PAN / Vasculitis Chat
DATE: March 14, 2010
Ed: PRSN Moderator
Dr. Kathy McKinnon: Rheumatologist with UPMC
Dr. Eric Hoy: Immunologist
Gail: PAN Group Member
Ed Moderator: Welcome to the PAN Chat
Dr. Eric: Hello, Ed. Hello, Kathy! Hope everyone is doing well tonight
Ed Moderator: Hello!
Dr. Kathy: Hi Eric, how are you? I'm working on getting studies open at our center.
Dr. Eric: Same at our place... hard to believe there are millions who don't have health care Which studies?
Dr. Kathy: We're a VCRC site now, so we're opening the longitudinal studies, abatacept for large vessel vasculitis and the plasma exchange study for severe ANCA vasculitis. It is very exciting to be able to bring this to Pittsburgh.
Dr. Eric: Great!
Ed Moderator: Well that leads right into our first question, Dr. Kathy. Tell us about Pittsburgh getting a vasculitis center. What does this mean to a patient in the area who has vasculitis?
Dr. Kathy: This means that they will be able to participate in the research studies that are ongoing as part of the Vasculitis Clinical Research Consortium.
Dr. Kathy: Access to new treatments, and for those who want to contribute to other research, they can enroll in the registry, where we collect information about these diseases, response to treatment, relapses, remissions, etc. Also I hope this means our support group will grow as well.
Ed Moderator: Talk a bit about the process if you would...so a patient comes to the center wanting to participate in a study. What happens then? Initial screening? Baseline tests?
Dr. Kathy: We will tell them about the available studies. If they want to participate, we'll enroll them in our research registry and then screen them for treatment studies. Fortunately not everyone will need new treatment. I have many patients doing well on current therapies now.
Ed Moderator: So if a new patient comes in..say referred to by another doctor, he or she can be treated there. I mean, not necessary have to do a clinical study but just go to Pgh Vasc Center for care.
Dr. Kathy: Yes, I have patients referred from other rheumatologists or specialists for treatment or sometimes people just want a second opinion to make sure that they are on the right track. So we can help people in a variety of ways.
Dr. Eric: Kathy, are there other vasculitis specialists there?
Ed Moderator: So the center will not only benefit patient community but also are doctors who may suddenly be confronted with a case of PAN and now there is a local resource for referral.
Dr. Kathy: Yes, we have another doctor here, Dr. Liang, who was trained at the Mayo clinic and specializes on vasculitis. We have other specialists (kidney doctors, lung doctors, neurologists, etc) who are expert in taking care of patients with vasculitis. So yes, we are fortunate to have resources for patients with new or prior diagnoses of vasculitis.
Ed Moderator: That's wonderful, Kathy. I mean it puts a patient into the specialists circle.
Dr. Eric: Great. We have some really good rheumatologists at UT, and they are learning more about vasculitis as I nag them about it.
Ed Moderator: I'm sure other doctors are thankful to have a place to refer any patients they get with vasculits. Are there any restrictions on accepting patients based on geography? I mean is it open to the tri state area?
Dr. Kathy: I have no restrictions. I'm seeing some out of state patients now. Only thing that seems to be a factor is insurance-some companies require preauthorization for visits at outside institutions.
Dr. Eric: Yes, I'm presenting a Grand Rounds on a vasculitis patient next month. I'm hoping that will fire up some interest.
Dr. Kathy: I think that's a great way to generate interest and find that a good case will spark my interest in things that I might not otherwise think too much about.
Ed Moderator: Can you share some of the specific studies that will be done...(I think I lost your previous comments on them)
Dr. Kathy: we are getting information about different forms of vasculitis. So patients with wegener's, churg strauss, giant cell arteritis, Takayasu's arteritis can enter study no matter what disease is doing-active or inactive. We follow their disease over time and compare with other patients with the same disease. We are also opening treatment study for patients with large vessel vasculitis (Takayasu and giant cell) with treatment with abatacept, a new medication that has been studied in rheumatoid arthritis. Later this year we'll be opening a study using plasma exchange in combination with usual treatment for patients with severe ANCA vasculitis (kidney or lung involvement). I'm also submitting a grant to the NIH to look at the immune system in patients with vasculitis.
Ed Moderator: Can you elaborate a bit more on what a plasma exchange means?
Dr. Kathy: Plasma exchange means removing some of the patient's blood products, sort of like hemodialysis, and putting in "clean" plasma which has shown to help patients in small studies, but has never been looked at in a large randomized, placebo controlled study.
Ed Moderator: What does this do? Or, I should say what is the desired goal of doing it?
Dr. Eric: What is the advantage of exchange over plasmapheresis?
Dr. Kathy: Well, the thought is that this removes some of the harmful proteins circulating in the blood, it is the same thing as plasmapheresis technically.
Ed Moderator: So this process could potentially lead to...remission?
Dr. Eric: We do a lot of plasmapheresis, but we don't do the replacement.
Dr. Kathy: No one is exactly sure how it works, but in smaller studies with patients with kidney involvement, patients who received the exchanges were less likely to progress to need dialysis-more likely to recover their kidney function the replacement is necessary if you do more than one exchange just because you remove plasma proteins (albumin, clotting factors) that we don't want our patients to go without.
Dr. Eric: Kathy, you said your new grant will look at the immune system. As an immunologist, this interests me. What specifically will you look at?
Dr. Kathy: We are planning to look at B and T cell profiles, and to me the most exciting part is looking at T cell stimulation assays and T cell multi-functionality. I think this may be a way to monitor immunosuppressive therapy to try to avoid over- or under immunosuppression and minimize infection and cancer risk.
Ed Moderator: Okay..I'm not letting you off easy! ;-) T Cell Stimulation? If you guys sound excited we should be excited..:-)
Dr. Eric: Ed, exciting now for us, and I hope some useful applications a few years down the road.
Ed Moderator: What would it potentially mean for a patient? Better immuno treatment..less evasive?
Dr. Kathy: T cell stimulation is a way of measuring T cell activity. Counting T cells is ok, but doesn't mean a lot if they don't work. Stimulating them with common proteins gives us an idea of how active they are. And yes Ed, that is the goal. Better tailored, less toxic therapy.
Dr. Eric: I'm doing some work with CD17 T Cells in lupus patients right now... fascinating work!
Dr. Kathy: That is very interesting work. Anything you can share yet?
Dr. Eric: Kathy, nothing definite yet... sorry.
Ed Moderator: Perfect. Thanks. It's just I get emails after posting these chats and people are like...What do they mean. Can you get them to translate. So I'm the DD - designated dummy sometimes
Dr. Kathy: Ed we're all the dummies when it comes to the immune system in vasculitis. That's why we're working on all of this research!
Dr. Eric: Amen, Kathy!
Ed Moderator: Okay, to change the subject slightly to neuropathy Got some questions from patients and hit close to home as my sister in law is undergoing radiation treatments and she is suffering from neuropathy in the feet. How often does neuropathy happen in vasc patients?
Dr. Kathy: Depends on the type of vasculitis. It's not so frequent in large vessel vasculitis (Takayasu and giant cell arteritis)
Ed Moderator: It's more frequent in some types than others? What about PAN?
Dr. Kathy: But more common-I would have to guess at least 20% in other types, much higher in PAN.
Dr. Eric: In small vessel vasc and cutaneous forms I'd say it's very common... over 50%
Ed Moderator: Can it also occur due to the meds or treatments? Can Immuran or Metho cause it?
Dr. Kathy: I've seen it more with Cellcept than MTX and Imuran but it is common for patients getting high doses of steroids to develop diabetes, which is often associated with neuropathy.
Ed Moderator: Hey blackbird..this has to be Gail!
Gail: you got it
Ed Moderator: ha. Welcome to the chat. We're talking about neuropathy with Dr. Kathy and Eric What therapies for neuro? My sister-in-law is taking hydrocordone? 500 mg
Gail: I have neuropathy =bad in feet and up the legs, beginning in my hands
Dr. Kathy: Neurontin, Lyrica, Cymbalta, Lidoderm most common treatments.
Ed Moderator: What options are out there to combat the pain?
Dr. Eric: I've seen the most success with neurontin and lyrica.
Dr. Kathy: They are medications directed at nerve pain. Tend to work much better than pain medications. I agree with Dr. Eric.
Gail: Those are pain meds -- sometimes work
Ed Moderator: Ahhh, so neurontin might be more effective than hydrocor...targeting the nerves
Gail: What are some other meds you speak of?
Dr. Kathy: yes tends to be more helpful. Lidoderm are topical patches....
Ed Moderator: What about heat or cold?
Dr. Kathy: Heat and cold can aggravate neuropathy in some people just because nerve fibers don't work right.
Ed Moderator: So no to heating pad or compress..or try it out and see if it helps. Maybe not for everyone.
Gail: ice has helped with the worst of my pain
Ed Moderator: What about a TENS unit therapy?
Dr. Eric: Sometimes it helps, but sometimes it is exquisite pain.
Dr. Kathy: I've had patients with back problems that this seems to help the most.
Ed Moderator: You mean the TENS unit?
Dr. Eric: TENS units either work well or not at all... and I don't know why.
Ed Moderator: So Gail, do you have chronic pain or come and go?
Dr. Kathy: I agree, have seen the same.
Gail: chronic pain
Ed Moderator: Now, there can be regeneration of the nerves, correct? I mean the damage is possibly reversible?
Gail: That would be a miracle
Dr. Kathy: Nerves can suffer injury or damage. Depends on what happens to them. Can sometimes recover from injury or suffer permanent damage.
Dr. Eric: not necessarily a miracle, but a slow process.
Ed Moderator: Okay, a few quick questions. a member asks...is the reduction of prednisone to see if symptoms disappear or get worse a reasonable treatment plan? They are concerned about this course as their doc has suggested it.
Dr. Eric: I'll defer to the rheumatologist... I think it depends on the individual case.
Dr. Kathy: I don't think there's an appropriate general answer for this. Steroids do cause side effects, so can create new problems but in general we try to get steroid doses down or off because of long term side effects once patients are in remission.
Ed Moderator: This doesn't seem like an uncommon approach? I guess the key is to be CLOSELY monitored!
Gail: I'm off all steroids and have been for a few years Neuropathy continued to get more painful and more nerves lost
Ed Moderator: That's wonderful, Gail. Now Gail, did you find a difference in pain from when you were on steroids or off them?
Gail: Not at all---maybe worse now
Ed Moderator: another question...I'll paraphrase as best as I can Candida....is there any connection between it and the onset of vasculitis?
Dr. Kathy: Can be associated with a secondary vasculitis, like many infections.
Ed Moderator: Actually I'm not positive what candida is? Please explain.
Dr. Kathy: candida is a yeast found in normal people but can cause infections. Thrush a common candida infection.
Gail: Isn't that a STD in women particularly?
Dr. Kathy: Not an STD. Seen in a lot of women after antibiotics, steroids or thos with diabetes.
Ed Moderator: Well, that does it for me. Gail..any questions for Dr. Kathy?
Dr. Eric: We looked at infetious agents as triggers and didn't find any association of candida... ic occurs in immunosuppressed patients
Gail: I'm wondering what does she feel is the very best medication for neuropathy
Dr. Kathy: Like most medications, this is person-dependent. Sometimes we have to try a few to find the right one but.. I have had good results with neurontin, lyrica, and cymbalta. No way to predict which one would be best, we just start with one and go from there.
Ed Moderator: Well, Dr. Eric, I was just thinking. We should get you up here to Pittsburgh for a visit and maybe a visit of new center?!
Dr. Kathy: would be great to hear about your research too!
Dr. Eric: Actually, I'm giving a lecture in Pittsburgh in April. I am not sure of the date, yet...
Dr. Kathy: that would be great! let me know when you're coming if you're interested. Would love to have you at one.
Ed Moderator: Congrats on the new center and I'm sure we can steer some patients your way
Dr. Kathy: happy to be here. Anytime Ed. See you next month Eric!
Ed Moderator: Thanks Eric. Please do. I've love to hook up with you. Take care all. Have a great week.
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