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Thread: Wegeners Special Interest Doctors

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    Default Wegeners Special Interest Doctors

    Hi, I noticed that there isn't any thread on WG SIG Doctors. I am in the Sacramento area, and was looking for WG SIG doctor in the Stanford area. I was told at the hospital that there was a special interest group at Stanfords that deal with WG patients day in and out...

    Anyone have any pointers?

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    Default Don't know the answer

    Sorry, don't know what to tell you about SiG Dr's
    I'm from the eastern part of the country but you could check with the Vasculitis Foundation. They could help you find what you need or at least head you in the right direction.
    Keep us posted as to what info you can find. We're always interested in news of any kind.
    Hope things are well you you today.

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    My husband is seen at UCSF Rheumatology Department. We have been very happy under the care of Dr. Sharon Chung who trained at the Cleveland Clinic. I haven't heard anything about Stanford but I would be interested if you find anything out.

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    Default Case has been submited to Stanfords SIG

    Quote Originally Posted by Terri View Post
    Sorry, don't know what to tell you about SiG Dr's
    I'm from the eastern part of the country but you could check with the Vasculitis Foundation. They could help you find what you need or at least head you in the right direction.
    Keep us posted as to what info you can find. We're always interested in news of any kind.
    Hope things are well you you today.
    My primary care physician researched and submitted my case referral to Stanford's this morning for a review. Awaiting a call from them... will keep the thread posted as and when i have any updates.

    Does anyone know if there are any Doctors who are members of this forum? Would be real nice to have them around for comments etc

  5. #5
    Doug Guest

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    Good luck with the search. There may be others in your area who'd be interested in what you find out. As for doctors, I agree with you. Sangye is a chiropractor. Others may be hiding in the membership, waiting to be "outed"! I would guess that they would be hesitant to give medical advise, however. To that end, anything any of us shares about our own treatment should be regarded as something to review with your doctor or doctors. I am a retired quality analyst, for example. I know a lot about WG and me, but everyone on this forum has a different experience with the dang disease. Somewhere in every posting is a little bit of information, a bit of insight, a difference of perspective that reflects (mostly) a patient's point of view. Think of this more as a patient's forum.
    Last edited by Doug; 07-09-2009 at 09:26 AM.

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    Very well put Doug, and its true, while docs may gaze at our forum, they will not offer advice for fear of malpractice. Unfortunately any comments they make as docs fall under professional advice even when given in a friendly chatter. Further when combined we know more of our symptoms than docs anyway and will be the first to know if there are any new breakthroughs.
    Jolanta

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    Quote Originally Posted by jola57 View Post
    Very well put Doug, and its true, while docs may gaze at our forum, they will not offer advice for fear of malpractice. Unfortunately any comments they make as docs fall under professional advice even when given in a friendly chatter. Further when combined we know more of our symptoms than docs anyway and will be the first to know if there are any new breakthroughs.
    Quote Originally Posted by Doug View Post
    Good luck with the search. There may be others in your area who'd be interested in what you find out. As for doctors, I agree with you. Sangye is a chiropractor. Others may be hiding in the membership, waiting to be "outed"! I would guess that they would be hesitant to give medical advise, however. To that end, anything any of us shares about our own treatment should be regarded as something to review with your doctor or doctors. I am a retired quality analyst, for example. I know a lot about WG and me, but everyone on this forum has a different experience with the dang disease. Somewhere in every posting is a little bit of information, a bit of insight, a difference of perspective that reflects (mostly) a patient's point of view. Think of this more as a patient's forum.
    Thanks for that perspective guys... Never thought of it that way. But i guess the way things are I would have done the same if i were a Doctor. There are people of all sorts out to get you...

    Anyways not sure if I should start a new thread or just continue on this one... But someone slap my wrist if this needs to be a new thread...

    So I had been doing fairly good all this while up until a couple weeks ago, when my LFTs (Liver Function panel) went crazy with ALT peaking at 1500. It started to climb down after a week or so. However it was scary. However my Rheumo needed an explanation. I saw the GI by the time ALT was around 1300 and he was puzzled, Hepatatic Function panel was negative, acetamenophin was -ve. The only explanation was Bactrim or some viral infection. So he suggested discontinuing Bactrim. A week or so later (7/6/09) ALT was at 500. We still do not have an explanation. I don't think we can really blame Bactrim since the trend is not really following Bactrim.

    Anyways, I have started getting bleeding again from nose since about a week. And someone please tell me if I am right on my theory... High level of liver enzymes started rejecting Cytoxan and Predniosone, and WG symptoms started flaring up. Does that make sense to anyone? My Rheumo does not agree but the Ottolaryngologist does.

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    Doug Guest

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    The liver issue reflects the difficulty your system has processing the Cytoxan at the then current levels, is my guess. I agree with you that the improvement in liver function had less to do with eliminating Bactrim (which is prescribed for a specific form a pneumonia- the name escapes me now, but is one you, all other Weggies, and I need to watch out for), and more to do with something else, maybe what you theorize about Cytoxan and Prednisone. Cytoxan made me vomit fairly regularly! Usually, the drug was in my system a few hours before the effect happened.

    Most people find Bactrim is a fairly benign medication compared with the Duo from Hell, Cytoxan and Prednisone. It is, in fact, thought by some (including my doctors) that Bactrim is all that's required to maintain remission, though I was on Bactrim and CellCept from April or May 2005 until December 2007, when my rheumatologists felt it was necessary to take me off CellCept so my immune system wouldn't be shut down too far when I had oral surgery in February 2008.

    The bleeding from your nose is alarming. I don't recall your Cytoxan and Prednisone dosages, but getting the right dosages for you specifically may be what your doctors are trying to do now. I presume they know about the bleeding. If not, it isn't a bad idea to call the doctor prescribing those two medications so she or he is aware of the bleeding and can instruct you accordingly.

    I hope this has been helpful.

    Some of us (I'm terrible about it!) don't follow thread themes very well. I think this series of questions and responses is within the theme of the thread because they seem to indicate doctors need to be involved in adjusting your medication or, at least, dealing with the bleeding.

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    Raj, I agree with Doug about the liver/cyclo/Wegs connection. If your liver is overloaded with toxins, it can't handle the additional toxic load of cytoxan so it just kicks it out of the body. No cytoxan, no Wegs control. It's upsetting that this is puzzling to your docs.

    (PS Doug, check your signature. It doesn't work as a link to your blog. Happy to hear Weggieboy blog is back in business!)

  10. #10
    Doug Guest

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    Try this link...! As they say, 15th times a charm! Or maybe it was 14th... *(p.s. thanks for the reminder to work it out, Sangye! Now all I have to do is keep it more updated. My last one was a bit of a rip, but they all can't be winners. I guess!) (I'm back: it's working now!)

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