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Thread: New to forum, not new to Wegners

  1. #11
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    Welcome! So many kind and knowledgeable people here. We have found this site to have the most information.

  2. #12
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    Welcome to the forum,it is the best group of people that is out there for information and support. I am wishing Sam all the best for his Rituxan treatments. Please keep us updated on his progress. Every thing will be better soon.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  3. #13
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    Hello my friends,

    So, I want to update you on Sam and his progress. I guess also, we feel a bit bewildered in the medical field department. For starters, we have Group Health. That being said, we are kind of stuck with their providers they offer, if we want things to be paid. So our Kidney Specialist is the main treatment coordinator. I think he has done well up until around Christmas, and Sam's last flare. That is when we started to feel somewhat forgotten. Long story, being in the medical field and working for a specialist, I knew if we didn't hear from them in a timely manner, to call. (we were waiting to schedule the rituximab infusions) long story, they were waiting for us to call and set up the the appointments. (Joy) So we may have started a week later than we could have, to begin with. Second, the doctor put Sam on 60 mg Prednisone and he has been on that while waiting for his first infusion, (which he finally had on Jan.13th) so he has had 2 so far, with two more to go. He has them 1 x weekly with 4 total treatments in all this round. So it went fantastic the last 2 times, and his next one is tomorrow. I'm talking, "are you sure they didn't just give you water?" he felt so normal.

    Onto the labs. The area for Sam that Wegner's likes to rear it's head is the kidneys. His Anca titer labs as of this past Monday the 23rd went from a ratio of 1:68 to 1:16. Happy about that, still not negative, but a bit better. His Creatinin went from 1.4 to 1.9. And his GFR went from 59 down to 38. We haven't heard from the Specialist. Luckily, we made an office visit with our regular provider, they said it could be dehydration.

    So my questions for you experts, I told my husband, the true experts on this disease are the patients. In my opinion anyways.

    1. Is it normal for Sam's labs not to have improved after two infusion treatments?
    2. Should we be concerned about labs moving in a direction that seems worse after two infusions?
    3. If Sam had been treated with Cytoxin for 6 months, and it worked, and they took him off for low blood counts, is it common to be placed back on that if rituximab does not work?
    4. What is the protocol w/ Rituximab if it does start working? Do they normally do 4 treatments in a row, break for 4-6 months and then back at it?
    5. Is this a big deal we have been on 60 mg prednisone with no end in site?

    Do you ever feel like you've annoyed the providers with all of the questions? Anyways, our Kidney Specialist doesn't always get back to us, and the regular provider's main response was, "yeah, I'm not sure." and, "this disease is a mystery." Oh boy. They only positive we got is that the GFR is not yet near dialysis stage. (Great but when will this stuff kick in, and is it alright to wait another week?)

    Finally, I know you are not Doctor's, so no worries if you tell me to go back to them and ask. I think our Kidney Specialist is doing his best. I also know, we are not his only patient. I tried to get a referral to a Rheumatologist by our Primary care doctor for this disease, her reply to us was, "no, they are usually joint doctors." I get that, but we had one on our case 20 years ago, she was great. Her name was Nancy Shasteen, but I'm not sure she is still in practice, and again it would be out of network.

    Thank you for listening. Any insight would be appreciate. Feel free to offer advice too. Thanks you!

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    The rheumatologists are often or maybe the usual doctors for directing treatment for GPA so I would question his knowledge on how to treat GPA. Those questions and the answers should be answered by some one with extensive knowledge and experience in treating GPA and there are a number of them listed on the Vasculitis foundation Web site, and I believe they consult for free on cases.

    In my case I was treated with CTX almost a year and my treatment team said it would not be used again, just RTX if i had a big flare. I believe the risk of bad side effects increase the longer it is used. I think generally the goal is to get the Wegs under control and then reduce the pred to the lowest level that will help hold the disease in check. I was able to get down to 5 mg day plus my AZA but some can't get under 10 and a few people have great difficulty getting the GPA (Wegs) under control with any med routine but most people do with proper treatment. There is no one certain treatment that will be effective for everyone but the more experience the doctor has in treating this darn disease, the better the chances of success I think. I would push for that. I believe Ronald Falk is the expert my kidney team used and he is highly regarded as a expert in treating GPA. I am sure there are others too that your doctor should know so push him to do a consult with one. This would be reassuring to you.
    Last edited by drz; 01-27-2017 at 08:22 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by samsgang View Post
    So my questions for you experts, I told my husband, the true experts on this disease are the patients. In my opinion anyways.
    From all of us here, THANKS! (-8


    Quote Originally Posted by samsgang View Post
    1. Is it normal for Sam's labs not to have improved after two infusion treatments?
    Yes, with this disease, there are no immediate reversal medications--well maybe with boat loads of pred, and that is because it decreases the inflammation pretty harshly and rapidly in higher doses.

    Quote Originally Posted by samsgang View Post
    2. Should we be concerned about labs moving in a direction that seems worse after two infusions?
    Treatments take time to get going. It will probably be that way until the meds run their course and start to work. Until then, the disease is still active and probably getting worse until the meds have time to work.

    Quote Originally Posted by samsgang View Post
    4. What is the protocol w/ Rituximab if it does start working? Do they normally do 4 treatments in a row, break for 4-6 months and then back at it?
    I had the four to start, and I have been on two, two weeks apart, every six months for almost 4 years now. My rheumy is managing my care, and as long as the RTX keeps the disease at bay, and my insurance keeps approving, then we'll keep going every 6 months.

    Quote Originally Posted by samsgang View Post
    5. Is this a big deal we have been on 60 mg prednisone with no end in site?
    Not uncommon. I was on it for more than a month after my first significant flare-up.

    Quote Originally Posted by samsgang View Post
    Do you ever feel like you've annoyed the providers with all of the questions?
    Yea, but let them be annoyed, they're getting paid to listen and take care of YOU and YOUR FAMILY!! If they stop listening, find ones that will.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  6. #16
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    Thank you both for the responses! I feel better after seeing the list of answers! My heart goes out to Sam tonight, after being on Prednisone @ 60mg since Dec.23 and the dose of steroids they gave with the Rituximab today, Sam's face is so swollen. It makes me realize how blessed we were to begin with having a 20 year remission with out medicine. When he swells up, it makes it so much more real to me the battle that he is fighting in his body.

    Your answers also helped me realize, I will be finding a Rheumatologist to get on board soon. (That didn't sound right when the Doctor said that to me.) I mean also, doesn't this affect the joints? I know Sam was sure limping around for 2 months back in April!

    Well, he is snoring away on the couch, and I feel better after reading the answers. I will go cruise around on this forum while he sleeps.

    Good night for now.

  7. #17
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    Hi. I understand how tough it is to be the caretaker. Dont ever be too shy and dont stop to "annoy" the docs as much as needed. Your husband is blessed to have you as his advocate.

    I was on pred 60mg for 5 months at the acute onset of my wg.

    It takes time for rtx to work. Each case is diffrent. For me it reach its full impact after 3 months. For others - earlier. Meantime the pred is important.

    Sorry for the rise of the creatinine from 1.4 to 1.9. I hope its temporary. Ask to check the creatinine every week. Please make sure that your husband is not dehydrated when he gives blood to check it. I dont have kidneys involvement but my numbers are up to the high border when my wg is active AND when I am dehydrated.

    I get rtx since 2013 every 6 months 2000mg in 2 sessions.

    Sending prayers.
    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. #18
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    Thank you for the understanding and reply. You know what my husband is currently doing at this minute due to the steroid high? He is ripping the ceiling off of our old 1926 farm house kitchen. He has always been a go-getter in general, so he has decided he better put the anxiety of the steroid to good use. I keep telling him, "if your going to do it, just take it easy in between, because you can still over do it!" (I on the other hand am the easy going, not so go-getter, so I could care less how long the kitchen takes.) But I think it helps to keep his mind off of it all! Thanks again for all of your quick replies and support. This group means so much. No fun walking this road, but it is easier together.

    God bless you all my friends!

  9. #19
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    Quote Originally Posted by samsgang View Post
    Thank you for the understanding and reply. You know what my husband is currently doing at this minute due to the steroid high? He is ripping the ceiling off of our old 1926 farm house kitchen.
    Some times sheer exhaustion is the way to be able to sleep when on high doses of pred. Just have him be careful with his skin. Over time the pred will make it a little thin--mine did anyway.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  10. #20
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    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.

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