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renidrag
08-07-2014, 07:54 AM
June 30 2010 I was given the remission word and stop the CTX and lets see what happens. Well, for 4 years + I could say I was in drug free remission until August 1, 2014 when I was put back on low dose prednisone to keep inflammation levels down. I must say I do feel better and have more energy but that will probably wear off. Just thought I would let you know, no biggie. It worked Anne, thank you.
Dale:mad1:
debhaz22
08-07-2014, 08:36 AM
Hi Dale,
I'm sorry you're coming out of remission, but it must have been a wonderful 4 years..., right?
How do you know when you're in remission? Is it only according to blood results?
Thanks!
Deb H.
annekat
08-07-2014, 11:03 AM
Well, Dale, since many of us call ourselves in remission when we are still on some meds, it would not be much of a stretch for you to do the same! I haven't heard of many on here who have reached a drug-free remission. It seems like most at least need a little pred to feel OK. I'm glad it doesn't sound like a real flare, that you are feeling good, and I hope that won't wear off! Maybe this will let you avoid going back on any immunosuppressant.
renidrag
08-07-2014, 11:55 AM
It pretty much is bloods and the Doctor, John Stone at the time asked me how I felt? I replied I felt O.K. And he asked if I wanted stop all meds, only on CTX at the time. Agreed, here we are now. Please remember I still deal with neuropathy and other stuff so I am not going to beat the world, just a little easier today.
Dale
annekat
08-07-2014, 12:53 PM
So you got off pred first and then CTX. That sounds like a good way to go, in some ways.... get the pred out of the way first.... your doc must have managed it well for you to be able to do that.
renidrag
08-07-2014, 01:23 PM
Pulmonary diagnosed, I went with what he prescribed. He was so into my care I didn't question anything. Heck, I didn't know anything. I was, sorry, we were very lucky.
Dale
vdub
08-07-2014, 05:30 PM
I must say I do feel better and have more energy but that will probably wear off.
Does it wear off, Dale? Do you get sort of immune to the pred. I got on 5mg/day about 5 months ago and I'm still hopping. I really hope it doesn't wear off for a while --- say, 30 years....