Cytoxan - So tired after one month on 125-150, when will this get better???

[aewaustin]

Me again, me frustrated again. I am realizing that I just don't do so well with this. Usually quite tough and positive, but being so down and sick like this gets so freaking old (as so many can unfortunately relate to). Tomorrow marks one month of CTX, starting at 125 and then upping to 150 about a week ago. I am so tired, like bone tired, and can barely function through the work day (typing this on my laptop while on the couch right now). Weekends are spent on the couch recouping for the work week. My doc is planning on staying at this dose for two more months.

Am I going to be this tired for the whole thing or does it get better??? I know nobody can say how someone else will react, but just curious to hear others experience. Just do not remember being this down and out from when I did this 20 years ago, although I was much younger then...

Thanks for everyone's support, love that I feel comfortable posting such a honest message on how I feel.

Anna

[Sangye]

Anna, that's how I felt on ctx. Way worse actually but I started off in much worse shape. (It was a year before I could stand long enough to brush my teeth.) Make sure your doc is ordering labs every 2 weeks to keep an eye on your CBC.

I hope you feel better soon. Hang in there and count the days on your calendar. Sometimes that helps.

[Psyborg]

That's how I felt on CTX as well. I actually didn't know how bad it affected me until I was back off of it. Just hang on tight, once you get past that three month timeframe it does improve a bit. If your work can allow it in some way I found an afternoon nap helped a lot. I was still a long way from full capacity, but I was able to at least do some working.

[drz]

I remember taking lots of naps when on CTX but then I had other issues then too like anemia, frequent infections, bleeding in lungs. poor kidney function etc so don't know how much was due to the CTX and how much to other issues but it gradually seemed to get better over several months.

[aewaustin]

Thanks guys, nothing more valuable than getting info from the folks that know.

Sigh... Was hoping you guys would say something different, but was figuring out this was probably the way it would be...

So now I just want off CTX at 150 asap I know that doctors are now trying to get folks on and off CTX as quick as possible because of the side effects. Do you think after being on CTX at 150 for two months it could do the trick, or is it three months minimum? After one month there is a bit of improvement, but not a ton, hoping at the two month mark it might be good enough to go down to 100 or something. Wishful thinking???

[Sangye]

LOL Look at you bargaining! Three months is minimum. It doesn't even start working for one month. If you have disease activity severe enough to warrant using ctx, then it cannot be controlled in just 1 or 2 months.

[aewaustin]

Sangye But is that three months at 150? I know that I will have to be on it for awhile, it is just at the 150 it sucks so bad. And yep, totally bargaining! You should hear me with my doc, about going down on pred, thank goodness she likes me

[Sangye]

Hahaha I do the same thing with Dr Seo. "You need this dose." "How about half?"

I've never seen anyone with severe disease activity taken off it in less than 3 months (unless it's suppressing the bone marrow, as in my case). First month it's barely working. Second month it's working and starting to control the Wegs. The third month is needed to continue gaining control. You do not want to jump off ctx while you still have smoldering disease or you'll wind up having to start over. At the end of 3 months the Wegs is hopefully controlled enough to transition you onto a milder drug.

[aewaustin]

Yeah I know I won't be jumping off after three months, but would like to jump down I have a feeling that I will be on CTX for 5-6 months, I just think this 150 thing blows, so maybe at 100 I could function better. After this I will go to Imuran, already can't wait...

[drz]

Yeah I know I won't be jumping off after three months, but would like to jump down I have a feeling that I will be on CTX for 5-6 months, I just think this 150 thing blows, so maybe at 100 I could function better. After this I will go to Imuran, already can't wait...

You don't want to go down in dosage from having low WBC like many of us did. I had several reductions in dosage for this reason but then it took longer to get the GPA under control so I was on it 8-9 months before switching to azathioprine. If your body tolerates it with no problems with low WBC or anemia or infections, then you might also be able to tolerate it better after your body adjusts to the dosage. The main thing is to get the GPA under control as soon as possible and to keep it there.