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Thread: New to forum, not new to Wegners

  1. #21
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    Great news about Sam!! Rituximab usually takes 4-6 weeks to reach full effect, so you should see more improvement over the next few weeks.

    When he begins the pred taper, slower is better. He'll also need to be aware of vague symptoms such as roaming joint paid. They could indicate a flare or a too fast taper.
    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

  2. #22
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    Quote Originally Posted by samsgang View Post
    Hey everyone,

    Just wanted to update. So Sam just got his labs back after his 3rd Rituximab, and all his labs have gone either down in the right direction, or back to normal even. We don't have the Anca results yet, because it takes a few days to send them to the UW. However, I hope this will encourage some one as, last week after 2 treatments we were not seeing improvement. But finally after 3 we are excited to say we have some good news.

    Now we can't wait to at least wean down from the 60 mg prednisone.

    I'm thanking God for this victory.

    Great news, stay the course and more improvement should come!
    Knowledge is power! Wisdom is using it to make good decisions!

  3. #23
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    Hello everyone,

    I just wanted to update, and also see if any of you have any input. So, long story short, after going to the primary care (also an internist), who told me "a Rheumatologist was not one who treated this disease", and hearing from you that it was indeed a doctor who we should see, I was able to self refer Sam. (We have Group Health, which requires an authorization to see any doctors outside of the plan.) The referral was approved, and we were able to get Sam in this past week to the Rheumatologist. The Kidney specialist, (who has been the only one overseeing treatment for Sam) had placed him on 60 mg of Prednisone after his last flare on 12/27/2017. That is the last we have heard from the specialist. The plan was to my knowledge, to place Sam on the Prednisone to help bring symptoms under control, then the 4 infusions of Rituximab, (completed in early Feb.), then I thought he was supposed to be weaned off of the Prednisone. Sam's blood levels are better, but not all the way. For instance, I think he is 3 weeks out from Rituximab, and he is still positive for Anca. His creatinine fluctuates, however, it is still not too concerning. His glucos was 190. Anyways, Sam is now down to 50 mg Prednisone because he was climbing the walls on the 60.

    So back to the Rheumatologist that we saw on Friday, 02/24/2017. He seemed apalled that Sam had been left on 60 mg for so long. And, he mentioned Imuran (?). Then, he found out Sam has not been taking Phosphimax (sp?) for his bones, that upset him. Then, he also mentioned 1 baby aspirin everyday, (which Sam hasn't been doing either.) Luckily, Sam was taking Bacterium. (At this point the Rheumatologist said, "Please tell me you are taking Bacterium?")

    The plan is, the Rheumatologist will be talking to the Kidney Specialist on Monday, to start a titrating plan for the Prednisone.

    My questions for you if I may, again
    1. Is it strange to you, that we were left on Prednisone so long? Or, is that not unusual.
    2. What is Imuran? And have any of you used it? Do you like it?
    3. How about Phosphimax?

    I'd love to hear your thoughts.

    Thanks again, feel free to comment or advise.

    Candy

  4. #24
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    Generic Imuran or Azathioprine is often used as a maintenance med for Wegs. I have been on it for six years. Pred is usually tapered down as one's symptoms decrease since it has bad side effects like moon face and camel hump back if one takes a large dosage for a long time. But if the Wegs is active and causing problems or raising havoc with your body then pred is a miracle drug. Many of us went through this as a undesired side effect for our necessary treatment for Wegs but those symptoms generally fade as the pred dosage declines.

    Fosomax or the generic version is often given with pred to try reduce or prevent loss of bone density which can be side effect of pred. I took it once a week for five years. It can also have some side effects as do most meds so the prescribing doctor will monitor for those.

    Medication treatment for Wegs is best done by some one with lot experience in doing so. Or at least the treating doctor consults with a an expert from the list on the Vasculitis Foundation. I understand this consultation is free and I know my treating doctors consulted with three of the listed experts and I don't remember seeing any charges for their consultations.
    Knowledge is power! Wisdom is using it to make good decisions!

  5. #25
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    Here's my two cents worth.

    The prednisone taper/titer should be done slowly. Otherwise, he'll likely have withdrawal symptoms.

    He should have a TMPT test before going on immuran/azathioprine to be sure his body can process it without difficulty.

    I have been able to maintain adequate bone density by taking calcium supplements. You may want to ask about this option.
    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

  6. #26
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    timmy 10
    Hi guys i had 2 infusions of Retuximab just before Xmas and the first one took about 5 hours done very slowly but the second one about a fortnight later took about 3 to 4 hours.They left me tired but apart from from that no effects.I was on 40mg Pred. but since then my consultant has been reducing them and now down to 15mg per day.Hope this helps

  7. #27
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    Hi everyone,

    Updating again. So my husband is now down to 15 mg of Predinisone. His P3 anca is not down to 3.9AI (from way above 80) Anca Titer is negative and used to be positive and anca MPO is neg. We have seen a steady decrease. He is supposed to continue 2.5 mg titrating every 2 weeks, until he is off. I want him to slow down to 1 mg once he hits 10mg, but the doctor thinks differently. I've read so much from all of the patients, which has lead me to think it is better to go super slow at that point.

    My husband asked the doctor what constitutes remission? Anca scores? And according to the doctor, "no, it is not anca." So we are confused, because he didn't seem to answer that question. Sam's kidney function is staying in good range. The next thing we feel confused about, the doctor said to us, "before we do another round of rituximab, we will just watch his numbers and make sure he stays low, and if numbers start going up, we will do a round of rituximab then." I was under the impression it should be automatic for a few years, that we do a rituximab tx every six months as long as it's working and his lab scores are good. Not to wait for it to flare, and then treat it. (Why wait for the forest fire to start up again?) I feel like our doctor is head strong, and I hate to challenge him, but maybe I should. The joys of it all.
    Last edited by samsgang; 05-05-2017 at 01:49 PM.

  8. #28
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    Oh and another question, what is plasma tx? And also, what is B cell. Or more accurately, with Rituximab, what should we be aware of in that area. I've heard it mentioned but haven't figured out if it is good or bad?

  9. #29
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    I am glad that your husband is getting better.

    I think you are right that it is more safe to taper the pred by 1 mg for each step. I would do it even if the dr. said otherwise.

    As for rtx, there is a controversy: some docs, like yours, say that one needs to wait for a change, indicating that wg is starting to be active and only then get rtx. Others, like mine, say that it is better not to allow the wg beast to raise its head, so they give rtx every 6 months or even every 4 months.

    I think it is also a matter of maintenance meds. Will your husband take any, like methotraxat, Imuran, cellcept ?
    I coouldn't bear Imuran and mtx did nothing, so my only wg med is rtx. It means that I have no other choice.

    You asked about remission: check this thread, maybe it can answer your question...
    http://www.wegeners-granulomatosis.c...questions.html

    Never be shy in challenging any dr. It is your right and your duty to make sure that your husband will get the best care possible.
    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.

  10. #30
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    I hAVE HAD GOOD LUCK WITH IMURAN!!!

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