Discussion with Takayasu Patient
DATE: October 25, 2009
Ed: PSN Moderator
Dr. Eric Hoy: Immunologist
Jackie: PAN Group Member
Ed Moderator: Greetings all. This is Ed. Eric, good to have you here. Hello Jackie.
Dr. Eric: Hello, everyone!
Ed Moderator: You're new here aren't you Jackie?
Jackie: I am glad to participate in this. It is a really neat forum.
Dr. Eric: Welcome, Jackie.
Ed Moderator: So cool to have you here, Jackie. Are you a member of the PAN Network?
Ed Moderator: How is it going Eric?
Dr. Eric: Going well... sorry I missed the ACR meeting... sounds like it was good
Jackie: I just joined today. Actually, I have Takayasu's.
Dr. Eric: When were you diagnosed?
Ed Moderator: Ask away. I'm going to try and see if Joyce is having trouble be back shortly.
Jackie: My carotids, aorta, and heart valve are swollen. Perhaps, there is about 70 % or more stenosis. My cardiologist has me on baby aspirin for fear of clotting and stroke. Is this a likely outome--embollic stroke?
Dr. Eric: It is a problem in some patients... I'm checking numbers...
Ed Moderator: Jackie, that link goes to some excellent info at the VF site. Just to give some additional info http://www.vasculitisfoundation.org/takayasusarteritis
Ed Moderator: Also...Jackie, tell us about getting your diagnosis. When did you get it? And you are currently seeing a rheumatologist?
Jackie: I was diagnosed in 2004. I have a rheumatologist and a cardiologist
Dr. Eric: I'm not finding percentages, but embolic stroke is not one of the major problems with the carotids.
Jackie: that is good news. How about hemorraghic stroke? In 2004, I had a blockage about 50 %. Since then there have ups and downs. Last spring (2009) I was feeling almost like a normal person due to an improved lifestyle, but now it looks like I have worse stenosis
Dr. Eric: Have you had any dizziness?
Dr. Eric: or any siezures?
Ed Moderator: tell us about your treatment---meds you've been on or are currently taking?
Jackie: When flare-ups occur, I usually go on medrol for a few months Currently, I had a very bad flare-up leading to palpittions and shortness of breath.Jackie:
Ed Moderator: May I ask your age, Jackie?
Jackie: The steroids are making me feel better, but as I say I now have greater stenosis. I’m still struck by the mismatch between symptoms and degree of swelling.
Dr. Eric: Are you Asian?
Dr. Eric: Do you have decreased pulses in the arms?
Jackie: I have an intuitive feeling of wellbeing, and then a flare-up happens, I actually have fewer symptoms than when I was first diagnosed - weird. What do you think?
Ed Moderator: A new drug that may be helpful for patients with TA who do not get better with the treatments listed above is called An anti-tumor necrosis factor alpha (anti-TNF) agent. More information about the role of this type drug in treating TA is needed,
Dr. Eric: What do you mean by "strengthening" the immune system?
Jackie: Avoiding foods that trigger autoimmune responses taking enough antioxidants, etc. Exercising leading a healthy life...
Dr. Eric: The disease "burns out" in some patients, but most have chronic disease. What are the foods that trigger an autoimmune response?
Jackie: I would like to hear about the instances when the disease burns out. I haven't been told anything about it. I understand that it can vary among individuals, but that some foods such as dairy, wheat and others can exacerbate auto-immune responses.
Dr. Eric: I don't have any personal experience with the patients in whom the disease "burns out", but a friend of mine (Rheumatologist in Japan) has told me about them.
Jackie: Perhaps I could talk (or chat) with your friend!
Dr. Eric: There is no credible scientific evidence that those foods trigger auto immune diseases. I have studied the triggers of disease for many years. I wish it were that simple.
Jackie: By the way I am Korean and am willing to make trips to the East if necessary.
Dr. Eric: Where do you live now, Jackie?
Jackie: I am confident that foods make a difference. This is the wisdom of the East. In Terre Haute, Indiana
Ed Moderator: Jackie, tell us about some of the symptoms that led up to your diagnosis.
Dr. Eric: Could you travel to Cleveland, OH or Rochester, MN?
Jackie: It would take a long time to list everything I would be willing to. I have consulted with one of the Takayasu researchers in DC--Gail Kerr. That was back when I was diagnosed.
Ed Moderator: Dr. Carol Langford is an excellent doc there at Cleveland Clinic
Jackie: Is she a Takayasu's specialist?
Dr. Eric: There are excellent vasculitis centers at both the Cleveland Clinic and the Mayo Clinic. They might be able to give you more information than your local Rheumatologist.
Ed Moderator: I'm not sure if a specialist, but she has written a few articles on it.
Jackie: that is a possibility I would like to look into further although at first glance at the Cleveland website, no takayasu's specialists were listed. Look forward to chatting with her.Jackie:
Ed Moderator: Dr. Carol Langford is doing a clinical study on TAK at Cleveland Clinic .They NEED patients in the study.Ed Moderator:
Jackie: I would love to get in touch with her.
Ed Moderator: The study is part of the Vasculitis Consortium which Dr. Eric and I are associated.
Dr. Eric: Ed, that's the same info I was looking for... Dr. Langford is great!
Ed Moderator: Yes, that rang a bell. At the rehumy convention last week Joyce said Dr. Langford is really anxious to keep this TAK study going. They don't have a large amt of participants. I was actually going to be contacting Dr. Langford to see how I can help in terms of reaching out to support groups. So, yes, Jackie. I will put you in touch with Joyce Kullman after we're done here.
Jackie: That would be great! I would very much appreciate that. That would also be fantastic! What about Dr. McKinnon? I know that she has written on takayasusJackie:
Ed Moderator: Wow, you are doing your homework. I'm impressed. That was my very next suggestion. I know Dr. McKinnon and I’ll be glad to contact her for you.
Jackie: what would be the best way to contact her?
Ed Moderator: I would be more than happy to connect you to her. I didn't know she did work on TAK
Dr. Eric: She wrote an article on large vessel vasculitis a couple of years ago... I think I have it in my files, if you would like a copy.
Ed Moderator: I will make the intro. She's a really, really open and nice person
Jackie: I would very much appreciate that. I was planning on reading her research and see if I could email or call her.
Ed Moderator: We've been friends for a couple of years. I'll be glad to connect you to her. I will write to her first to give a head's up and then give you the go ahead
Dr. Eric: Jackie, do you have any of Dr. Kerr's articles? I can send some of them, too.
Jackie: If you would send a PDF of her paper that would be great. Also, if you would introduce us, that would be perfect.
Ed Moderator: Email or call her. You could actually see her in Pgh. Not that far away.
Ed Moderator: Eric, if you have some of those notes I'd love to get them too. Are they electronic?
Jackie: I have some of Dr. Kerr's papers from back when I was diagnosed in 2004. I haven't seen any recent work yet, but only because I haven't been up to doing the research.
Ed Moderator: A quick comment on this new treatment with TAK..
Jackie: So, if it is easy enough for you to e-mail me Kerr's recent work that would be awesome, too.
Ed Moderator: Anti-tumor necrosis factor alpha (anti-TNF) agent
Jackie: What do you think of this new treatment? How does it work on the immune system?
Ed Moderator: This is the first I've heard of treatment, can you shed light on it Dr. Eric?
Jackie: Sounds like it is a strong immune suppressant?
Ed Moderator: I guess not proven yet...but shows promise
Jackie: Where can I read about it?
Ed Moderator: Just got a little blurb on it from the VF site...they have a section on TAK
Dr. Eric: The anti-TNF drugs are some of the new agents. They are strong suppressors of inflammation, and they are expensive.
Jackie: Can swelling ever be reduced?
Ed Moderator: http://www.vasculitisfoundation.org/takayasusarteritis
Jackie: Not only suppressed?
Ed Moderator: Do they have stronger side effects than the current suppressors?
Dr. Eric: Remicade, Humira, and Enbrel are examples.
Jackie: Back to your Japanese friend, would you think he would be willing to e-mail with me?
Dr. Eric: Opportunistic fungal infections are a particular problem, If you've had TB in the past, it can re-activate. I'll check with him. I know he has an interest in Takayasu's.
Jackie: I don't plan to rely upon immune suppressants except to squelch a flare-up. that would be great!
Dr. Eric: They may reduce the swelling by reducing the inflammation.
Jackie: OK. So in theory the stenosis of 70 plus % can go downJackie:
Dr. Eric: Theoretically, yes, but there are no guarantees.
Jackie: This is why I would like to learn more about the "burn out" of takayasus
Dr. Eric: I'll see what I can find for you, and I'll contact my friend.
Jackie: Perhaps there are some figures about how many show decreases in swelling.
Jackie: Yes, that would be wonderful. Thank you so much.
Ed Moderator: Jackie, Dr. Kathy McKinnon is supposed to be our chat guest next week!
Ed Moderator: By the way, how did you find out about the PAN Network?
Jackie: My husband found out about it as he was looking for information on TAK
Ed Moderator: Excellent. Well you are now in our network forum. Do me a favor and introduce yourself and
Jackie: Really? I look forward to the chat session next week, then. Is it the same time and also every week?
Ed Moderator: Ask if anyone knows of doctors who specialize in TAK. And if there are patients in the group with TAK. I know there must be a few. Well, thanks Dr. Eric as usual. This was a good chat. I feel like we helped Jackie make a connection and that's what we do best.Ed Moderator:
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