Participants:
Ed: PSN Moderator
Leona: PAN Group Member
Karen: PAN Group Member
Peter: PAN Group Member
Dr. Eric Hoy: Immunologist
Ed Moderator: hello and welcome
Ed Moderator: Hello Leona! Welcome
Leona: Hello Ed
Ed Moderator: so glad you could make it. Is this is your first chat?
Leona: Me too. Just got Leo into bed
Ed Moderator: How is he doing, Leona?
Leona: Leo is still declining, can't walk now, so many questions
Ed Moderator: Is Leo seeing a rheumatologist?
Leona: Yes, but we know he isn't what Leo needs now. Is he at the point to stop the meds and make peace with it?
Dr. Eric: hello, everyone!
Ed Moderator: Thanks Dr. Eric. I was starting to sweat that I was going to play a doctor! Dr. Eric, this is Leona. Her husband Leo is a patient.
Ed Moderator: Dr. Eric, how are you doing? What are you doing exciting these days?
Dr. Eric: Still working on newer and better tests for diagnosis, and fighting with the FDA
Ed Moderator: Leona, you are our guest tonight. I know you have lots of questions. First, let's go over some of Leo's situation. Leo does have PAN, correct? A firm diagnosis?
Leona: Yes, Leo does have PAN, diagnosed in Sept.09, ill for 3 years before that time.
Ed Moderator: and currently he is being seen by a rheumatologist? But the problem is Leo isn't getting better, right?
Leona: They did a L femur hamstring area biopsy.
Dr. Eric: What treatment is he getting?
Leona: No, he is not getting better after a year on Prednisone and almost a year on Mycophenolate
Dr. Eric: Have they tried any other drugs?
Leona: Imuran for a very short time, sent the liver enzymes way up(8x). He is on Hydrocodone and gabapentin
Dr. Eric: The gabapentin should help that, but he may need to go to a higher dose than usual.
Ed Moderator: dr. Eric...Imuran can send liver enzymes up? I didn't know this. Until Leona replies---Karen, how are you doing?
Dr. Eric: Ed, it depends on if the PAN has caused any liver damage
Ed Moderator: What are symptoms or problems when liver enzymes go up dramatically? What typically does the patient exhibit?
Dr. Eric: Often there is no outward sign, but the elevated enzymes (a lab test) indicate damage that can be serious.
Dr. Eric: What are his major symptoms?
Ed Moderator: Leona...what are some of Leo's worst symptoms right now?
Leona: extreme fatigue, slight skin rash right ankle, lots of back pain from his bout with shingles & chicken pox.
Leona: I've begun to wonder if he is misdiagnosed
Dr. Eric: Leona is most of Leo's pain from the shingles?
Leona: Not everything adds up.
Leona: Yes
Leona: Leo has really lost a lot of muscle right arm, back, legs
Dr. Eric: Is he getting physical therapy?
Leona: No PT now except what we do ourselves
Dr. Eric: Is he still working?
Leona: No, he is 79, retired in 95
Dr. Eric: what about daily exercise? Walking, working in the yard, etc.
Leona: He was always very strong, active, an optimist
Leona: Leo is bedridden except for short spurts in wc. eyes affected also, can't read now
Dr. Eric: that may be why he's losing muscle. You need to ask the doc about physical therapy.
Leona: His real decline was after 9 days in hospital with shingles
Ed Moderator: Leo got shingles after his PAN dx?
Leona: Yes
Dr. Eric: shingles can wipe out anyone... I had them about 3 years ago, and I still have some pain...
Leona: His wrapped around from mid back to mid abdomen in front plus the chickenpox
Leona: Took the neurologist to diagnose the chickenpox
Ed Moderator: Leona, I may have missed it. where do you live and where does Leo see his doctor. what clinic
Leona: We live in Lake Mary, Fl. No clinic, just the Drs-Rheu, Neuro, Nephro and primary
Dr. Eric: chickenpox and shingles are caused by the same virus, but it is rare to see them together.
Leona: I am just confused about which way to go now
Ed Moderator: I can give you some names of doctors with the Vasculitic Foundation who do consults with your doctor
Dr. Eric: Are the docs in the same group, or are they all independent?
Leona: My doctors have been unwilling to confer. They are all separate. The neuro seems most knowledgeable and willing to talk.
Dr. Eric: Do they talk to each other?
Ed Moderator: Dr. Eric may have another idea, but I think getting a new rheumy..a second opinion from a rheumy is important here
Leona: Very little
Leona: We are in a tough area for rheumys who know
Dr. Eric: I agree with Ed. You need a new rheumy who is willing to talk to the others, and will act as a coordinator.
Ed Moderator: Leona, hang on for a sec. I'm going to check ACR database real quick
Ed Moderator: Where is Lake Mary near? Bigger town
Leona: Orlando
Ed Moderator: Leona, I'm seeing about ten rheumys in Orlando. I can look closer at the list to see if any are connected to VF.
Ed Moderator: Is Leo able to travel at all. How far and how difficult would it be to get to Orlando?
Leona: It's not far(40 min)
Ed Moderator: http://www.rheumatology.org/directory/city.asp?hCountry=USA&cbx Pediatric=&cbxPatientCare=&city=Orlando&state=FL
Leona: We could get him there in my son's van
Ed Moderator: check out this link. It list rhuemys in Orlando. None of the names jump out to me. but that's okay, I think you seriously need a second opinion. Dr. Eric will tell you...we've seen or read about it over and over in our group.
Ed Moderator: patients go for years with little or no progress...then, they get a second opinion, or consult and the dam break. Suddenly the patient starts getting the right care. The thing is most rheumatologists should be familiar with vasculitis, but some have more experience than others. Isn't that right Dr. Eric?
Leona: So far I had not found one there that is knowledgeable
Peter Merrett Joins Chat
Dr. Eric: The Rheumatology Associates of Central Florida is a group I've heard of.
Dr. Eric: PETER! Welcome!
Ed Moderator: Bee Hop...it's the strongest man in Australia!
Ed Moderator: second aussie of the evening..
Dr. Eric: It's mid-day for them...
Peter: greetings all had to wait for the doctor to leave my room
Ed Moderator: Loved your show the other night Peter..maybe it was last week.
Peter: yes they are, come in right when l was logging in the first time
Ed Moderator: Leo isn't getting better. worse in fact. He needs to be with a doctor who has a good understanding of vasculitis
Peter: this is a pet of mine, look for the right doc
Ed Moderator: heck ya. Gee, Peter, you went through such a bad time for so long
Dr. Eric: Yes, Peter spent a lot of time dealing with doctors who didn't understand.
Ed Moderator: that's what I was saying to Leona. There are good docs out there. But if the one handling the case isn't one of them you need to move on
Leona: Peter, I can relate to that scene
Peter: LEONA SOME TIMES YOU HAVE TO PUSH PAST THEIR EGO'S AND PRIDE TO FIND OUT IF THEY ARE SUITABLE
Ed Moderator: granted, easier said than done. When you are established with one it's sometimes hard to break that bond. what do they say about the devil you know is better than the devil you don't
Peter: yes but we know where the devil lives LOL
Leona: are you in remission?
Ed Moderator: How are you doing these days, Peter?
Peter: at present not that good, lots of little things going wrong
Leona: Boy, rheumys have BIG egos
Peter: not all but some certainly do. l tried at least 5 before l found the right one
Dr. Eric: most doctors do, but it's rarely warranted...
Peter: l went through all of the "it's in your head"
Ed Moderator: Peter is right. Oh yeah, you need two rooms to hold some of their egos. I've met them. However, there are ones like Dr. Kathy McKinnon here in Pittsburgh, Dr. Carette, Dr. Phil Seo...all very humble
Peter: here we have Dr. Buchannan at the Austin hospital
Ed Moderator: and Dr. Judith Savage, right Peter? She was good for you.
Leona: Actually, we have had a few good Drs and I am not afraid to change
Peter: she is amazing, she caught a doctor saying l had hysteria and put him in his place
Leona: I don't think Leo could travel far either
Ed Moderator: Well, my two cents is to find someone who gives a care, Leona. And as I say, if he or she is open to a consult I can help find a rhuemy who will do so
Peter: Leona write down your questions before hand so that you get the answers you are looking for
Ed Moderator: Yes, Absolutely
Leona: I do that, have all the records, and take notes and duplicate always
Ed Moderator: My wife and I just visited a neurologist for her brother who had a stroke. I took a digital tape recorder. He gave me permission and I recorded it all. Then I came home and transcribed the notes
Peter: the question then is "are you happy with the treatment?
Leona: I just have so many questions, I don't know where to start
Ed Moderator: Pretty overwhelming, I know.
Leona: No, I'm not
Peter: as l said write them down at a time that you can carefully think them out
Dr. Eric: Opening question: "What is the diagnosis?"
Dr. Eric: Next; "What leads to the diagnosis?"
Ed Moderator: http://www.vasculitisfoundation.org/vasculitisquestionstoaskyourdoctor
Dr. Eric: The responses to those two questions will usually tell you if the doc is open, or is blowing smoke.
Ed Moderator: Leona, copy that link or write to me and I'll give it to you. Excellent resource. It's a list of questions you should ask your rheumatologist
Peter: l used these questions
Leona: I got that info, but maybe I'd better reread it
Ed Moderator: should I see a specialist, or another rheumatologist
Ed Moderator: They may say no, but if you aren't confident in their knowledge, you owe it to yourself and to Leo to find one who meets your needs
Leona: Good question, since the rheumy controls the meds
Peter: Leona l also see a psychologist on a regular basis too
Ed Moderator: I always tell people....you are hiring them. They work for you. Not the other way around
Peter: exactly
Ed Moderator: Just like we would get canned if we didn't perform to our bosses expectations. It works the other way. It doesn't mean they are a bad doc per se, they just may not be a fit for you.
Ed Moderator: that's what I was saying to Leona. There are good docs out there. But if the one handling the case isn't one of them you need to move on
Peter: l see one of these doctors who dismissed me just to remind him of his mistake
Leona: Boy, I can tell you guys have had the experiences
Peter: sure have!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Leona: Guess I need to be "firmer"
Peter: all is right now with the RIGHT doctor looking after me
Leona: I am so glad to hear that
Ed Moderator: Sure, Leona. And I can tell you are able to be firm without being obnoxious. That's the way to handle it. You are Leo's voice, his advocate
Peter: next step for me l hope is remission
Ed Moderator: I sure hope so Peter
Peter: thanks Ed
Ed Moderator: Also, Leona...post to the group. You will get support there
Leona: I do once in a while. I just feel so ignorant
Peter: don't we are all on a learning journey
Leona: I so admire what you all are doing!
Ed Moderator: No, please don't feel that way. What I know about vasculitis can be put in a thimble with room to spare, but I will post to the group and say..guys, I'm clueless on this topic
Peter: a journey easier when you know the people listening are on the same journey as you and Leo
Dr. Eric: Leona, I first came to the group to learn... don't feel ignorant at all!
Ed Moderator: Dr. Eric here is a great resource. And the Vasculitis Foundation---the best there is
Peter: without a doubt
Karen: hi everyone
Karen: Not doing too great at the moment. I am on Imran now.
Dr. Eric: Karen, what are your major symptoms now?
Karen: fatigue, headaches, lumps all over body, burning pain throughout body, muscle spasms are my main ones
Dr. Eric: Karen, have you ever been in remission?
Ed Moderator: Holy cow, Karen. This is terrible. How long have you been having these symptoms
Ed Moderator: Karen, when were you diagnosed?
Karen: 1998
Karen: my situation is a little complex in terms of symptoms because I have Cerebral Palsy as well. Um I don't think I've ever been in remission
Dr. Eric: Karen, where are you in Australia?
Karen: shoot I need to get going I start Tafe soon. I'm from Great Western in Victoria
Ed Moderator: Karen, would you share some more via the postings
Ed Moderator: I'd like to see how we can help you Karen: it's been great chatting however briefly
Dr. Eric: Who is your rheumatologist? I know several in Victoria.
Karen: Kym Boyden
Leona: Since I've been reading all the posts and learning how PAN treats others
Ed Moderator: Karen, please post an update to the group
Ed Moderator: I'd like to find out more of what's going on
Leona: Karen, I salute you and your struggle
Karen:. I'll post an update later
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