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Thread: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

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    Default Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Quote Originally Posted by Alysia View Post
    Welcome to the family, Kim. Your story is amazing and can give hope to many. I tag @gilders who had kidney transplant few months ago. I guess he will be glad to read your story.

    If you get rtx according to the protocol, ususlly there are no reactions. It means getting 100mg steroids before plus benadryl or similar (I get phenergan and 2 paracetamol). They wait 30 minutes after those meds and only then start. Also rtx should be delievered in a very slow rate at first and gradually increase the rate.

    Drink a lot. The reaction that I get is very low blood pressure even 60/40. So I drink and eat something and walk a bit and then its better.

    Please update us how it goes. Sending you prayers.

    Thank you Alysia for the welcome and kind words. I appreciate the reminder to drink a lot and the other details on the infusion. Many thanks also for the prayers - I feel them and they lift me up! I will let you know how it all goes. Thank so much!
    Kim

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    Default Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    I'll be looking forward to hearing how your infusion goes. I usually take my computer to play around on because it takes so long. I think for a first time infusion they go extra slow if I remember right.
    That sounds like a solid plan for your steroids. I know its not great to go through but you will be on the other side of it in better shape than before.

    Kirk

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    Default Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Quote Originally Posted by gilders View Post
    Welcome Kim (and thanks for tagging me in Alysia),

    41 years is great, especially with kidney involvement!

    It's very helpful to read that lowering your anti-rejection meds may have caused the relapse/flare. I'm only 4 1/2 months into my "transplant life" and we're still trying to get everything settled. I am on double the usual amount of antirejection meds (and at higher dosages) mainly because I do have some antibodies against the donor organ. I'd don't think the drs are likely to reduce my dosages too low due to the antibodies. But if they ever try to reduce the meds I'll make sure they're taking into consideration my W.G.

    Since reducing your antirejection meds, has there been any decline in kidney function, or signs or rejection?

    Best wishes and thank you for joining this forum. It's good to have someone to talk to who has more experience in kidney "transplant life". Alternatively, as your last transplant was 25 years ago, I may be able to give you advice on newer drugs and treatment.
    Hi Gilders,
    Congratulations on your transplant and thanks for the note! In the beginning the antirejection drug doses are always high and they take a few months to lower them to your baseline dose.

    Just to clarify....My transplant drug (Neoral or Cyclosporin) was lowered after I had had my transplant for 21 years. The reason for that is two fold. 1) My old nephrologists had retired and so I went to a new (somewhat inexperienced) nephrologist. 2) There is a practice nowadays to try to get patients off of more immunosuppressants, namely prednisone. My body doesn't it make its own cortisone anymore (after so many years on steroids) so I have to take a little every day ie) 5mg. My nephrologist thought lowering the Neoral might be a good alternative. I was ALL FOR IT! I was so happy at first and my kidney didn't mind at all (my creatinine has always run around .9 or 1). A year later, I started having really bad sinus/ear issues. That was 3 years ago, they raised my Neoral back last year and tried a couple of shots and tapers of steroids but nothing has really helped. Now my creatinine is up to 1.14, my nose is a mess and I am really worried I will lose the bridge and they are finally going to start Rituxan. I have really had to advocate for myself but I still feel like this has taken forever, mostly because I wasn't being seen routinely by a Rheum until last year.

    I have had this transplant for 25 years and had one for 10 before that. I was originally misdiagnosed with HSP Vasculitis so it wasn't until I rejected the last transplant that I was officially diagnosed with GPA/WG, even though looking back, all the docs agree, I probably had GPA since I got sick in 1978. Was also on dialysis for 4 years as well, waiting for that last transplant.

    I know I sound like a worrier and I am a bit scared of the Rituxan but I am fortunately still functioning ok and living my life. I haven't missed much work and I try to get on the stationary bike a couple of times a week. Overall life is good but this setback has given me one more reminder of how fragile my health is living with GPA.

    You are going to do great with your new kidney and I am sure they will get the meds stabilized! What drugs are you taking for it? These days, I think a lot of transplant recipients take Cell Cept and Tacrolimus, but I am not sure. Most don't take prednisone.

    Great connecting with you and the other members of the site. Thanks again for your note and I will keep you posted on how I do with the Rituxan. -- Kim

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    It is great to read about people surviving decades of GPA even when the treatment was not as refined as it is today. This should be reassuring for people recently diagnosed.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Hi Kim,

    Welcome! Have you had the rituxin infusion? How are you feeling? Weíre there any problems? I find myself that I feel pretty good for a few days (that would be the solumedrol) my body sure does like steroids! But I really donít feel at me peak for about 80 days. Itís frustrating. I hope this finds you well!
    Natty


    Sent from my iPhone using Tapatalk

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