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  1. #1
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    Hello everyone I have joined this to try get info to help my nephew who has this disease mostly in his kidneys but we are told its hit the heart and lungs. Apparently we are told he is in the rare end of the disease being it started when he was only 25years old and its usually in older people around 45 and up, is this correct?. He is now 31.He was hospitalised back when he was 25 after weeks and weeks of different opinions as to what was wrong, 1 idiot dr even put his arm in a sling and said it had been injured or something also put him on anti inflamitrys thinking the soccer he played was making his knees and ankles ache and swell. On the night he got admitted to hospital his urine was like cocacola and we were told he was in renal failure. Usually they wouldve put him straight on dyalisis but the specialist wanted to try something first, so he was pumped with pred and cyclo and other things and he improoved day by day. Mind you he was super fit young man playing soccer and working out never smoked etc. He went into remission for about a year then it was back and he was on a different medication which put him in remission for 3 yrs, he is now back on cyclo and pred and whatever, at last count he said he was taking 11000mgs a week of everything. his creatin on admission was 160, after 1 month it was 156 now last week its 134 so a long long way to get it back to 5.6, also his protein was extreme, dont remeber levels but they are coming down. Last visit the doctor mentioned possibly trialling 1 other very dangerous drug if this cyclo dont work before possible dyalsis. Now, heres a question and excuse all the spelling errors in this post. Is he a candidate for a kidney transplant? would a new kidney put a stop to what is going on right now? at no point has the dr mention transplant? why? his father and and other blood related and non blood related with same blood group have offered to give up a kidney but so far not told the dr this. I cant see any info other then before a transplant the blood needs cleaning with dyalsis. Is a transplant a last resort and being he is so young they dont talk about it? or is the fact theres a huge waiting list and possibly noone in family will match?lastly is there any support groups in the South NSW Australia area, mostly for me and his mother to go and get help with lots of questions, oh and has anyone had success with certain diets, his dr tells him food has nothing to do with this but I am a big believer of we are what we eat.Sorry for the huge post thanks

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    Betska, I tried to answer some of your questions in your other thread. First, though your creatinine numbers make no sense to me (normal is less than 1.2; 2 or higher is very troubling; and past 4 puts one into the dialysis candidate territory), it is clear that your nephew had serious kidney involvement. Oh, and I neglected to say elsewhere that WG also does not care how well you have taken care of your body. On this forum, we have mountain climbers, skiers, gym jockeys, and nutrition freaks. In that regard: Yes, we are what we eat--but not only what we eat. We are the sum of all our life-experiences, including our history of infections, our environment, and our lucky (or unlucky) breaks. So good nutrition is good for you and will help keep you keep in the right frame of mind, but listen to the doctors: please, please, please do not believe that any specific diet can ever be a magic pill.

    Again, regarding transplants: Forget it. This is a truly desperation move, and, in any case, not likely to be a long-term solution (besides the fear of rejection, transplanted organs often themselves become diseased. A better solution, but not one available in 2012, is when technology allows re-growth of the patient's own kidneys. Not so easy, though. In the meantime, dialysis is yucky, but pretty successful.

    Al

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    Quote Originally Posted by Al View Post
    Betska, I tried to answer some of your questions in your other thread. First, though your creatinine numbers make no sense to me (normal is less than 1.2; 2 or higher is very troubling; and past 4 puts one into the dialysis candidate territory), Al
    Creatinine levels in Australia are measured differently than in the US, I guess
    The normal levels for creatinine are between 40-85 umol/L, so 134 is still very high.

    Welcome to the forum Betska. I hope you can find all of your answers, from some very knowledgeable people, for your nephew.

    I'm not sure about a group for NSW. I'm pretty sure that Melb used to have one but closed due to lack of support....or lack of members.

    Take care
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Quote Originally Posted by Al View Post
    Betska, I tried to answer some of your questions in your other thread. First, though your creatinine numbers make no sense to me (normal is less than 1.2; 2 or higher is very troubling; and past 4 puts one into the dialysis candidate territory), it is clear that your nephew had serious kidney involvement. Oh, and I neglected to say elsewhere that WG also does not care how well you have taken care of your body. On this forum, we have mountain climbers, skiers, gym jockeys, and nutrition freaks. In that regard: Yes, we are what we eat--but not only what we eat. We are the sum of all our life-experiences, including our history of infections, our environment, and our lucky (or unlucky) breaks. So good nutrition is good for you and will help keep you keep in the right frame of mind, but listen to the doctors: please, please, please do not believe that any specific diet can ever be a magic pill.

    Again, regarding transplants: Forget it. This is a truly desperation move, and, in any case, not likely to be a long-term solution (besides the fear of rejection, transplanted organs often themselves become diseased. A better solution, but not one available in 2012, is when technology allows re-growth of the patient's own kidneys. Not so easy, though. In the meantime, dialysis is yucky, but pretty successful.

    Al
    sorry I cant see how to just add a reply comment without linking the old one
    Anyway I woke today seeing all these replies here and info my sister(his mum) and I have been wanting answered. In regards to the diet or the fact he was a very fit man before this hit, I meant it was lucky he was in good shape when this attacked his system as I can imagine if it hit him in poor health already he may not have got through it. In regards to diet, I know foods wont cure him but do feel he needs a healthy as possible diet and should really avoid fast foods, processed foods etc but this is for everyone in general. I found sites with lists of the no no foods for him and the good, basically all fresh fruit and veg is a big plus nothing new to anyone I am sure lol As for his test results all I know is my sister said it was 160 and its very slow coming down, also protein was 1000, initially when he first got it it was not as bad as this time round, so this time she trippled all doses of the cyclo and pred,he has to have tests weekly to make sure his heart and lungs are standing up to this current treatment, I cant remeber the name of this other treatment she mentioned but she said he would be like a bubble boy if its used as it wipes the immune system out, it looks like the bad outways the good if/when he needs that treatment, she is trying to keep him off dyalsis long as possible, and yes I seen they have grown kidneys from stem cells the size of a embryio kidney and predict in 10yrs or less they will be able to grow your own kidneys, but I thought if this WG is in his sytem wouldnt it simply attack the new organ anyway? Again thanks so much its a relief to talk with people who actually know and have gone through this rather then researching stuff and not really understanding things. Oh and would just a blood test show if you have this WG? before the aches and swelling or other things hit, I feel his sister should get tested and make sure her ongoing sinus infections are just sinus.

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    Hi, Betska,

    Others can answer your questions better than I, but I just wanted to help welcome you here. You will learn a whole lot on this site by reading the archives as well as the new threads. Your nephew's condition does sound pretty scary, but if he is making progress with treatment, that will probably continue. Some of us don't have kidney or heart involvement but mainly sinus or lung involvement or both, and joint pain, among other things. And yes, most of us were probably diagnosed at an older age than your nephew, but there have also been a fair number diagnosed at his age or younger. My best wishes go out to him for a recovery and return to his active life, and to you for being so generous as to help him understand this disease.
    Anne, dx'ed April 2011

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    By all means, Betska, eat well. And bey that, I don't mean just eat good stuff. For humans, meals mean far more than ingesting food. They are an important part of being social beings--which means that they are important parts of being humans.

    Yes, if WG is "in the system", it is likely that any transplanted organ is susceptible as well. Still, it is a good idea to defer dialysis as long as possible. Dialysis comes with its own set of problems, and, according to reports (I have deferred it myself up to this point), quite boring and stupid.

    Finally (for now), there is a correlation between, genetics and WG. But this correlation is very weak. Essentially, the fact that a person has WG means nothing about his or her relative's prospects.

    Al

    A blood test will tell you the presence of ANCA, the antibodies involves with WG, but will not, by itself, confirm the disease. In part, this is because the disease is, in 10-20 percent of the population of sufferers, ANCA-negative. A biopsy and symptomatic description, also also needed.

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    Welcome, Betska! Annekat is correct in stating you will find a great source of information and unconditional support from the folks in the forum. Like your nephew, my initial involvement was my kidneys. Next was the lungs. So far, I've only had minimal upper respiratory involvement. I was able to get a fairly quick diagnosis and put on prednisone and Rituxan treatments to save at least 50% of one kidney, stop my lung bleeding, and begin the process to arrest WG. I'm approaching one year since diagnosis and continue to be amazed at how my life has changed. At 56, it has caused me to re-evaluate everything! Al mentioned the varying ages of those on our forum -- this also includes varying physical characteristics, genders, lifestyles, etc. WG attacks randomly. The key seems to be prompt diagnosis & treatment. Information (knowing the disease) is crucial! Best wishes to your nephew and family. We'll hope for good news in the future!

    KB
    KB -- "The good life is inspired by love and guided by knowledge". Bertrand Russell

    Dx in September, 2011. Major involvement: kidneys and lungs. Medical implications: fungal pneumonia, drug-induced hepatitis, allergy to fungal meds, ear infections, sinusitis, gall bladder removal, vitreal detachment, and eye cellulitis. Medial meniscus removal (unrelated to WG). Medications: Rtx, Pred 5.0, Lisinopril, Chlorthalidone, Levothyroxin, Omeprazole.

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    Thanks all for any info you can share. I seen my nephew yesterday and tried convincing him to join this site and talk with people who really truely know and can relate but at this stage he rather not, hes sick of being sick sick of the tablets, sick of the adverse reactions and tests, basically had enough right now. I feel being in a support group of some sort is essential to help but for now he isnt wanting to join. I have menieres disease myself and joined a support forum and found it somewhat helpful but kinda depressing at times, no cure, no real new treatments that really help and the way it will get worse no matter what just not knowing how long, but there also was a sense of relief I felt not being alone in my fears and worries and talking to people who had it and really did understand was great. Oh well one day he might join. Anyway time to cook take care all

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    Quote Originally Posted by Betska View Post
    Thanks all for any info you can share. I seen my nephew yesterday and tried convincing him to join this site and talk with people who really truely know and can relate but at this stage he rather not, hes sick of being sick sick of the tablets, sick of the adverse reactions and tests, basically had enough right now. I feel being in a support group of some sort is essential to help but for now he isnt wanting to join. I have menieres disease myself and joined a support forum and found it somewhat helpful but kinda depressing at times, no cure, no real new treatments that really help and the way it will get worse no matter what just not knowing how long, but there also was a sense of relief I felt not being alone in my fears and worries and talking to people who had it and really did understand was great. Oh well one day he might join. Anyway time to cook take care all
    I can understand why he might not want to join the forum at this point, after having Wegs for several years and feeling like he's had enough of thinking about it and talking about it. For many of us, including me, the forum was a big help in the beginning stages, right after diagnosis, when we were the most confused and scared. We still get a lot out of it, as we know people on here, and Wegs is constantly changing for many of us. I will still have many questions as I enter remission and taper the pred and other drugs. In any case, there have been several on the forum who don't have Wegs but are writing on behalf of another person. So continue to stay in touch, ask questions, and share how things are going for you and your nephew. If he ever decides to join, we will welcome him.
    Anne, dx'ed April 2011

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    Hi Betska, welcome to the group. Thanks for joining on behalf of your nephew.

    I'm wondering if the other drug his doctor is considering is rituximab/ rituxan? I don't know why they haven't tried it yet if ctx hasn't worked. I can't think of a drug that would require him to be a "bubble boy" with no immune system. Is he seeing a Wegs specialist and not just a regular rheumatologist?

    We have a few members who have had successful kidney transplants. One of our members who passed last year had a transplant for about 20 years and it did just fine. I imagine your nephew's doctors are not talking about a transplant right now because his disease is not well-controlled. Unless it is, the Wegs would likely attack the new kidney.

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