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Thread: New Member - two decades of patient experience

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    Default New Member - two decades of patient experience

    Hello Everyone:

    Both my son and myself have had Wegenerís/PAN small to medium vessel disease for over 20 years. We have both relapsed numerous times although successfully treated with whatever the drug of choice was at the time. From Cyclophosphamide & Prednisone, through CellCept/Imuran, more Prednisone, and in more recent years - Rituxan/Rituximab (which worked best & with no side effects).

    My last Rituxan treatments were four weeks of infusions at end of 2017 and with the fourth week in January of 2018. At that time I had experienced Vasculitis of the brain and severe skin ulcers. Now I appear to have relapsed again with the onset of a peripheral and now more generalized polyneuropathy at end of October.

    This is has put me in bed for going on five weeks with worsening neuropathy symptoms including increasing (systolic) blood pressure, & some signs of brain and cranial nerve involvement. I am now living in Nashville TN, having moved here from the Los Angeles area 5 years ago. Recognition of Vasculitis relapse by our Nashville doctors has been disappointing at best although we have tried.

    Due to this our family has been forced to make multiple returns to Los Angeles for both my son and myself. Our doctors there have written multiple long distance prescriptions for both of us to receive Rituxan infusions in Nashville. Although far from ideal this situation illustrates how difficult Wegenerís can be to manage.

    As a longtime patient and mother of a patient please let me know if I may be of help.

    Recently one of my physicians shared that current protocol was to give Rituxan every four months to prevent relapse. Had anyone else been told this?

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    Default Re: New Member - two decades of patient experience

    Quote Originally Posted by [email protected] View Post
    Hello Everyone:

    Both my son and myself have had Wegenerís/PAN small to medium vessel disease for over 20 years. We have both relapsed numerous times although successfully treated with whatever the drug of choice was at the time. From Cyclophosphamide & Prednisone, through CellCept/Imuran, more Prednisone, and in more recent years - Rituxan/Rituximab (which worked best & with no side effects).

    My last Rituxan treatments were four weeks of infusions at end of 2017 and with the fourth week in January of 2018. At that time I had experienced Vasculitis of the brain and severe skin ulcers. Now I appear to have relapsed again with the onset of a peripheral and now more generalized polyneuropathy at end of October.

    This is has put me in bed for going on five weeks with worsening neuropathy symptoms including increasing (systolic) blood pressure, & some signs of brain and cranial nerve involvement. I am now living in Nashville TN, having moved here from the Los Angeles area 5 years ago. Recognition of Vasculitis relapse by our Nashville doctors has been disappointing at best although we have tried.

    Due to this our family has been forced to make multiple returns to Los Angeles for both my son and myself. Our doctors there have written multiple long distance prescriptions for both of us to receive Rituxan infusions in Nashville. Although far from ideal this situation illustrates how difficult Wegenerís can be to manage.

    As a longtime patient and mother of a patient please let me know if I may be of help.

    Recently one of my physicians shared that current protocol was to give Rituxan every four months to prevent relapse. Had anyone else been told this?




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    Default Re: New Member - two decades of patient experience

    Sorry about that-not sure what happened with my phone!
    Hello Kwnorton000! You and your son have quite the history! I know there is a debate on Facebook about vasculitis being hereditary. No one else in my family has Wegeners, however there is autoimmune issues in almost every member of my mothers family. Of course I had to be unique!
    Iím disappointed in the Drs in Tennessee. I know vasculitis is rare but more and more people are being diagnosed with it so itís no longer like seeing a zebra instead of a horse. Have you thought about getting treatment closet like in St Louis? I guess if you have to travel-you might as well see the Drs you know, have a relationship with and trust.
    It sounds like you are feeling pretty crappy. I really hope you start feeling better soon. When you really feel crappy you just wish for the days you dealt with the exhaustion, fatigue and everydayaches and pains hu? I will be thinking of you & sending positive vibes your way!
    Natty


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    Default Re: New Member - two decades of patient experience

    Thank you for your response. Yup I’m pretty miserable- sufficiently that I’ve booked a trip to Los Angeles for next Monday. It is a big deal for me to expect that my Santa Monica Rheumatologist will write a prescription for Rituxan infusions to be given in Nashville but he has done so before and he seems to understand the exigencies of being a patient with this disease. My husband is a very good patient advocate and goes the distance to help make this easier. I am very fortunate and may indeed search for a more strategically located physician in regards to Nashville travel. LA is a difficult and expensive destination for anyone, let alone someone in the midst of a flare. Wish me luck!

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    Default Re: New Member - two decades of patient experience

    Welcome to the board. Your experience will be valuable addition to the already impressive group of "experts" this board has on our condition. The knowledge base around here blows me away, as well as the desire to help others.


    I use my local doctors and I am very happy with their "by the book" care (their business office just got me the $5 Rtx infusion card, simply incredible). However, I am a "trust but verify" kind of guy. As such, I went to the Cleveland Clinic back in August to see Dr. Alexandra Villa-Forte. I also contact her via MyChart messages when I have concerns. Many of the doctors at CC wrote the book on GPA. If you have to travel, it may be cheaper to go to Cleveland (esp. if you are getting care for 2 people).


    The fact that you and your son have the disease certainly makes the whole "environmental factors" issue come to mind. Do you have anything suspicious that makes you believe you and your son were exposed to something that led to your illness? I only ask because I want to protect my own family.


    Best of luck to you resolving your current condition.

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    Default Re: New Member - two decades of patient experience

    Welcome to the forum, and I don't have much to add since I've been living with a less severe case of GPA (or Wegs, as some of us like to call it) , don't take Rituxan, and don't have a family member who has it. I have to wonder, though, if some of my family could be predisposed to it under some circumstances. My dad died right around the time I was diagnosed in 2011, and it was assumed to be just old age (83), he had suffered a stroke a few years earlier and seemed to decline in every way after that. But his wife, my stepmother, said he had lots of problems with mucus, which she described as thick and "ropy", which reminds me of what was going on with my sinuses for a couple of years before my dx. I know he had a deviated septum, as does probably my whole family. But if there's any chance he had GPA, I don't think anyone would have even pursued it because he was obviously on his way out, suffering mental as well as physical decline and all his organs were shutting down. Well, it's all speculation. But it's indeed troubling and unfortunate that both you and your son have it and that you have to go to such lengths to get the treatment you need. I have learned on this forum that no two cases of WG/GPA are exactly alike and am curious how different or similar you and your son's involvement might be. Anyway, you have come to the right place for friendship, information, and support from people who've been there and who care, which can make a big difference in dealing with this. Be sure to keep us posted on how things are going!



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    Anne, dx'ed April 2011

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    Default Re: New Member - two decades of patient experience

    Thank you for your welcome post. It is wonderful to have this kind of intelligent support from fellow informed patients. As far as being an “expert” is concerned, I’m just an experienced patient, caregiver, patient advocate, writer & researcher. I normally arrive at my physician’s appointments with a stack of solid research papers highlighted with markers. Not all doctors can deal with this so our family votes (politely) with their feet. Yes, we could travel to the Cleveland Clinic, however we may or may not receive better care there & our care in/from Los Angeles although our care there has been excellent if somewhat interrupted. I remain open to suggestions for great physicians & care centers however. There is nothing in Nashville so we may well be forced to move again.

    To answer your question regarding toxic exposure involving my Son and I, as far as I know there has been none. We are both seeing a Geneticist at present & will see what they find. There are documented genetic issues with this disease although I can’t recall the specifics now. Will find the appropriate paper & post later.

    Times have changed! We began being treated for CIDP (misdiagnosed) & we’re subsequently realized to have systemic Necrotizing vasculitis (Granulomatosis with MPA = Wegener’s granulomatosis). Early we were treated in hospital with IV Cyclophosphamide. Extremely toxic and today unnecessary. Eventually we graduated to the “less toxic” immunosuppressive drugs, although our “general health” - quite important I believe - always suffered.

    Today we have both been treated with 6 Rituxan induction infusions- until now not backed up by repeat preventative infusions every 4 months to prevent these relapses. Thanks be to the studies which have found this method to work!

    My my heart goes out to all of you living with this disease it’s far from easy and although it is possible to rise above it physically, psychologically, and spiritually it is exceedingly difficult.

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    Default Re: New Member - two decades of patient experience

    Welcome to the forum, kwnorton. How can we call you ?
    Sorry that you and your son both suffer from WG.
    I get rtx every 6 months since 2013. I know some weggies who get it every 4 months. Since your last rtx was about a year ago, no wonder that you flare right now. I hope you can find a decent dr. as soon as possible to prescribe rtx for you.
    Tagging @newnormaljames - I think he lives in your area.
    Tagging @crowneagle who also had brain and skin involvements and is doing wonderful job of recovery.
    Please update us. 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.

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    Default Re: New Member - two decades of patient experience

    Quote Originally Posted by [email protected] View Post
    Hello Everyone:


    Recently one of my physicians shared that current protocol was to give Rituxan every four months to prevent relapse. Had anyone else been told this?
    Frequency varies as there is much individual variation with GPA in most aspects. The common denominator is the difficulty finding good care and getting it correctly diagnosed and treated in a timely manner. Some times you have to audition a number of physicians to find a few good ones that can treat us appropriately. The good ones seem to recognize that our body's symptoms are often and usually the best indicator of what is happening with our GPA! And it is hard to often recognize since the symptoms can morph into something new and not repeat the same pattern that happened before. And like our dear departed guru Jack often said "Just because you have Wegener's, doesn't mean you can't have some else too".

    Best wishes in your quest to find good care!
    Last edited by drz; 12-04-2018 at 09:56 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: New Member - two decades of patient experience

    Quote Originally Posted by drz View Post
    Frequency varies as there is much individual variation with GPA in most aspects. The common denominator is the difficulty finding good care and getting it correctly diagnosed and treated in a timely manner. Some times you have to audition a number of physicians to find a few good ones that can treat us appropriately. The good ones seem to recognize that our body's symptoms are often and usually the best indicator of what is happening with our GPA! And it is hard to often recognize since the symptoms can morph into something new and not repeat the same pattern that happened before. And like our dear departed guru Jack often said "Just because you have Wegener's, doesn't mean you can't have some else too".

    Best wishes in your quest to find good care!
    You are right, of course - frequency of Rituxan infusions does vary with individual variation. Both my Son and myself have been extremely fortunate to find early diagnosis (20+ years ago = the “dark ages”) and consistent treatment that has kept us alive anyway. The fact that this care has always been found in Los Angeles (Cedars Sinai, USC, UCLA) so far is simply our experience. We’ve managed to find physicians who’ve recognized and treated our symptoms as what has been happening with our Vasculitis- until Nashville. Certainly true that we can have Vasculitis and develop other conditions as well - we’re human! Many of us must fly to distant caregivers to find consistent medical management, so we’re not alone, although it doesn’t always work well, especially for medical emergencies which could represent a flare.
    Since we’ve had the same Santa Monica, California Rheumatologist for many years who has so far managed our care successfully guess we’ll work out all of this with his guidance.

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