PAN / Vasculitis Chat
TOPICS: RAVE Study Results, Takasau Vacuities, Pittsburgh Vasculitis Center
DATE: October 25, 2009
Ed: PSN Moderator
Dr. Kathy McKinnon: Rheumatologist
Dr. Eric Hoy: Immunologist
Jackie: PAN Group Member
Cindy: PAN Group Member
Peter: PAN Group Member
Mary: PAN Group Member
Dr. Eric: Hello, Jackie... hello, Ed!
Jackie: Thanks for getting in touch with the TAK specialists as you promised. I look forward to conversing with them soon and with Dr. McKinnon today.
Dr. Eric: Jackie, I haven't had a chance to make connections with my friend in Japan, but I'm working on it.
Ed Moderator: How are you feeling Jackie?
Jackie: Well, thanks for asking. This week after catching and recovering from the flu, I learned I have bronchitis, likely due to Takayasu inflammation.
Ed Moderator: I see. So the Takayasu makes it worse because of the inflammation.
Dr. Kathy McKinnon: Hello!
Ed Moderator: Hi Dr. Kathy. Thank you so much for coming tonight. You have a sort of full house.
Dr. Kathy McKinnon: No problem, glad to be here.
Ed Moderator: Okay, we'll get started. Here's how it will work folks... I'll have a Quest and Answers with Dr. Kathy for a bit and then open up to everyone.You were at the ACR conference. What were some of the interesting that were discussed there?Ed ModeratorEd Moderator
Dr. Kathy McKinnon: I think one of the most exciting things we heard about was the RAVE study, or rituximab for the treatment of ANCA vasculitis (wegener's, Churg strauss, MPA. In this study patients did as well with this new treatment as patients treated with cytoxan and as you may know, cytoxan has many side effects. So this may be a good option, and maybe even a better one for patients ultimately.
Ed Moderator: So the good news story here is ... There is some promise for Rituximab. Will it ever replace Cytoxan.
Dr. Kathy McKinnon: I think time will tell. Promising enough though that I'm treating one patient with it, and will be starting another one on treatment with it soon.
Ed Moderator: question. tell me more about abatacept. I'm not familiar with it. Newer drug?
Dr. Kathy McKinnon: Has been studied in rheumatoid arthritis, works on B cells-in a different way than rituximab. too soon to know how good it will be.
Ed Moderator: Has it been used for other diseases too? Since we have a TAK patient here tell me about this disease. Do you see it in your practice? Do you treat it differently than say, PAN or MPA?Ed Moderator
Dr. Kathy McKinnon: I do see TAK patients. It is treated differently than PAN or MPA. Unlike those diseases, many of the immunosuppressive agents used to take the place of steroids don't work very well. But the good news is that some of the newer medications used for arthritis. The anti-tumor necrosis factor agents (Remicade, Humira,, Enbrel) do seem to work. My patients doing quite well on these treatments now.
Ed Moderator: I see. By the way, did you attend Dr. Stones talk on biopsies at the ACR?
Dr. Kathy McKinnon: I didn't get to that one. What did you think?
Ed Moderator: Unfortunately I didn't get to go. I got info second hand. It sounded interesting. The gist of it being that frequently biopsies aren't going deep enough and thus affecting DX. I mean it was more than that but that was the part I thought was interesting. Are you familiar with what he is talking about?
Dr. Kathy McKinnon: Yes, this is an area of controversy. Sounds like it's still an ongoing discussion since there are studies that support both sides it's hard to come to a consensus when all of the information doesn't agree. Last article he wrote about this referenced more temporal artery biopsies for temporal arteritis whether you could just get a small piece or needed more tissue, or more sections of the artery.# Hi Dr. Kathy McKinnonPeter!
Ed Moderator: Okay ..moving to something else. Can you share any news about a Pittsburgh Vasculitis Center? And what role you will play in it?
Dr. Kathy McKinnon: We are working on formalizing this at the University... We are now a VCRC center, the university requires some paperwork, permissions, etc. should be soon I hope. We have support group meeting this month as you know. and will be opening 8 research studies in the next few months.Dr. Kathy McKinnon
Ed Moderator: YES, thanks. I think that's terrific that Pittsburgh will be a study center. That has to be really exciting for you
Dr. Kathy McKinnon: I am happy that this will provide a lot more for the patients that I take care of. These diseases can be tough and its good to have more resources for us.
Ed Moderator: So let's open up to discussion. I'm sure Jackie has some questions. Just fire away Jackie. Please give a little intro first, Jackie.
Jackie: Hi. I am a 42 yr old Asian American, who was diagnosed with TAK 2004. Several years before that I had many symptoms and since the diagnosis, have been overcoming the complications/effects one by one. I have recently learned that I have an extremely high mercury level and wonder whether the auto-immune effects are in part a reaction to this. That is my first question.Jackie
Dr. Kathy McKinnon: That is a good question, and one we don't know the answer to yet...
Jackie: My second concerns the risk TAK presents of stroke. My doctor thinks it heightens my risk of embollic but not hemorraghc. Is this true?
Dr. Kathy McKinnon: Stroke risk in TAK can come from several different things, from narrowing of the blood vessels, from factors in the blood that make it more likely to clot. but one of the biggest factors is high blood pressure, which can cause different types of strokes, including hemorrhagic. Dr. Kathy McKinnon
Jackie: I don't have high blood pressure (except due to being on Medrol). But, I am currently on aspirin. One of the problems in TAK is that in people who have narrowing of the blood vessels in both arms and their arm blood pressure is not accurate and often leads to high blood pressure being missed. I agree with aspirin-I do have my patients on this too.Dr. Kathy McKinnonJackieMy narrowing is primarily in the carotid (estimated at 70-80 % stenosis) and aorta. In addition, my valves are swollen allowing for backflow and probably having led to palpitations, etc. I haven't checked the arm vessels
Dr. Kathy McKinnon: I see. Those are common problems in TAK.
Jackie: I have heard that TAK can sometimes simply burn out. Have you seen such cases?
Dr. Kathy McKinnon: I have. it occurs in about 1 out of 5 patients-who have one episode and never have another one.
Ed Moderator: Wow, I had never heard that before Dr. Kathy. Is it true of other types of vasculitis? Hi Cindy, welcome.Ed Moderator
Cindy: Hi everyone
Dr. Eric: Hello, Cindy!
Dr. Kathy McKinnon: It can happen in other types, but really more typical for these diseases to be chronic. Hi Cindy!
Ed Moderator: Okay Eric you have the floor.
Dr. Eric: Keeping with the TAK burnout, is it likely if there is 70-80% stenosis in the carotids?
Dr. Kathy McKinnon: I think of burnout as the absence of any inflammation. But even when the inflammation is gone, arteries continue to age. So that areas that are already narrow can become more narrow with atherosclerosis.
Jackie: I wonder whether you have found the heart related problems to e connected with pulmonary problems--I appear to have had inflamed bronchia for several years--although I just found out X-ray results last Friday. Can the inflammation eventually be totally controlled. OK. So the narrowed arteries do not bounce back.
Dr. Kathy McKinnon: We believe that the inflammation can be controlled, but the response of the artery to injury. can continue. That's one of the reasons that I have my patients on "statins" not only do they lower cholesterol but are supposed to help keep the arteries healthier and decrease further narrowing.
Dr. Eric: my second question is about Rituximab. Isn't this extremely expensive. In the "red pill vs. blue pill mentality of the government will this drug get reimburse?
Dr. Kathy McKinnon: yes this drug is very expensive... but it's only given twice a year on average in comparison to treatments that need to be given daily...and it does not require prophylaxis against PCP, or frequent lab monitoring (which is also expensive!).
Jackie: Is that drug helpful for TAK, too?
Dr. Kathy McKinnon: has not been studied in TAK yet. Yes Jackie-inflammation in lungs can be related to problems with heart and heart valves.
Jackie: Thank you.
Ed Moderator: Question Dr Kathy.. Big topic this week: Should PAN patients get the flu shot or not. Please share again some of your thoughts on this matter.Ed ModeratorEd Moderator
Dr. Kathy McKinnon: the Center for Disease Control currently recommends people receiving immunosuppressive therapy should be vaccinated against H1N1 in addition to usual yearly flu shot but should not get live form, but inactive form instead live form is inhaled treatment, inactive is an injection but at least in our area vaccine is in short supply.
Ed Moderator: It sure is...I found that out.Thank you for clearing that up. Any questions from anyone else? Peter how are you doing! Tell us what's happening with you these daysEd Moderator
Ed ModeratorPeter: Very slowly at present with a very strong flare
Ed Moderator: Peter is one of our original members from Australia.
Dr. Kathy McKinnon: Sorry to hear about flare Peter.
Ed Moderator: Peter , how is your vision?
Peter: Thank-you Kathy but for me of late it is the norm. Ed l have 5% in the left and 65% in the right Pred is holding it thankfullyPeter
Ed Moderator: What dose of Pred are you on, Peter?
Ed Moderator: Dr. Kathy...I know it's impossible to give an average, but what is close to an average does of Pred for a PAN Patient or is there even such a thing?
Dr. Kathy McKinnon: For a flare anywhere from 40-1000mg/day and when disease is quiet could be on no prednisone at all.
Ed Moderator: And how long could someone be on 1000mg a day. Is there a point where you have to lower it or face side effect risk?
Dr. Kathy McKinnon: Oh that’s usually only for a few days if vasculitis very active... Then we decrease down to more "normal" ranges.Dr. Kathy McKinnon
Ed Moderator: I see. Any other questions for Dr. Kathy while we have her here?
Jackie: Is Statin good drug to go to for TAK after the inflammation subsides a bit. Or when? I am currently taking Medrol.
Dr. Kathy McKinnon: I start my patients with TAK on statins right away. They also have anti-inflammatory effects. Please all if I can be of any further help feel free to email me firstname.lastname@example.org. and no it can't take the place of medrol, but I think can help. Wish we did have something to take the place of medrolDr. Kathy McKinnonDr. Kathy McKinnon
Peter: Ever thought of changing countries????
Dr. Kathy McKinnon: My husband is from Panama, so if I change suspect that would be where I'd go first...:)
Ed Moderator: Maybe you come here, Peter! We can show you a good time in Pittsburgh!
Peter: Love to.
Jackie: Thanks you so much, Dr. McKinnon for taking the time to come and for listening to my questions and answering!
Ed Moderator: Okay that's all I have for tonight. Okay, great. Thanks all for coming. Anything else to add guys? Do you think we got the group back on track this week Eric, a question about RAVE results. Initially I thought the conclusions were rather muted. I mean there didn't seem to be the excitement that this is something big or did I read it wrong?Ed ModeratorEd Moderator
Dr. Eric: Potentially big, but I think the expense is still going to be a stumbling block... it's about $1,500 per dose.
Cindy: Ed, Cytoxan kills fertility and that is huge. Do they think Rituxan will help PAN patients?
Ed Moderator: Eric what about Rituxan and PAN? Good point on the fertility issue, Cindy !
Dr. Eric: The effects on fertility are still under study... Peter Merkel asked me to be on a committee to look at fertility issues. I don't know that it has been tried in any PAN patients. It should be similar to MPA and WG. Dr. Eric
Cindy: Cytoxan also has known cancer implications. They say Rituxan does not.
Dr. Eric: I'm going to be doing a lunch Q&A on PAN and cryoglobulinemia at the symposium.
Ed Moderator: We will distribute books, DVDs and other materials to PAN Members just like a library. Eric do you have any old textbooks or materials you could donate? I'm trying to work with some publications that actually set aside some of their stuff for non profits.Ed Moderator
Dr. Eric: I'm sure I do... I'll have to dig thru the archives (my bedroom).
Mary: We are still working out the details of how to best do things
Cindy: We can talk soon. Thanks everyone! Good night
Ed Moderator: Please do and let me know. I'll tell you where to ship them. SEE YOU See ya'll have a good night. Dr. Eric: Good night everyone!Ed Moderator
Ed Moderator: Ed and Mary and Cindy and Elvis have left the building
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