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Thread: I love someone with Wegeners

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    Default I love someone with Wegeners

    Hello Everyone, My husband was diagnosed in September 2016 and it has been a bumpy ride (to say the least). He has many other health issues and, of course, some could be related to Wegs or not. You never really know. We do know that he had suffered with sinus and lung problems for years. Always being diagnosed with colds, bronchitis, sinusitis, etc. Finally in 2016, his GP did an ANCA Titres test and we started on this journey. His kidney function was so low that they had him in the hospital within days to do the kidney biopsy for confirmation. They had to work fast to keep him from going into kidney failure. My husband's case is further complicated by the fact that he has a mechanical heart valve and has to be on warfarin. So, not only are biopsies made more difficult, but every medication he is on affects his INR. His initial treatment choice was the combo of Cyclophosphamide & Prednisone. He did good during this phase. Of course, he did have the prednisone side effects, but tolerated the Cyclo well. Kidneys responded and they decided it was time to switch to Azathioprine for maintenance phase. This lead us to two life threatening stays in the hospital where no one could figure out what was making him so sick. They even brought in an Infectious Disease Specialist. Long story short, the Azathioprine was toxic to him for whatever reason. Can't take Aza, so now we go the Methotrexate. His kidneys still respond well to this treatment, but he felt horrible. No quality of life on this med for him. We are now being seen by a Rheumatologist. Rheumatologist switches him to Celecept and he seems to be doing better. That is until he develops Shingles because his immune system in compromised! It definitely feels like he can't catch a break. Now we are pretty sure he is experiencing a flare even though he is still on meds.
    I hurt so bad for him and try to do anything I can to help. I was doing some internet research last night and came across this support group. I am so happy I did. Just the little bit I have read has helped! While I was on this site last night, I came across the Weggie Map! I pulled it up and just sat there with tears running down my face (just like I have now). Those Pins! Each representing someone that knows what we are facing. Suddenly I didn't feel so alone. He was asleep last night when I found you guys. So, first thing this morning, I told him all about you. He sat there with tears in his eyes. Tonight, when I get home from work, I am going to help him sign up also.
    So, if you are spouse or family member of a Weg's, I would love to connect with you. Maybe learn and share together on how to help the one we love with Weg's!
    Thank you so much & Prayers to All
    Lynette

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    Default Re: I love someone with Wegeners

    Welcome Lynette (and husband).
    I also have problems with getting my INR stable. So many biopsies and blood tests where I have to stop taking warfarin, then changes in medication that effect wafarin's potency.
    I'm pleased to hear that he's been taken of Methotrexate. This is toxic to kidneys and he's had kidney involvement. It's a shame Aza wasn't suitable for him. I did well on Aza for about 20 years.

    You are certainly not alone.
    This is a very friendly forum where you can ask anything without being told to go search through hundreds of posts to find an answer to your question.
    Diagnosed April 1995

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    Default Re: I love someone with Wegeners

    Thank you so much for the welcome! I already appreciate what I have learned from the few posts I have read. I was wondering if you are in remission and, if so, how long? Right now it feels like we are never going to see remission. Don’t mean to be negative. We are just having a difficult time right now.

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    Default Re: I love someone with Wegeners

    Quote Originally Posted by lbartley View Post
    Hello Everyone, My husband was diagnosed in September 2016 and it has been a bumpy ride (to say the least). He has many other health issues and, of course, some could be related to Wegs or not. You never really know. We do know that he had suffered with sinus and lung problems for years. Always being diagnosed with colds, bronchitis, sinusitis, etc. Finally in 2016, his GP did an ANCA Titres test and we started on this journey. His kidney function was so low that they had him in the hospital within days to do the kidney biopsy for confirmation. They had to work fast to keep him from going into kidney failure. My husband's case is further complicated by the fact that he has a mechanical heart valve and has to be on warfarin. So, not only are biopsies made more difficult, but every medication he is on affects his INR. His initial treatment choice was the combo of Cyclophosphamide & Prednisone. He did good during this phase. Of course, he did have the prednisone side effects, but tolerated the Cyclo well. Kidneys responded and they decided it was time to switch to Azathioprine for maintenance phase. This lead us to two life threatening stays in the hospital where no one could figure out what was making him so sick. They even brought in an Infectious Disease Specialist. Long story short, the Azathioprine was toxic to him for whatever reason. Can't take Aza, so now we go the Methotrexate. His kidneys still respond well to this treatment, but he felt horrible. No quality of life on this med for him. We are now being seen by a Rheumatologist. Rheumatologist switches him to Celecept and he seems to be doing better. That is until he develops Shingles because his immune system in compromised! It definitely feels like he can't catch a break. Now we are pretty sure he is experiencing a flare even though he is still on meds.
    I hurt so bad for him and try to do anything I can to help. I was doing some internet research last night and came across this support group. I am so happy I did. Just the little bit I have read has helped! While I was on this site last night, I came across the Weggie Map! I pulled it up and just sat there with tears running down my face (just like I have now). Those Pins! Each representing someone that knows what we are facing. Suddenly I didn't feel so alone. He was asleep last night when I found you guys. So, first thing this morning, I told him all about you. He sat there with tears in his eyes. Tonight, when I get home from work, I am going to help him sign up also.
    So, if you are spouse or family member of a Weg's, I would love to connect with you. Maybe learn and share together on how to help the one we love with Weg's!
    Thank you so much & Prayers to All
    Lynette
    Hi Lynette,
    I am sorry your husband has had such a horrible time! It can be very overwhelming esp when nothing seems to be going right. But luckily you are not alone! It seems to go in waves. Hopefully, your husband will be on the upswing & feeling better soon.
    Natrice


    Sent from my iPhone using Tapatalk

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    Default Re: I love someone with Wegeners

    Quote Originally Posted by lbartley View Post
    Thank you so much for the welcome! I already appreciate what I have learned from the few posts I have read. I was wondering if you are in remission and, if so, how long? Right now it feels like we are never going to see remission. Don’t mean to be negative. We are just having a difficult time right now.
    Personally, I would say that I'm currently in remission. But that does not mean to say I have my full health. Since I was diagnosed over 20 years ago I've always had symptoms such as fatigue and sinus problems even during remission periods. There's also permanent damage to my ears and kidneys.
    As for how long I've been in remission -
    After first diagnosed in 1995 I achieved remission towards the end of 1995. Around 2 years later I managed to achieve "drug free" remission, but relapse within a couple of weeks.
    I won't bore you with all the dates but since I relapsed around 1997, it's been a constant battle of achieving remission and relapsing when reducing treatment.
    The positive news is that, every period of remission has been longer. I managed about 8 years of remission before my last relapse. The last treatment I had for Wegener's was Rituximab which my last dose was 15 months ago.

    It's very hard for you or your dr to say that you are in remission or not. Many of us "smoulder", but some people who think they are "smouldering" may actually be in remission, but have symptoms that never disappear.
    Diagnosed April 1995

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    Default Re: I love someone with Wegeners

    Hi Lynette, welcome. I am the mother to a young woman who has Wegener's (she was diagnosed 5 years ago at age 14.) I remember where I was the first time I read the forum after her diagnosis. After I got my feet under me, I have tried to be a light for others like the forum members have been for me. I have found the search engine to be extremely useful, and recommend it to other parents of pediatric-onset WG; I know you will find ways to both use the forum and then also be helpful to others, in time. Meanwhile please be gentle with yourself. Caregivers and support personnel can really have a tough time with it. I know at some point I needed to limit the hours I was on the forum or in FB WG groups because I was having anxiety and depression take hold of me. I needed balance. (Along with sleep and exercise and time with friends etc etc etc!) hugs to you

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    Default Re: I love someone with Wegeners

    Hi Lynette,

    Welcome to the forum! My wife found this forum soon after I was diagnosed almost a year ago. The forum has been extremely informative in my search for answers and understanding. Folks have taken time to answer my questions when I failed to find with the search. I am doing so well compared to last year that I am afraid I sometimes take it for granted. I was in so much pain, I didnít know how I could go on. Now I see stories here of how much damage could have been had it not been so aggressive and therefore diagnosed sooner. I feel unlucky to have GPA and fortunate at the same time.

    Now that you have the diagnosis, it can be effectively treated. Once on the mend, the trick is to live with a new appreciation while paying attention to symptoms without becoming paranoid. Iíll let yíall know when I figure that out. Iím still relatively new to this.

    All that to say as hard as it is now, there is good reason evidenced by this forum to believe life will be good once again.

    Keith



    Sent from my iPhone using Tapatalk

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    Default Re: I love someone with Wegeners

    Welcome to the forum, Lynette and husband. I was also VERY excited when I first found the forum. No more being so lonely, I am not the only weggie on earth.
    Flares can apear with or without meds. But the risk is less with meds and when the meds are stronger. Mtx, aza and cellcept are "mild" - only maintenance meds. Cyclo and rituximab are more powerful to treat flares. Each one reacts differently. I couldnt bear aza, it made me sick (crazy vommiting and diarrhea) and mtx didnt work for me. Rituximab works like a miracle for me. It stopped my blooddy nose after years of bleedings and crusting. It brought me to remission although for a limited time. After all it keeps my wg from being too wild.
    Sending prayers to both of you. Take care.
    Last edited by Alysia; 05-09-2018 at 12:30 AM.
    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: I love someone with Wegeners

    Quote Originally Posted by lbartley View Post
    Hello Everyone, My husband was diagnosed in September 2016 and it has been a bumpy ride (to say the least). He has many other health issues and, of course, some could be related to Wegs or not. You never really know. We do know that he had suffered with sinus and lung problems for years. Always being diagnosed with colds, bronchitis, sinusitis, etc. Finally in 2016, his GP did an ANCA Titres test and we started on this journey. His kidney function was so low that they had him in the hospital within days to do the kidney biopsy for confirmation. They had to work fast to keep him from going into kidney failure. My husband's case is further complicated by the fact that he has a mechanical heart valve and has to be on warfarin. So, not only are biopsies made more difficult, but every medication he is on affects his INR. His initial treatment choice was the combo of Cyclophosphamide & Prednisone. He did good during this phase. Of course, he did have the prednisone side effects, but tolerated the Cyclo well. Kidneys responded and they decided it was time to switch to Azathioprine for maintenance phase. This lead us to two life threatening stays in the hospital where no one could figure out what was making him so sick. They even brought in an Infectious Disease Specialist. Long story short, the Azathioprine was toxic to him for whatever reason. Can't take Aza, so now we go the Methotrexate. His kidneys still respond well to this treatment, but he felt horrible. No quality of life on this med for him. We are now being seen by a Rheumatologist. Rheumatologist switches him to Celecept and he seems to be doing better. That is until he develops Shingles because his immune system in compromised! It definitely feels like he can't catch a break. Now we are pretty sure he is experiencing a flare even though he is still on meds.
    I hurt so bad for him and try to do anything I can to help. I was doing some internet research last night and came across this support group. I am so happy I did. Just the little bit I have read has helped! While I was on this site last night, I came across the Weggie Map! I pulled it up and just sat there with tears running down my face (just like I have now). Those Pins! Each representing someone that knows what we are facing. Suddenly I didn't feel so alone. He was asleep last night when I found you guys. So, first thing this morning, I told him all about you. He sat there with tears in his eyes. Tonight, when I get home from work, I am going to help him sign up also.
    So, if you are spouse or family member of a Weg's, I would love to connect with you. Maybe learn and share together on how to help the one we love with Weg's!
    Thank you so much & Prayers to All
    Lynette
    Hi

    And a very big welcome, it is a revelation just to read some of the stories and even better therapy/help for me to post about it, as it helps me come to terms with being a Weggie and all the issues that go with it.

    If I can help in any way please just shout, selfish but I find helping people takes my mind off my own troubles.

    Ben x

    Sent from my SM-G930F using Tapatalk
    Ben


    Diagnosed in 2013


    Never, never, never give up! (Winston Churchill)

    What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)

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    Default Re: I love someone with Wegeners

    Dear Lynette and Husband, I am crying as I read your post.....Your story is a hard one to read, but also your love for your husband is beautiful. I agree with all the posts you have received from the people here. They are fantastic! I have learned so much from them, and they are extremely patient and kind. There is always someone here for you. I know how difficult it is for a person to HAVE wegeners, but what the spouse goes through is just as difficult...if not harder. Give yourself as much TLC as you give your husband. Don't feel guilty for feeling inadequate, because that comes with a disease like this, sometimes its just one day at a time. I am sure you already know this, but your support for your husband and just still loving him and letting him know that, is the best thing you can do. Many spouses cannot handle the disease, so I am extremely happy you found this forum! I know it will help you with any and every issue you both will be dealing with...and have already delt with. Sending you positive thoughts and prayers. Blessings, Lisa
    Life is a Gift~ Lilly

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