User Tag List

Likes Likes:  64
Page 1 of 2 12 LastLast
Results 1 to 10 of 20

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

  1. #1
    Join Date
    Jul 2019
    Location
    Washington, DC
    Posts
    12
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

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

    Hi everyone,
    I am happy to have found this site and find all of you here. I am 54 and have had Wegeners for 41 years. I was originally misdiagnosed when I was 13 with Henoch Scholein Purpura. Once the WG/GPA was diagnosed, I took oral Cytoxan for a year and the WG/GAP went into remission. I have had a kidney transplant for 25 years and had one for 10 before that. Like many of us with a long-standing chronic illness, my medical history is super-complicated. That being said, I live a very full life and feel blessed to be living it!!!!!

    One of the things that is so amazing is to see how medicine has changed for the better in those 41 years!! When I first got sick in 1978, the ANCA test, didn't even exist! Even Cytoxan wasn't being used much then and so the steroids, Imuran and 4 years of dialysis helped push me along long enough that I was able to be helped by the ANCA and Cytoxan in 1992. Now Rituxan seems like a miracle drug compared to Cytoxan.

    Four years ago, 21 years in to my transplant, my nephrologist lowered my transplant drugs. I was so happy and felt great. Her thought was that I didn't need as much immunosuppression as I got older and less Neoral would be better for me in the long run. About a year later, I started having ongoing sinus and ear issues that have gotten progressively worse. I have always had sinus crusting and a deviated septum but it was all manageable. In the last 3 years I have had over 30 doctor appointments (with Primary Care, ENT, Rheum) about my sinuses and ears. I have had to be the one pointing out that this is a flare, demanding treatment and it has been a difficult long road. I was not seeing a Rheum regularly because, my old Neph used to managed everything. Nowadays, the new younger Nephs only do kidney stuff and won't hear much about my sinuses. My neph forced me to get a Primary Care doc and see my ENT, which I think only diluted how many issues I was having.

    Anyway, I am likely starting Rituxan in 12 days. I wish I could get it tomorrow. My nose is so painful. My steroids have been increased to 20mg/day and I am pretty miserable, worrying that my nose will cave in while I sleep! Yikes! The bleeding has slowed but I have granulomas in my nose, it's completely blocked and super-painful. Just hoping I can go 12 days. Plan is to see a top Vasculitis Specialist in 10 days just to get a second opinion and then be ready for the infusion 2 days later.

    I am worried about having an allergic reaction, simply because I am the type of person who is allergic to cats, horses, some meds, etc. Does that matter?? Praying I don't react and it works! Feeling grateful that I can take it instead of the Cytoxan. Thanks for listening everyone!

    Be well,

    Kim

  2. Likes drz, Dirty Don, Keith, Alysia, Jaha liked this post
  3. #2
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,150
    Post Thanks / Like
    Mentioned
    10 Post(s)
    Tagged
    0 Thread(s)

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

    Hi @Kim,

    I guess we should congratulate you for surviving 41 years with wegs. Amazing!

    You probably wonít have any reaction to rituximab. I have allergies to horses as well as hay fever. Since I was diagnosed, Iíve taken 10 mg of loratidiene and 10 mg of phenylephrine each day to keep my sinuses dry. Both are OTC and have worked well for me.

    Do you rinse your sinuses to flush out the crusties? That may help soothe your sinuses as well.
    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. Likes drz, seied, Dirty Don, Alysia, Jaha liked this post
  5. #3
    Join Date
    Jul 2019
    Location
    Washington, DC
    Posts
    12
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

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

    Quote Originally Posted by Pete View Post
    Hi @Kim,

    I guess we should congratulate you for surviving 41 years with wegs. Amazing!

    You probably wonít have any reaction to rituximab. I have allergies to horses as well as hay fever. Since I was diagnosed, Iíve taken 10 mg of loratidiene and 10 mg of phenylephrine each day to keep my sinuses dry. Both are OTC and have worked well for me.

    Do you rinse your sinuses to flush out the crusties? That may help soothe your sinuses as well.
    Hi Pete,
    Thanks for your message! Good to hear words on encouragement on the Rituxan! I have only been doing nasal rinses to clear crusts for about the last 20 years. I started doing them to help clear a clogged tear duct in my left eye and really worked well. I have worked full time for 30 years and it could get a little embarrassing when I would tear up during a meeting or presentation. With this relapse, which I think actually started after a severe cold in 2016, I haven't had much crusting. It's been more "bleedy" and raw escalating to super-inflammed granulomas. Over the past year, they have tried to treat it with a couple of intermuscular steroid shots, steroid tapers, antibiotics, adding a steroid solution to the nasal rinse, mupricin and even using steroid eye drops in my nose. It would seem to get a little better and then just run back to intense inflammation.

    I am hoping that after the Rituxan, things will settle down and the crusts return like they had before. Compared to this, the crusting was great, which I am sure sounds strange! It's probably a long shot and I may have more ongoing maintenance issues but I am trying to keep a positive mindset. I know I have lost more of my septum but my ENT assures me you can live without it.
    I usually take Allegra during allergy season but with all of the extra sinus rinses I was doing this year, my allergies weren't too bad. I'll have to see was my ENT recommends regarding ongoing maintenance.

    Well thanks again for your note. It's good to know that a tendency towards regular allergies didn't significantly impact your treatment. Take care and be well!
    Kim

  6. Likes andrew, Pete, drz, Alysia, Jaha liked this post
  7. #4
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    185
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

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

    Hi Kim,
    Welcome. Wow, your Wegeners journey has taken you down a long hard road!
    What you have already done for the nasal problems are all the things I would suggest.
    As far as the Rituxan infusions I did not experience problems. My infusions also included Benedryl and prednisone. After the first series of infusions I did have some leg pain for a day or two, but nothing too bad. Since you are still working are you scheduling your infusions for Fridayís?
    I do have a hole in my septum, but not yet saddle back. At first, my heart dropped to my stomach when I visualized my nose sinking. But there are others on this site who offered me comfort. They suggested wearing glasses to fake it out. I also talked to my ENT, a surgeon, who has performed some of those surgeries. I will be 70 on my next birthday, and I just donít want to go down that road. So for now, I have just kind of put it out of my mind until when and if that happens.
    You have been through so much. I am sorry you are going through more now. At least you know your way around doctors offices. Many go to rheumatologists who are not Wegeners experts, but I doubt that is the case with you. I wasted some time before I found my way to treatment at Duke. I hear great things about Cleveland Clinic too.
    Sending prayers your way.
    Masha

  8. Likes drz, Keith, Alysia, Jaha liked this post
  9. #5
    Join Date
    Jul 2019
    Location
    Washington, DC
    Posts
    12
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

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

    Thank you Masha for your prayers and words of encouragement. They mean a lot! Still counting the days (and hours) to my appointment at Hopkins Vasculitis Center next week and my infusion two days later in Washington DC (fingers crossed all goes as planned). My infusions are scheduled for Thursdays but I work from home so I should be ok.

    I am still in a lot of pain with my nose and my Rheum said I could go in for another steroid shot but I am hoping I can just wait it out until the Rituxan, as I know I will get extra steroids at that time. Hope to make it for 1 more week! Just trying to get through each day as best as possible but I feel pretty miserable.

    I already have a "saddle nose" but my ENT told me years ago that "people would pay money for that nose" - probably just trying to make me feel better . Praying my nose does droop any more.

    Thank you again for your note and prayers. I can feel them and they lift my spirits.
    Kim

  10. Likes Masha, drz, Alysia, Jaha liked this post
  11. #6
    Join Date
    Apr 2010
    Posts
    809
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

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

    You have had WG for a year longer than I have. I think we probably have a lot in common from what you have shared so far. I have had allergies to many antibiotics and when I got my first Rituxan infusion it was very early and had not yet been approved for WG.
    I have to say I was pretty scared of an allergic reaction because of things I had read. I had no allergic reaction. Even if I had a reaction I know now the infusion nurses are well trained and skilled in dealing with one. They will take good care of you.
    I have had many infusions since then and tolerate it pretty well. You will "feel " some things though so don't panic. I think most of that is from the horse dose of solumedrol they give you with the Rituxan. Anybody would feel a bit off from a shock like that. Now- I often fall asleep during infusion. It's just boring and I ignore feeling a bit off.

    It goes pretty smooth for most people- you can be one of those people.

  12. Likes Alysia, drz, Jaha liked this post
  13. #7
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,046
    Post Thanks / Like
    Mentioned
    22 Post(s)
    Tagged
    0 Thread(s)

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

    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.
    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.

  14. Likes Masha, Jaha liked this post
  15. #8
    Join Date
    Sep 2013
    Location
    England
    Posts
    765
    Post Thanks / Like
    Mentioned
    27 Post(s)
    Tagged
    0 Thread(s)

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

    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.
    Diagnosed April 1995

  16. Likes Masha, Alysia, Jaha liked this post
  17. #9
    Join Date
    Jul 2019
    Location
    Washington, DC
    Posts
    12
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

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

    Quote Originally Posted by me2 View Post
    You have had WG for a year longer than I have. I think we probably have a lot in common from what you have shared so far. I have had allergies to many antibiotics and when I got my first Rituxan infusion it was very early and had not yet been approved for WG.
    I have to say I was pretty scared of an allergic reaction because of things I had read. I had no allergic reaction. Even if I had a reaction I know now the infusion nurses are well trained and skilled in dealing with one. They will take good care of you.
    I have had many infusions since then and tolerate it pretty well. You will "feel " some things though so don't panic. I think most of that is from the horse dose of solumedrol they give you with the Rituxan. Anybody would feel a bit off from a shock like that. Now- I often fall asleep during infusion. It's just boring and I ignore feeling a bit off.

    It goes pretty smooth for most people- you can be one of those people.
    Hi Andrew,
    Thank you so much for your message and kind words. They really give me a lot of comfort before my infusion tomorrow. I will prepare for the "feeling" of solumedrol. I think I remember it from the old days so I will expect that. I will let you know how it goes tomorrow. They put me on 40mg of steroids two days ago because my nose is such a mess and it sounds like they want to leave it at about 30 through these first two infusions and then taper (very slowly) back down to the 5mg I have been taking for 25 years. I just keep thinking that by the new year, I will be feeling a lot better.
    Thanks again for the kind words - holding good thoughts that I will also have a boring experience ! I will let you know. Kim

  18. Likes Alysia, Jaha liked this post
  19. #10
    Join Date
    Jul 2019
    Location
    Washington, DC
    Posts
    12
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    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

  20. Likes Alysia, Jaha liked this post
Page 1 of 2 12 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •