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Participants:
Ed: PRSN Moderator
Dr. Kathy McKinnon: Guest lecturer; rheumatologist
from UPMC
Mary: RN & PAN volunteer
Gladys: PAN patient
Debby: PAN patient
Jessica Rabbit: PAN patient, Co-moderator.
Key topics discussed: Vasculitis & research, new medications, Q&A w/Dr. McKinnon.
Ed Moderator: Hello Dr. Kathy. Welcome! Thanks for joining us tonight. We'll start in a few minutes.
We'll start off with introductions, just jump in. I'm Ed your Moderator in Pittsburgh
Kathy McKinnon: Kathy McKinnon, Pittsburgh, rheumatologist with a particular interest in vasculitis.#
Mary: Mary, RN and PAN volunteer.
Ed Moderator: Debby, tell us briefly about yourself.#
Debby: Well, I am 4 years in remission. I had an acute episode back then, spent a long time at Rush Chicago Hospital than on Prednisone and Cyclo.
Ed Moderator: You did have a diagnosis of PAN, correct?#
Debby: Yes, after 6 weeks of testing. I was teacher at the time I became ill. Now I' m permanently on a teacher' s disability pension. I am 61 years old. I' m married now too.
Ed Moderator: Debby, that' s wonderful news. That' s got to be helping you to be positive and keeping yourself healthy.
Gladys, tell us a bit about yourself.#
Gladys: I have PAN, I' m taking Cytoxan. I am also a diabetic with kidney failure with 20% function. But I am a happy grandma at 64 years old. I was working until last year when I had an acute episode.
Ed Moderator: Dr. Kathy and I will chat for a few minutes and then open to questions. Remember, if you have a question raise your hand by typing a !. I'll call on you and most importantly, remember to put a # when you finish your thought. Just like this#
Ed Moderator: Dr. Kathy, great to have you with us!#
Kathy McKinnon: Glad to be back.#
Ed Moderator: Can you tell us some of the new things you' re doing in terms of research or any specific developments?#
Kathy McKinnon: Three weeks ago I was in India. I was invited to speak at a Vasculitis meeting and
visit hospitals. They have a much larger PAN population there because of the prevalence of hepatitis B. We are planning to do some work together to study PAN and other forms of vasculitis that are more common there. I will also learn about their course and best means of treatment.
It looks like I will be returning to spend more time there next year to do this which is very exciting since the rarer diseases are very difficult to study here.#
Ed Moderator: I' d file that under exciting. So what is the state of their research in India as far as Vasculitis and what are some of the primary centers where PAN patients can be seen? We have about four in the group from India.#
Kathy McKinnon: They are eager to have help; they have so few rheumatologists that several patients that I saw while I was there had come 2000 miles by train. They have many patients, much information, but not the time to organize or publish their data.#
Ed Moderator: Wow, that' s something! I guess if someone was going to find a rheumatologist, they would go to New Delhi or one of the large cities?#
Debby: How sad for those people to live in such an impoverished country and to have Hepatitis B and PAN.#
Kathy McKinnon: It' s a tough situation, but amazing the dedication of the physicians and how brave the patients are despite that.#
Ed Moderator: So we have a lot to share with them.#
Kathy McKinnon: There are excellent rheumatologists in Chennai and Vellore.#
Ed Moderator: Do many of them come over here to study and then go back?#
Kathy McKinnon: Not too many go back, there' s difficult conditions and so much poverty. The physicians are also not well paid in public practice.#
Ed Moderator: Tell us a bit more about the links between Hepatitis B and PAN and Vasculitis in general. Is it connected more with PAN than other vascular diseases?#
Kathy McKinnon: I' m not sure of the exact mechanism. It does seem to be more closely linked to PAN. The thought is that the immune reaction to a virus or viral proteins leads to an abnormal immune response.#
Ed Moderator: Why is Hepatitis B a much larger problem in India? Or do I understand that correctly?#
Kathy McKinnon: That is perpetuated against medium sized blood vessels. The testing for infectious diseases like Hepatitis and HIV are not widespread, so infected people often don' t know. So the disease is spread and often untreated.
Fortunately, there is aid for some patients and as you all probably know, steroids are quite inexpensive.#
Ed Moderator: Kathy, are there any developments here in the states that are of interest, new treatments or diagnostic developments?#
Kathy McKinnon: Nothing cooking for PAN just yet. There is a RAVE study for small vessel vasculitis (Rituximab).#
Ed Moderator: Hello Jessica Rabbit.#
Jessica Rabbit: Hello everyone.
Ed Moderator: Go ahead Mary.#
Mary: Kathy, with all the auto immune disorders, is there such a thing as cross-over diseases?#
Kathy McKinnon: One thing that is important to keep in mind is that we have arbitrarily created disease categories that many patients don' t fit into and often these features overlap. I would estimate that anywhere from 10-20% of patients in our center have an overlap or disease that doesn' t fit neatly into any one category, but the treatment is usually based on disease manifestations. If there is a kidney involvement, we use medications that have been used to treat kidney inflammation/immune mediated damage and so on for most organ system involvement.#
Mary: I guess my question is, if you have these symptoms, do you need a confirmation of a diagnosis to determine treatment or can it be system based?#
Kathy McKinnon: If your disease has not been formally categorized, or doesn' t have a name yet , which many of our patients is true, we treat signs and symptoms based on other diseases with similar features.#
Mary: That' s what I thought, but sometimes it' s frustrating for patients when they have a multitude of symptoms, but no direction in which to go.#
Kathy McKinnon: Absolutely, very frustrating.#
Ed Moderator: Question on that trek of thought. Is it more important to find out what type of autoimmune disease a person has or is it more critical to know what specific type of vasculitis a person has? Does that make sense?#
Kathy McKinnon: My first immediate concern is to find out what organs are affected or at risk since time can make a huge difference for most patients with organ involvement and/or active inflammation, the time course is usually shorter because there is something to biopsy then.#
Ed Moderator: I' m thinking with autoimmune it could be Lupus, MS or a wide range of diseases. Is it important to know which one of those diseases it is, Lupus or MS?#
Kathy McKinnon: I met a young woman recently sent to me with suspected vasculitis and even though we didn' t have a tissue diagnosis at her visit, it was clear to me that it was likely vasculitic and we initiated treatment at that visit immediately.#
Ed Moderator: Is it true if someone has one autoimmune disease similar to another, are most autoimmune diseases treated the same too?#
Kathy McKinnon: No, that isn' t always the case because MS, Diabetes, thyroid disease are also autoimmune and not necessarily treated the same.#
Ed Moderator: Thank you, very helpful. Let me turn the mic over to Jessica Rabbit here. She is one of the original members and is a co-moderator. Jessica, tell us how you' re doing.#
Jessica Rabbit: Hello everyone. I' m pleased to make the chat tonight.
Ed Moderator: Jessica, were you from Ecuador? I couldn' t recall for sure.#
Jessica Rabbit: So far, so good. I' ve been in remission for approximately 4 years. The doctors are worried but watching for possible incoming relapse. I' m taking it easy. #
Kathy McKinnon: Glad to hear you' re well.#
Jessica Rabbit: My entire family is from Ecuador. I was the first one born here, but conceived over there. At least I wasn' t born on the plane ride over!#
Ed Moderator: Jessica, how old were you when you were first diagnosed? NOTE: Gladys is also from there.#
Jessica Rabbit: I' m 32 years old. I was diagnosed in 2001.#
Ed Moderator: Questions for Dr. Kathy?#
Debby: Dr. Kathy, what is the average age of PAN onset for people in India?#
Gladys: !
Kathy McKinnon: The patients are younger in India, 30' s 40' s.#
Gladys: Dr. McKinnon, what will be your favorite treatment (medicines I mean) for a diabetic, PAN, joint pain and kidney patient?#
Kathy McKinnon: That really depends on what we need to treat. If the pain is from inflammation/active disease, then low to medium dose steroids to start with for immediate control. Steroid sparing agents that can be used in kidney patients include Azathioprine and Cellcept. But joint pain can come from other things too like avascular necrosis from steroids or even degenerative arthritis. Unfortunately, vasculitis patients get this too.#
Gladys: Thanks!#
Ed Moderator: Dr. Kathy, why is a younger population getting PAN in India?#
Kathy McKinnon: That seems to be related to Hepatitis too.#
Ed Moderator: Anyone else in our remaining minutes?#
Jessica Rabbit: Did anyone read the story I posted on the article on Fosamax? Any thoughts on the veracity of it?#
Ed Moderator: Please summarize Jessica. I only saw a bit of it.#
Kathy McKinnon: I didn' t see it. What' s the scoop?#
Jessica Rabbit: Studies were showing Fosamax now may be the culprit of strange fractures to the femur, etc. for long-term users.
Kathy McKinnon: There has been some discussion about what long term results could be since we know that increasing bone density doesn' t necessarily mean creating normal bone architecture. So I think we are all keeping a close eye on our long term users.#
Jessica Rabbit: I had been on Fosamax for awhile but not as long as 7, 10 or 15 years as studies show. I am now on Boniva.#
Ed Moderator: Kathy, your thoughts on this topic. This is something heavily discussed in our group lately. Some patients will really want to know and dwell on what caused their illness. Was it something they did? Was it environmental or chemical or genetic? Two parts to this question; 1) how important is it for patients to come to terms with the possibility of the origin of their disease or that they may never know. 2) how do you answer someone who asks what causes PAN. It' s really many factors, correct?#
Jessica Rabbit: It is too diverse an area to dissect without a major study over long periods because there is no showing why this one in this situation in this environment and the others.#
Ed Moderator: Right Jessica.#
Kathy McKinnon: I tell patients that it is likely multifactoral, like many other diseases. We know that genetics may play a part in addition to environment but this is also true of diabetes, heart disease, etc. where we can' t always pinpoint a cause. But I emphasize that this does not mean the disease cannot be treated.#
Ed Moderator: What do you tell your patient if he or she is unhealthily focused on why it happened, searching for the trigger . Especially if they are blaming themselves?#
Jessica Rabbit: Whenever this subject comes up, I always then think to those of us who have autoimmune diseases, are so much more likely to have multiple autoimmune diseases.#
Kathy McKinnon: For most people, they are relieved to know there is treatment and can get better. For those searching for a trigger, especially if it is unhealthy, stress definitely affects the immune system, can be a trigger.#
Ed Moderator: Finally, the role of stress as a possible trigger and a culprit in a relapse too?#
Kathy McKinnon: Yes, I have seen this more with rheumatoid arthritis and Lupus, but I don' t doubt this could contribute to a flare of vasculitis.#
Ed Moderator: Jessica, what is happening and how are you feeling that makes you concerned about a relapse?#
Jessica Rabbit: My flares or the fear of the flares are due to my stressors in life that are always on my mind because for example, I' m separated from my husband, lost my job, lost my health insurance. My grandmother is in the hospital with a bad stroke, etc, leave me cautious as to how my body will react.#
Debby: I was born hearing impaired and with a rare muscular dystrophy (GSD type V), so then depression of course with that, so then my teaching became overwhelming.#
Kathy McKinnon: I am lucky to have a wonderful therapist at our hospital. I encourage my patients in very stressful situations to see her. If only to have someone outside the family to decompress with and also to get advice on healthy ways to manage stress to minimize flare risks.#
Ed Moderator: Sure, absolutely.#
Debby: I have been in therapy and take plenty of great meds for stress and depression.#
Kathy McKinnon: I wish all my patients were so open minded to get help when they need it.#
Ed Moderator: I think that is why support groups like ours are so critical, they offer a sounding board. I think to find someone with the exact same disease you have is a huge impact on the psych health.#
Debby: Absolutely.#
Kathy McKinnon: I agree, I think this a great forum.#
Ed Moderator: Often members will say they are afraid to post because they' re not doing well. They don' t want to drag the others down. I always say this is EXACTLY when you need to post and share.#
Kathy McKinnon: Absolutely, it' s good when we can share encouragement.#
Ed Moderator: Well, that about wraps it up folks. Thank you x100 for taking time for us Dr. Kathy. Your input is invaluable.#
Jessica Rabbit: Many thanks Dr. Kathy.#
Kathy McKinnon: Any time, I' m always glad to be here.#
Debby: Thanks so much Dr. Kathy.#
Mary: Thanks Kathy!#
