CTX seems to be working

[Michael Dean]

I visit the site regularly but seldom post. There seems to be so much about wegs that I don't know I learn something every time on come on here. I really appreciate all the great advice and thoughts form many of the regulars Sangje, Jack, and Phil to name a few.

To update my situation:

I was diagoned in March, have been on the usual Pred (was 60 now reducing weekly I'm at 30 now), Lisinopril 5mg (eveen though I;ve had high blood pressure) and CTX monthly infusion.
In May I had my 3rd CTX infusion and all my blood/urine tests have come back normal. So my dr wants me to do 1 more infusion in june. If all stays good we may try go some kind of remission drugs???
That part is new to me? She wants to get me down to 10mg of Pred a day.

Anyway it looks like the drugs are working I feel good, still a little weak but improving the further I get away from the chemo.
I guess I'm just waiting for the other shoe to drop?

[Psyborg]

Don't wait for a shoe to drop. With luck it may not for you. Certainly the disease will always be there, but if you get into remission you have a good chance to stick there.

My guess would be methotrexate for your next med, but that might depend on your doctor. I know MTX has been a lot easier on my body than CTX has been.

[Sangye]

That's great, Michael. Wegs can sure cause a lot of anxiety due to all the uncertainty. Rather than losing bits of your life to worry, I suggest you enjoy the fact that you're feeling better now. Allow yourself to be hopeful about the future. Wegs that responds to treatment quickly like yours seems to have the best prognosis. :smile1:

[renidrag]

Sometimes the other shoe doesn't drop or at least not right away. I have no where near the stories most folks have in this forum. I was diagnosed in Aug.09 and drug free remission in June 10. I wish there was an easy answer to all the questions, but for me I try to enjoy each day as it comes. I have other issues not related to WG, but am thankful that part of my life is over for now.
Dale