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Thread: Hello! ~=]

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    Red face Hello! ~=]

    Hello everyone!

    Upon waiting for approval, I went through many, many, MANY posts. I feel as though I know some of you. You have no idea how amazing you all are. I'm glad I found a support group for Wegener's (and that one actually exsists!!).

    My name is Ashley, I'm 22 years old, from Toronto. My best friend got diagnosed with WG about 2 1/2 - 3 weeks ago, and started steroids + other meds a week and a half ago. This is all really scarey and confusing for us all, as we don't know what to expect. I've been spending lots of time online trying to gather up some information to read, and have been filtering out the garbage I find.

    I'm going to try and get him to join this site.

    Just wanted to say HI to you all, and that you'll be seeing (...well, reading lol) much more of myself here. ~=]

    Thanks again!

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    Sorry to hear about your friend, welcome to this group. They have alot of info that you will find very useful All the people here are great!

    Best wishs

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    Hi and welcome to the Forum.

    These are very early days for you and your friend, far too early to predict what is in store. I hope they had an early diagnosis (rare!) and have not suffered too much damage.

    It sounds as though you have already had a good look through the posts so will have picked up quite a good picture of Wegener's, but please feel free to tell the story and ask any questions you may still have.

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    Thank you for the warm welcome Gary & Jack!

    I'm going to tell you his story from what I know/remember.. maybe he'll correct me if he ever joins! lol
    It all started in April '09, from what I can remember. He had a stuffy nose. Figured it would go away after a few days.. Not so much.
    It stayed around for awhile. He would get headache too, but figured they were just headaches. We all get them! He'd have appointments with his family doctor, and she put him on some nasal spray and what not. Later, he went for a CT scan, because he though he had a brain tumor... the headaches got that bad. Everything was clear and fine, yet something was still clearly wrong.
    About 2 months ago, he woke up with SEVER pain in his knees. He couldn't walk that morning. His cousin took him to the hospital, and they said it's probably arthritis. He got sent home, and had an appointment with an arthritis specialist. His doctor also made an appointment with an allergiest (sorry, i don't know the terms for these doctors...!), they did an allergy test on him, and he was indeed allergic to Ragweed, cat/dogs and dustmites. We figured, "Yay! That's the cause of all these symptoms!" ...ha!
    His right eye then started to swell up, and again, he went to his doctor and she sent him to an optomitrist. They told him to take these eye drops three times a day, and come back in a week. His eye got better with the drops.. but it still wasn't making sense. Anywho, meanwhile, he was waiting for his appointment with a doctor (not sure which one though) at a Mount Sini Hospital in Toronto. That's when he was officially diagnosed with Wegener's. When he called to tell me, I didn't think anything much about it. I figured it was something small, they'd have him on antibiotics, and he'd be better.
    We got into a fight over stupidness not too long after, and didn't talk for almost two weeks. This past Friday, I sent him a text, asking him how he was.. because even though I was mad at him, I still wanted to know how he was. He said he was okay, and that the doctors put him on heavy steroids. I'm thinking to myself, "Steriods? What the heck? For what?", then he told me it was for the Wegener's. An hour later, I was with him, listening to everything that had happened... everything that I had missed. I was worried, ofcourse.. I thought I was cursed. [My boyfriend of 4 years passed away December 31st/07 from a heart attack caused by another rare disease; Pulmonary Hypertension] I couldn't understand why it was happening again, to another person I loved.
    Anyways, back to my friend...
    So, the weekend went by pretty normal. Saturday night he invited me over, and we watched a movie at his place with his cousin and sister. It was a late night, but it was fun. Then, Sunday evening, he sends me a text telling me he wasn't feeling well. I asked him what was wrong? He said the left side of him was hurting, and the back of his head too. He was starting to freak out. He gets worried REALLY easily. It's not good. So, I rushed to pick him up, and we went to the hospital. They did a million tests on him. Blood tests, ultrasounds on his heart, CT scan on his liver... it just kept going. They put him on an IV of saline, and he said it made him feel better. I guess the might have been a little dehydrated? They ended up keeping him (us) overnight, and had him hooked up to heart monitors. Wow.. we weren't able to get ANY sleep that night. Maybe 20 minutes the most. Everytime the heart monitor started to beep, we'd jump and look. It was crazy. His heart was going CRAZY. It would skyrocket to the 140s, then fall down to the 80s in like a minuet! It was scary.
    They let him out Monday afternoon, and said everything looked clear. Thank goodness!
    Now, I'm starting to think that I'm not cursed. Maybe G-d put me in his life to show him that he WILL get through this. I've been in a smilar situation before and I'm learning from the mistakes I had made in the past (eg. looking for a support group!).. maybe I'm a blessing in disguise?

    Anywho, he's going to New York today to see a Naturalist. Going to see what he has to say on this whole situation, and find out how he can get better without the meds. Anyone every try this? I'm really worried because from what I've been reading, you need a love/hate relationship with the steriods. It's not something you can stop.

    Regardless, him and his whole family are worried. I wanted to show him all the websites I found online about Wegener's today, but he just told me he's leaving. Spur of the moment thing, I guess. He'll be back Sunday. He has an appointment at Mount Sini Hospital, Monday afternoon.

    He's on (please excuse my spelling): Prednisone, Septra, Methotrexate and Fozavance. Can anyone tell me what these are for?

    Oh yes, he also told me he has Limited Wegener's. This mean they caught it early, right? Please correct me if I'm wrong.

    So, that's enough of me rambling.

    Hope all is well on each of your end.


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    It sounds like he had an early diagnosis and has so far avoided some of the more serious kidney and lung involvement. However, I must beg you to take extreme care with any "alternative" therapy. None has yet been found and the consequences of making a mistake can easily be fatal. This disease is not to be taken lightly!

    The drug regime you describe is fairly typical -

    Prednisone - anti inflamatory and immune suppressant
    Methotrexate - immune suppressant and chemo type drug
    Septra - antibiotic
    Fosavance - a drug to slow bone density loss caused by Pred.

    You can expect the mix to change as time goes by depending on how well he is doing.

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    hi ashley.it sounds like your friend is having a hard time accepting his situation.WG is a life changing disease as you will have read in other posts on here.as for the meds i'm afraid they are not going away anytime soon.they are what keep us all alive so please don't let him try substituting them for natural remedies.i'm sure when sangye reads your post she will go into more detail for you.hope to hear from you soon.
    john.

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    Trust me, I know how important these meds are. When I asked him what going away was going to accomplish, he said that he'll be cured. I told him it's not going to happen. There's nothing out there to cure this illness, and if there was, don't you think everyone would be doing it?
    I told him if he stops his meds, he'll end up blind, deaf, in pain, and potentially worse!! I kinda scared him a bit, but I hope he's opened his eyes, and realized that this isn't something that should be taken lightly.

    Haha, I'm glued this website now! It gives me so much peace of mind, you have no idea. Thank you all, again, so much!!


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    As I'm sure you know, the danger is that permanent damage can occur before symptoms show. Renal failure nearly killed me in the early days without anything much in the way of additional symptoms.

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    what is renal failure? sorry.. still trying to figure things out without having medical terminology cloud my brain lol. thanks!

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    Renal failure = kidney failure

    If you are lucky, you can regain enough function to get by. In my case it was beyond recovery and resulted in me going onto dialysis and eventually getting a transplant
    That was my life saver, because I was going down hill fast!

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