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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


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

    Hi Natty,
    Thanks for reaching out! I did have two infusions of Rituxan. I had some shortness of breath with the first one so they gave me extra steroids and benedryl and ran it over 9 hours - long day! The second one went a lot better and I got the infusion in just 4.5 hours. No major side effects. I have been tired since both infusions, still working from home but taking a couple of cat naps each day. I think it has to do with the steroids. They have me on a long taper starting at 40mg/day and I'm now at 35mg about to get to 30mg tomorrow. The pain and inflammation on the outside of my nose is almost gone but the inside is still very inflamed. I feel like there are some subtle positive changes happening in my nose and there is definitely a lot less bleeding! My nose seems to be running a lot and I'm hoping that will slow down as all of the internal inflammation calms down.

    It's really helpful to think about the 80 days you mentioned. I have been thinking in terms of 2-3 months for the Riuxan to kick in but putting it in terms of days is also helpful. I only had the first infusion just 17 days ago so I still have a ways to go. The doctor said I will probably get another infusion in 6 mos. and then one in a year and my transplant drugs (cyclosporin and 5mg Pred) might hold me from there. I am not sure how they will make that determination but really feel like things are moving in a positive direction.

    This has been an unbelievable experience. I didn't understand that I could ever have a relapse after being treated with Cytoxin in 1992. Feeling very grateful for the Rituxan and for this community which has been super supportive.

    Thanks again,

    Kim

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

    Your post makes me feel bad that I even complain about my issues with GPA, you have it much worse than I do. My kidney functions seem to be fine at this point, I am sorry you are going through this, best wishes that Rituxan works, they may give you an injection of steroids before infusion, benadryl and Tylenol. Sherry

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

    I am glad to read your update. It sounds like you are on the mend and sometimes that comes in baby steps. I am wishing you all the best for the RTX to kick in ASAP for you. Please take good care of yourself. Thanks for your update.
    Jana


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


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

    The same with me during the infusions, I just want to sleep, I think it is the Benadryl, lol

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

    Thank you for all of the kind words. I feel like I am slowly feeling better. Still on 30mg of Prednisone which seems to still be giving me some insomnia as well as some weight gain and just general fatigue. Sometimes I feel like my heart is pounding and wondering if thatís the steroids too? Itís been about 27years since I have been on this high of a dose so itís hard to remember.

    Will taper down to 25mg in another week. The inflammation in my nose is resolving very slowly but still it has been only 1 month since my first of 2 Rituxan treatments. Grateful that I have gone the past month without another ear or sinus infection! Will have my labs done next week to make sure this hasnít had an impact on my kidney.

    Hanging in there, working (and trying to work out!) and thinking that I will be feeling so much better in a couple of months!!

    Many thanks,

    Kim




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