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Thread: Hello! ~=]

  1. #11
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    how long has everyone had Wegener's for?

    thank you for all your help Jack!

  2. #12
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    Hi Ashley

    I've been diagnosed for 10 months now and only felt ill just a few short weeks beforehand.

    I got to stage 3 kidney failure (scale of 1-5, you usually need dialysis at the top end of 3 into 4, 5 usually means you end up like Jack and need a transplant) but my kidneys have managed to almost completely heal. My kidney function at least is totally back to normal.

    I was lucky I got a diagnosis within 2 days and immediate steps were taken to preserve my kidneys, so the damaged tissue didn't have a chance to die and turn to scar tissue so it was able to heal.

    If your friend has limited Wegener's then it hopefully won't reach his lungs or kidneys - make sure he looks out for things like blood in his urine and a nasty cough (I coughed up blood which is what put me in the emergency room).

    I really hope he faces up to WG and decides to fight the disease instead of the meds needed to treat the disease. He needs to fight but is currently fighting the wrong thing.

  3. #13
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    Quote Originally Posted by AshleySparklez View Post
    how long has everyone had Wegener's for?
    Nearly 25 years.

  4. #14
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    Hi Ashley,
    Welcome to the group! Your friend probably doesn't feel very lucky right now, but all things considered, he's incredibly lucky to have begun treatment with "just" those symptoms. Unfortunately for him, it might make him less likely to take it seriously and more likely to think he can substitute natural remedies for the drugs.

    If you look up a thread called something like "Natural Remedies" that was started by Georgia, you'll find info on how dangerous it is to do that. He might want to go away (who wouldn't??), but he could wind up really "going away" if he drops the drugs for natural remedies.

    The term "limited Wegener's" can be a bit misleading. It makes it sound like the Wegs can't affect other areas. Really, it just means that it isn't affecting other areas. So it's the same disease, whether one area or many areas are involved. Someone with widespread involvement can be treated and only have minimal or no involvement from then on. Or the reverse-- someone with localized involvement can suddenly develop more widespread problems. This is why he can't be complacent.

    Another important thing to mention is that the more he messes with the treatment protocol, the likelier he is to have to start all over again. Just gotta get through it.

    I was diagnosed 3 yrs ago after a year of excruciating joint pain. The last 3 months pre-diagnosis, my lungs began to bleed silently (ie, I wasn't coughing up blood). I was nearly dead by the time we diagnosed it. I only have lung and skin involvement. The extent of involvement is not a clear indicator of how it will impact one's life. I've had less Wegs involvement than many others here, but lots of bizarre complications, so I haven't been able to work or do much of anything in over 3 yrs.
    Last edited by Sangye; 08-27-2009 at 10:42 AM.

  5. #15
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    Hi Ashley
    Welcome to the group! I was just diagnosed in the last few months with WG. I am currently on Methotrexate and Prednisone (plus a TON of other meds for a heart condition). I am hoping to get into remission and be able to get off the prednisone which is not a fun med to be on. The weight gain has been horrible, sweating, eyes are messed up--the list goes on and on. BUT-- I have faith in my doctors and they tell me that I am making progress. It is just a long, slow process. Hang in there--you found a great bunch of people here. They have been very helpful to me and its nice to be able to talk to someone who understands all of this. Tell your friend to be tough and we are all there for him!

  6. #16
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    Hi Ashley

    Im Summer. Im also 22. Sorry to here about your friend. I've had WG for about 6 months now. And Yes the Meds are very important.. i take prednisone and methotrexate now .. and alot of others...
    Summer

  7. #17
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    Welcome to the forum, Ashley! I was diagnosed in December 2003 (Merry Christmas!), though symptoms strongly support a full-bore flare started in late March 2003 (Happy Birthday, Doug!). By the time they had to drag me to the hospital in am ambulance, I had lung and kidney involvement, the so-called severe form of WG. Jack's comment about limited WG, above, is something all weggies need to keep in mind, especially those with "limited" WG.

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    Hi Ashley, I was diagnosed in november 2006. Limited Wegs does not mean that sickness is limited but that sites/organs it has affected so far are limited. This can change very rapidly if the appropriate steroid/chemo is not followed. If your friend wants to see what a holistic approach can do, that is OK as long as he understands that he cannot under any circumstances stop his medication or counteract it. Many natural curers tell their clients to stop taking regular medications and that is what scares me.
    Jolanta

  9. #19
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    Luce; I completely agree with you, he is fighting the wrong thing. I'm hoping he'll soon be able to see this... he's currently on his way to New Jersey to see a Naturalist doctor person lol is that even what they're called? haha. I'm also making sure he knows what symptoms to look for, just in case Weggies wants to play stupid game with him. I'm glad your kidneys were able to be saved before more possible damage happened.

    Jack; 25 years, huh? You're a fighter!! Would you say it's better or worse now?

    Sangye; I think you're absolutely right. He's not seeing how serious this illness is. I'm hoping to make him more aware of this when I see him on Monday. Would have seen him tonight, but it was a last minuet thing to go to New Jersey (which is an 8 hour drive from where we are). I'm currently reading the thread that Georgia has created. It's really interesting. I'm also with you 100% when you say, "He might want to go away, but he could wind up really "going away" if he drops the drugs for natural remedies.
    Also, when you say "near dead" what were your symptoms?

    DuaneHart; What heart condition do you have, if you don't mind me asking? I've also realized that everyone on here is like a "family", really glad (and grateful) I've found this support forum! I shall definitely tell my friend to be tough. I'm going to try to get him on this site!! Hopefully he will!

    sumsum5587; How have you been coping? I can't even begin to imagine what it's like to be diagnosed with WG. Must be hard, but I believe there's a reason for everything. G-d only gives us what we can handle. Stay strong!!

    Doug; What were the symptoms you had before going to the hospital?

    jola57;
    I agree with you. Limited does not mean it can't continue attacking other sites. Also, I'm completly against him stoping his meds. That scares me the most. I mean, if stopping the meds helped, wouldn't you think everyone would have done it by now? I told him that at least, until he's in remission, he's got to not screw around with this. Gotta get this under control first before he tries what else is out there, but even then, I'd still be worried.


    I tend to worry a lot. Especially since I've already lost the love of my life. It almost feels as though I'm reliving my situation with him, again with my best friend (who I used to date last year lol). It's hard, but I honestly think, he's going to be okay and G-d put me in his life for a reason! Once again, thanks for all your posts everyone!!

  10. #20
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    Good luck to you in keeping your friend's faith in his current treatment and I agree that sometimes we are ment to be in certain places at certain times
    Jolanta

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