Oral CTX - How long does it take to work?

[aewaustin]

Have just spent time reading through old posts to try and find my answers, but couldn't so thought I would post. While looking through the old posts though it was really nice to hear folks talk about the same things that are frustrating me right now, and to see the positive comments back, so I wont vent much here :) (Elephant and Sangye, your posts were a few that were really helpful...)

I am impatient, as you can probably tell from my posts :) I started CTX at 125 mg 12 days ago, and am very curious to know how long it takes to kick in. "Lucky" for me I have pretty intense kidney pain and leg pain that goes up when the disease is more active to it is easy for me to tell when the drugs are kicking in. After the RTX in April I was able to go off all pain pills in three days and within two weeks I was back to the gym daily, RTX was amazing, unfortunately it did not work for more than a month...

Anyway just interested to hear what folks have to say about oral CTX. Praying that the answer is that it will kick in any day now... I did this treatment 19 years ago, but the disease was so different then for me since I did not feel bad and did not have any pain, so I can't go by anything from the first go round in this respect.

Frustrated, trying to be positive, but feel so crappy that it is hard. Sigh... Just really so over this...

[pberggren1]

ctx usually kicks in right away but does not reach its full effectiveness for about 3 weeks.

[Chris G]

Sorry you're struggling Anna. Hang in there!

[Sangye]

I'm so sorry you're feeling awful Anna. Usually they ramp up the ctx dose for a couple weeks before it gets to the normal dose. It takes about 4 weeks to really kick in. Why are you only on 125 mg? Are you very small or are you still gradually increasing the dose? The usual dose is 150mg.

I did very poorly on ctx and got sicker and weaker by the day. My original lousy doc kept me on it for 7-8 months, ignoring the fact that it was suppressing my bone marrow. I can't even fathom how people feel better while being treated with ctx!

I'm sure it will start to kick in soon for you, Anna. Hang in there and take things one day (or hour) at a time. :hug2:

[aewaustin]

Thanks guys... Sangye, my doc came up with my dose based on weight, but I was on 150 mg the first time I did this and I am at the same weight, so something to discuss with my doctor next week. I pray this works like it did the first time, but for now it is really not going so hot... New issue today is having my heart race up to 130 and is staying at 100 or so which is not normal for me, normal HR is about 85 or so. Sigh...

[Sangye]

Maybe you're at the lower end of the weight for 150mg and your doc wants to use as little as possible. When I went on ctx the second time I was at the higher end of the weight for 150mg but Dr Seo wanted to use the lowest dose possible. As it was, my blood marrow began to fail even at 100mg.

Are you anemic? That can cause a high heartrate. High dose pred can do that, too.

[RCOSSIO]

Are you taking and pred with CTX...it helps alleviate the symptons for the 4 weeks you need for CTX to kick in. When I was diagnosed it was 150mg of CTX and 60mg of pred.

[aewaustin]

Sangye, I don't think I am anemic, they keep up on my lab work and everything has been normal (except for my kidney stuff).

Richard, yep on 60 mg of pred :( I am under care of Dr. Langford, so the good thing is that I know my expert is one of the best...

Probably just need to give it a week (I am praying) but struggling so much today and so nervous because I seem to be getting worse and not better...

[NicShaf]

It took a couple weeks to kick in for me. I hope it starts working for you and you feel better soon.

[Sangye]

Anna, it's probably the pred raising your heartrate. Very common with the high doses. I'm so relieved you see Dr Langford.