User Tag List

Likes Likes:  0
Page 3 of 5 FirstFirst 12345 LastLast
Results 21 to 30 of 47

Thread: Questions for Dr Seo

  1. #21
    Join Date
    Feb 2010
    Posts
    71
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi!

    I have two questions for Dr. Seo:

    1. Is it okay to be on long- term low dose prednisone (5 mg. or less) to control symptoms such as nasal /ear symptoms, for example, that otherwise would return if one were not taking the prednisone and seems to be effective in controlling these symptoms?

    2. Can other autoimmune diseases such as sjogren's syndrome and/or rheumatoid arthritis, for example, co-exist with wegener's?

    Sangye, I would just like to add that I think it is very thoughtful and considerate of you to ask if anyone here has a question that they would like Dr. Seo to answer!

  2. #22
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Beeinformed, I know the answers to both of those. I've been stuck at 2.5mg pred for quite some time and have asked him about that. He says anything 5mg or less is not that big a concern, though he admitted they really don't have enough info on the long-term effects of doses below 5mg. He would definitely prefer that we're off pred entirely, but if a very small dose is necessary to keep the Wegs under control then it's necessary.

    In your case (as in mine right now) the question comes down to: Are your symptoms due to damage from Wegs or from active Wegs? If it isn't active Wegs (or is a very low level of activity) then that doesn't require pred. We're going to have another conversation about all this because I saw an endocrinologist recently who has some input. I'll post his response.

    It's not uncommon for people with an AI disease (any type) to get another one. That's pretty well-established.

    I'm happy to do this for others.

  3. #23
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I saw Dr Seo today and got some great info. He sure is wonderful about taking the time to answer anything I ask. I'll address some of the things he said about my own case in another thread.

    1) Why are some colds I've gotten since being on rtx ridiculously short in duration (eg 36 hrs)?
    Most of the symptoms from a cold are due to the immune system's reaction, as it mounts a huge effort to get ride of the virus. With a weaker immune system you don't get the big reaction.

    2) Why did they use 1,000 mg solumedrol per rtx infusion in the RAVE trial, but they use less now?
    When they began using rtx for Wegs in 2003, they had no idea how it would behave. They were totally in the dark. They used the highest dose of solumedrol possible to prevent allergic reaction. As they've used rtx more, they've found that they can get away with less.

    3) Why do some docs do the rtx infusions without any solumedrol?
    Because not everyone will have an anaphylactic reaction to the rtx. However, many people will have a reaction and when it happens it's very bad. It's risky not to use any solumedrol. Also, if they do have a reaction they might not be able to use rtx again as the body has figured out that it's a foreign substance. He would not give rtx without solumedrol.

    4) Why do some people require 4 infusions of rtx instead of 2 (ie, 2 infusions don't get the Wegs under control)?
    He believes this happens more often with "larger" people. The dose of the 2 infusions is not weight-based but the dose for the 4 infusions is. Also, he's noticed that larger people seem to need the once-a-week dosing. (This confirmed my hypothesis. Score 1 for Sangye. )

    5) The RAVE trial used the 4-infusion protocol, so where did the 2-infusion protocol come from?
    Every other AI disease that is treated with rtx uses a 2-infusion protocol. When they tried this with Weggies in their clinics (ie, not in studies) it seemed to work just as well as 4 infusions for many people. It's less rtx, which means less exposure to the drug-- a good thing.

    I'll post the rest in a second segment...
    Last edited by Sangye; 07-28-2011 at 10:19 AM.

  4. #24
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    We talked about rtx in much more depth than usual:

    1) Since rtx always destroys the B cells, why doesn't it always work to control Wegs?
    About 70% of people respond to rtx. That's on par with other drugs. The thing is, only about 10% of the body's B cells are in circulation, where rtx can find them. That means 90% of the body's B cells are in tissues (eg, bone marrow, joint fluid) and are therefore "hidden" from rtx. It could be that those hidden B cells are the trouble-makers-- to a greater or lesser extent in various people.

    This hidden population of B cells also explains why symptoms can return before the B cells return.

    2) How is it that some people have one round of rtx and go into lasting remission?
    Prolonged remission happens in about 25% of people. The other 75% deal with recurring disease regardless of which drug they've been on.

    3) For people treated with rtx, why doesn't Wegs flare as soon as the B cells return?
    We don't know. There are so many types of Wegs activity-- severe, moderate, minimal (he called them "Wegs Lite" LOL), or maybe the person has borderline Wegs (ie, the body hasn't fully developed the disease).

    Dr Seo said some things about Wegs and rtx that were very surprising:
    No one really knows exactly how rtx works to control Wegs. Yes, we know that rtx targets the CD20 receptor on B cells and kills the B cell, but we don't know how that controls Wegs. In fact, they don't fully understand the mechanism of Wegs itself! They used to think T cells were the issue with Wegs, not B cells.

    He said it all makes for a good story-- bad B cells produce antibodies that attack the blood vessels, rtx kills those B cells and the Wegs gets under control-- but there are huge chunks missing from the story. So they are really still in the dark about Wegs, much less rtx. I thought this was fascinating.
    Last edited by Sangye; 07-28-2011 at 10:22 AM.

  5. #25
    Join Date
    Apr 2010
    Posts
    909
    Post Thanks / Like
    Mentioned
    14 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thank you Sangye for asking the questions and giving us this great summation. Very interesting. My doc is doing something with me that I had not heard of before. He told me tha a 'a guy in England ' has been having good results with a single dose of 1000 mg of rtx at six months to maintain remission. I asked if it was Dr Jayne and he didin't know. Apparently this info is not from a trial but from someones practice.
    Now I guess I will become part of his practice.
    I asked what the down side was to giving more and he said "Well, somebody had to pay for it for one thing". I hope he was being a bit flip
    because where my central health is concerned , paying for it is not an option to worry about. I assume tha it also reduces risk from exposure to rtx. I get the sense my doc is somewhat leary of it. He is cautious with new treatments that have not a long track record.
    I appreciate that sort of caution.
    So in September I will get my rtx 'booster shot'. I will be interested how it makes me feel. Its not THAT far away. My health has been imroving on rtx, reducing prednisone (yay. Down to 30 mg for first time in a long time. Not exactly low but not 60 mg either and HEADED in the right direction for a change. And taking low dose methotrexate.)

    Very interesting the science and the gaps in science we are dealing with here. Thanks again for the report. I hope you are doing well.
    We need to get you back into the general population as well as my self. Its been 12 years of battle for me and I am feeling myself inching back towards a more mormal life. I hope the same for others here.
    After such a long period I want to add that my work with my 'shrink' and my dreams has been extremely helpful with this process. Its not that easy. To quote a song "I've been too long in the wasteland".

  6. #26
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    That's very interesting, me2. Dr Seo is also very cautious about rtx. At every visit he reiterates that the thought of me using it for the next 10 years (at least) is worrisome due to my "young" age (47). I hope the one dose of rtx works for you. I'm so happy that you're improving!

    When I began therapy my therapist said it would be hard work and I'd have to go through some pretty dark days for awhile. She sure was right. Glad your therapy is helping you so much.

  7. #27
    Join Date
    Dec 2009
    Posts
    752
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thank you Sangye for the wonderful information! I think I will bring a few of these questions to my doc at Mayo and see what she has to say as well
    I'm pretty curious to why I didn't have the solumedrol each infusion. Just the first infusion for each round. Sounds like we need it in case of a reaction.

  8. #28
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    As much as I can't stand solumedrol, I wouldn't want to lower the dose or stop using it during the infusions. I've watched more than one person go into anaphylactic shock during infusions for other drugs. It's terrifying.

  9. #29
    Join Date
    Aug 2010
    Location
    Essex, UK
    Posts
    992
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Sangye View Post
    No one really knows exactly how rtx works to control Wegs. Yes, we know that rtx targets the CD20 receptor on B cells and kills the B cell, but we don't know how that controls Wegs. In fact, they don't fully understand the mechanism of Wegs itself! They used to think T cells were the issue with Wegs, not B cells.

    He said it all makes for a good story-- bad B cells produce antibodies that attack the blood vessels, rtx kills those B cells and the Wegs gets under control-- but there are huge chunks missing from the story. So they are really still in the dark about Wegs, much less rtx. I thought this was fascinating.
    Wow, this is all very interesting for me as someone about to start out on RTX.

    Solumedrol - Why dont you like it Sangye?? And this wasn't mentioned at my last visit to Addenbrooke's maybe they'll talk about it nearer the infusion date. And they also said that it was very rare for people to have a reaction to RTX...hmmm.

    Why dont they base the 2 infusions on weight but they do with the 4? This concerns me as a larger person. It was mentioned that they would look to getting my weight down after i come off MTX and Pred. As for me i cant wait to get off the stinking Pred.

    Thanks for asking Dr Seo Sangye, what a guy.
    "I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack

  10. #30
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Solumedrol is super high dose pred. The 100mg of solumedrol I get with each rtx infusion is equivalent to 155 mg pred. I've never--not even on 1,000mg solumedrol-- gotten the increase in energy from pred. It's always made me much weaker. So the big hits are really bad.

    Even if you get solumedrol before an infusion, you can still have a reaction to rtx. THAT is very rare but possible. Dr Seo said not everyone will have a reaction to rtx if no solumedrol is given, but the risk is too high.

    I have no idea why they don't base the 2 infusions on weight. Wish I'd asked.

Page 3 of 5 FirstFirst 12345 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •