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Thread: Rituxin - C19 and C20 and length of B cell suppresion

  1. #21
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    I hope to be able to get onto RTX one day, but until then, keep up the great job with the info in this thread.

    Regards Woz.....

  2. #22
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    Quote Originally Posted by Gab122 View Post
    Thats great news Max!

    A couple follow up questions:
    So if I'm on 60 mg prednisone daily and just had 2 infusions of ritux in August, does that make me currently immunesuppressed (A little? A lot?).
    I guess I didn't think the prednisone was part of immune suppression. I thought it was an anti-inflammatory drug (same thing?)

    Please educate me if I'm wrong. I thought the Rituxan stopped the disease activity from continuing and the prednisone cleaned up the mess from the previous disease activity (like shrinking granulomas) ?

    So I must still have my T cells? Not fully immune suppressed? Do the T cells house the info of my previous vaccines? Or was that on B cells?

    How does the immunoglobulin levels play into all this? Do they ever test your ANCA levels too (I know that's a debated activity indicator)

    Lastly, being in remission, how do you feel? Do you feel like you did before GPA? If you've mentioned how you feel in other posts forgive me for forgetting... I'm the new kid on the block and mix up everyone's stories somewhat.


    Gab
    Gab,

    Prednisone (high-dose and/or long-term) is immunosuppressive, inhibiting the actions of both B- and T-cells. While on prednisone one has to be careful about viral, bacterial and fungal infections.

    Rituxan does not kill T-cells. They target the B-cells that produce antibodies, including ANCA, and bring the disease in remission. The strong anti-inflammatory power of prednisone immediately relieves symptoms and fends off further harm to the body, but does not stop the disease. The downsides of prednisone are the various side-effects which I'm sure your doc must have told you about - there are so many threads on this forum as well. Mercifully, not everyone will experience all the side-effects - so don't let all you read scare you.

    I do get tested for PR3 levels. The immunoglobulin levels indicate how well my system is able to fend off viruses etc.

    It took me a good 6 months after stopping prednisone to get back to normal. As I was tapering down on prednisone, I had a hard time once I got down to 7.5mg. Mostly aches and pains and stiffness, especially in the mornings and after sitting too long. Moving around helped. Nothing debilitating though. AFter 6 months I started exercising regularly and have kept that up. So now, aside from the tinnitus and eustachian tube dysfunction, I feel better than before the GPA symptoms started.

    Hope this is helpful. Having been through this recently, I know how worrisome every stage of diagnosis and treatment is. When my doc said I should see her every two months instead of one, I felt like I was being abandoned. So even recovery brings new worries. But, really, you will get through this and you will feel good again - just take it easy and be kind to yourself! Good luck.

  3. #23
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    Hi Gabby,

    You are immunosuppressed. To what degree is essentially unknown. Probably enough to keep the GPA symptoms in check.

    Prednisone is the anti-inflammatory part of the treatment. When you're having major symptoms, you need more cortisol to tone down the inflammation.

    As the immunosuppressant does its work, the symptoms and inflammation decrease. You should be able to start tapering off the pred sometime in the next few weeks.

    When tapering off pred, do it slowly. Your body has stopped making cortisol, and the slow taper gives the adrenal glands a chance to return to their normal function. Sometimes, people can't get off pred altogether. Once I go below 3-4 mg/day, I start having symptoms again. I have been on 5 mg/day for over two years with no issues.

    I'm in remission. I feel the same as I did before I got sick. I do a lot of what I did before. I retired about 9 months before I got sick, so I no longer have the stressors of working.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  4. #24
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    Thank you Max and Pete for all the info! I find I "thirst" to hear other patients' experiences with this disease tho I know everyone is different.

    I will taper slowly and will start when Dr. advises me too. Hopefully I will get instructions to start and how to proceed with the taper at my sept 9 appt (in one week!)

    I'm glad you are both doing well! I'm feeling pretty good (much better than before Treatment started!) and know I'll continue to improve.
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

  5. #25
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    Quote Originally Posted by Gab122 View Post
    I just realized something. If B cells are continually killed off with ritux when they start to return, are we in a constant state of immunesuppression? I kind of thought the immunosuppression was going to be temporary? No?

    ...

    Maxd and middlesista - I read both that B cells come back at 4 months and I read 6 months. ??? I guess it's not exact. MGH informed me that I'm to have my 3rd ritux infusion in mid Dec. (3.5 mos after 2nd)

    Also I was wondering... (Because I read and heard that B cells have memory) that if you wipe them out long enough they may forget all together about attacking (via GPA.)

    But that makes me wonder, will they forget how to fight all the colds and vaccines I previously had? I had chicken pox as a kid (and shingles as an adult) will my body forget it's immune to chicken pox?

    Max d, I was told that the reason there are multiple rounds of ritux (1 week or 2 weeks apart) is because there are B cells that "hide" in the lymph nodes the first go-round and so the next infusion gets them

    Great thread!!
    Some great thoughts and questions Gab! I also thought the B cell suppresion was of a shorter duration but it seems to vary and I never knew about the shy B cells hiding in the lymph nodes - sneaky devils. I am also interested to learn about the B cell memory and how they play a role?
    Last edited by Middlesista; 09-03-2016 at 09:58 AM.

  6. #26
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    Max and Pete - you are both a wealth of information - thanks so much for sharing your knowledge and experience!!

  7. #27
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    Sister, my WG dr. doesnt use C19 & C29 as an indication to do or not to do another rtx. They can be zero even during a flare !
    He looks at the general picture. Mostly symptoms.
    He is not working with "the less is better" attitude that you mentioned above but with the opoosite one: he prefers to attack the wg beast as strongly as possible and not to wait for the beast to raise its head. He says that if we keep the beast sleeping long enough, it is possible that the immune system will do "reset" and will forget to attack itself, which means long remission or even healing.
    He is sending me to rtx every 6 months. 2000mg. When I was late in 6 weeks to go for it, I was out of remission.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  8. #28
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    This is a great thread ! So from what these post say,being on higher doses of pred and having rituxan at the same time would probably be the easiest to then get an infection. Being that both B and T cells are depleted? One allowing you to get the virus, the other allowing it to settle into an infection? maybe thats too simple. I came on here today because this is exactly where im at and i was looking for this answer. I am on 20 mg of pred(coming down from 40) and i had rituxan 2 and 4 weeks ago. I have a virus that my children have. Stuffy nose n cough. So how long do i wait to see if my body fights it? or do i need to be right on it with dr?

  9. #29
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    Actually blessed, I think you (and I) still have out T cells. But we are immunesuppressed right now due to high pred and ritux. I hope you and the kids feel better soon!! Rest up and chicken soup! 😉

  10. #30
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    Quote Originally Posted by Alysia View Post
    Sister, my WG dr. doesnt use C19 & C29 as an indication to do or not to do another rtx. They can be zero even during a flare !
    He looks at the general picture. Mostly symptoms.
    He is not working with "the less is better" attitude that you mentioned above but with the opoosite one: he prefers to attack the wg beast as strongly as possible and not to wait for the beast to raise its head. He says that if we keep the beast sleeping long enough, it is possible that the immune system will do "reset" and will forget to attack itself, which means long remission or even healing.
    He is sending me to rtx every 6 months. 2000mg. When I was late in 6 weeks to go for it, I was out of remission.
    Alysia- I have read that other folks also have RTX on a regular basis to prevent any reoccurence and with the thought of forcing a reset of the B cells with a long enough suppression.

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