It can take some time but drug free remission is possible, been almost three years for me. The best to you and Sam.
Dale
It can take some time but drug free remission is possible, been almost three years for me. The best to you and Sam.
Dale
Well, that's cool that your son Alex is a nurse! Perhaps he can take some of the weight off you as far as figuring out what Wegs is all about and how to deal with it. If he has the time, that is.
Anne, dx'ed April 2011
Remember, we are all different, I was diagnosed August 14, 2009 and was WG drug free on June 30, 2010. I am 61 yrs old now and still have to deal with fatigue, neuropathy and other aches and pains, however I feel Sam will not have to deal with a lot of things due to his age. I had a lot of years of smoking and being a plumber with all that goes along with it. Youth will be on his side.
Dale
I was diagnoised in 1996 and was into remission with 18 months, but caught a flu, and had to go back on meds. for another six months, and since then no meds. at all. So fingers crossed for your son that he will be improving real soon.
I don't want to brag... but no one is doing it for me. I was blessed with WG over thirty years ago. I was near death. 6' tall and 122 lbs going into the hospital. Kidneys failing.
Cytoxan was the only treatment. I did almost two years of daily oral Cytoxan until I had blood in my urine. I then enjoyed twenty years of drug free remission and good basic health.
Now the treatments are even more advanced and there are a LOT more doctors that know how to treat WG.
Your story could end up being even better than mine.
So true that everyone is different. It sounds like Dale did exceedingly well to be off all drugs in less than a year. That is pretty amazing to me, but shows it is possible. And that Kirk was in remission for 20 years is also very impressive. I feel I have done very well with my Wegs and responded well to the drugs, but I'm still on them after 2 years, though no longer on the original CTX but on the milder MTX instead. I was dx'ed at 58 and am now 60, and I don't know how differently younger people respond to treatment than older ones, or how much of a factor age is. I think you will feel better when you start to see Sam's symptoms improve once he has been on proper treatment for a couple of months. The problem is that many of us do need to stay on the drugs because they are what is keeping the symptoms under control. Take all the encouragement you can from those who have indeed gotten into remission and off the drugs.
Anne, dx'ed April 2011
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.
Ya im sorry I have been off. Doing college The hardest part is rapping the idea around my brain. Getting diagnosed can seem bad but It was something I fought for. Now that you know what it is you can handle it better. Once all the body symptoms quite down and I got used to my new body (it really is like mutating), It is just hard to digest and take in the changes. This really just makes people stronger from all the people I have talked to on this forum. Climbing mount Everest or just walking out of the hospital to a plain to Mexico followed by college. This ordeal is often the hardest for the people on the outside who are unable to just put it all back to the old way. I have found a lot of younger people in the US tend to run on facebook? I really hope the diagnosis leads to the right drug and he starts feeling better quickly!
Experience is the only way to survive. <3 Rini Orange
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