PDA

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



aewaustin
09-01-2011, 07:35 AM
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
09-01-2011, 08:11 AM
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. :hug1:

Psyborg
09-01-2011, 08:29 AM
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
09-01-2011, 09:26 AM
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
09-01-2011, 10:30 AM
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
09-01-2011, 10:34 AM
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
09-01-2011, 10:41 AM
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
09-01-2011, 10:52 AM
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
09-01-2011, 11:09 AM
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
09-02-2011, 05:16 AM
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.

aewaustin
09-02-2011, 05:27 AM
drz - Ugh, I know you are right, but so miserable right now...

delorisdoe
09-02-2011, 06:10 AM
gotta love the feeling of not being able to stand up long enough to take a shower. It is all part of the cure though. The remedy is the experience and it is a strange play on words...

NicShaf
09-02-2011, 06:16 AM
I did start to feel a little better after about 3 months or so...I think I just started to adjust my lifestyle to my new energy levels, and now I'm not super tired all the time. I'm not like I was before Wegs, but it is better now than when I first started Cytoxan.

Hope you start feeling better soon.

Sangye
09-02-2011, 06:17 AM
Leigh, I couldn't stand long enough to brush my teeth! I couldn't stand at all in a shower for a long time. I had to keep my oxygen on, too. Sure glad those days are over.

Michael Dean
09-02-2011, 07:54 AM
Anna,
Sorry you're feeling so bad. Is your CTX an infusion or pills? I was on CTX for 5 months but it was a monthly infusion (100mg), which made me sick for 3 or 4 days.
Are you taking it daily or weekly?

delorisdoe
09-02-2011, 09:13 AM
Leigh, I couldn't stand long enough to brush my teeth! I couldn't stand at all in a shower for a long time. I had to keep my oxygen on, too. Sure glad those days are over.

I dont remember brushing my teeth, maybe I didn't. :wink1: I think I remember the showers so vividly because seeing as it was the only thing I do alone with any regularity, it became the only place in those 2+ years on cytoxan that I allowed myself to acknowledge that I was beat. All other areas of my life I felt like I had to act as unsick as I looked. The shower was my only true friend .

aewaustin
09-02-2011, 09:31 AM
Nicole, Thanks :) I am one month down, just have to figure out how to make it to the three months... Seems this is just a phase, everyone is saying the same thing, just got to make it through.

Michael, Thanks as well :) I am taking the pills daily... Just need to suck it up I guess, but am really surprised how hard this is hitting me, just was not prepared for it... Am used to powering through stuff, and there is no powering through this right now. So frustrating...