CTX side effects

[eyeopps]

I need some advice. The docs finally have enough information from tests to have determined that I will be starting CTX infusion every two weeks. I am also on Preds, now 25mg, being tappered down to 15 over the next short while. I spent some time going through the Meds forum and seem to notice that nausea is a potential issue.
The other seems to be extreme tiredness. While some weggies seem to be able to keep working it is a concern for me. I am on disability right now. My work involves being on my feet for 5 to 6 hours per day. I probably walk 1 to 1.5 km at work every day. It is also a very very very dusty environment.
Does anyone have any experience or advice to offer?

[Titus3:2]

Hi eyeopps,I have taken CTX orally,and infusions.I was able to work,and continue to do what I wanted.It did make me nauseated.Drinking water might help,but I found that hard to do.I was always glad when I was able to quit taking it.Methotrexate was worse on me than CTX.Take care.

[Alysia]

why CTX and not RTX ?

[eyeopps]

why CTX and not RTX........ $10,000 dollars

[Alysia]

why CTX and not RTX........ $10,000 dollars
that's too bad and too sad :thumbdn:
but if your doc think that rtx is better and the problem is the money, then you can try to get it for free from the meds company or at some research program. ask your doc about it.
there was some link about it here, not sure if I can find it, but if I do, I will post it here. where do you live ?

[SpaceflightAddict]

why CTX and not RTX ?

CTX works a lot faster than RTX. If you are having severe problems and it needs to get controlled fast, CTX is still the go to.

Eyeopps,
I was on oral CTX and high dose prednisone when I was first diagnosed. The high dose pred covered up some of the side effects from the CTX. As the pred tapered to lower levels, I did have a lot of fatigue from the CTX. I never had any nausea from it. My rhumey said that younger peoples stomachs usually tolerate it much better. I don't know how my experience would compare to IV CTX though. Good luck and get better!

[Titus3:2]

It is always about money.Thought so.eyeopps I would stay on disability if possible.At least until you know how well you can tolerate CTX.I have had good luck with CTX.The maintenance drugs have not worked to well.I am on Imuran as a maintenance drug,and it seems to be working, with no side effects.Speaking of money does anyone have an extra trillion the U.S. can borrow.LOL.Take care eyeopps.

[Alysia]

please check on this thread, on page 2, the first post of me2, explainning about an option to get the med from the company:

http://www.wegeners-granulomatosis.com/forum/off-topic-discussion/2941-hostage-bureaucracy-2.html

[windchime]

I need some advice. The docs finally have enough information from tests to have determined that I will be starting CTX infusion every two weeks. I am also on Preds, now 25mg, being tappered down to 15 over the next short while. I spent some time going through the Meds forum and seem to notice that nausea is a potential issue.
The other seems to be extreme tiredness. While some weggies seem to be able to keep working it is a concern for me. I am on disability right now. My work involves being on my feet for 5 to 6 hours per day. I probably walk 1 to 1.5 km at work every day. It is also a very very very dusty environment.
Does anyone have any experience or advice to offer?

If wegs is in your lungs being in a dusty environment is not good for you and you should be able to remain on disability. I had no nausea after a couple of weeks from the CTX and I was taking 200 mgs. I split my dose taking 100 at 8 and 100 at 10. I've had fatigue but I had that before the CTX. The worst is my hair loss. Although I'm not bald I've lost quite a bit of hair. So good luck with the infusions. Maybe there will be fewer problems with it.

[annekat]

I agree that CTX works fast and might be the best option for quickly getting things under control. RTX can always come later if needed. I'm like Cindy, I split my CTX dose, had some nausea and dizziness, but got over most of that in 2 or 3 weeks, with the help of the high dose pred which made me want to eat and helped the nausea. It is very important to drink lots of water with CTX, even if you have to force yourself; finding mild herbal teas that don't need much sweeteners is a good way to get the water you need. I reuse the teabags in the same cup. Also diluting fruit juices to be higher in water content is a good way to go.

Like some others, I have had more nausea with the MTX, for a longer period of time than I did with the CTX, even though I split the dose on that, too. However, recently, this problem seems to be easing up. We can get used to these things, and everyone is a little different. Just hang in there with the CTX and realize you may need some time off work to deal with this. If you need or want to go back to work just take it slow and easy if you can. The dusty environment does not sound good at all. I hope you have a good respirator or some such protection. Disability and not working for awhile may be your best option. You may have an easier time than some, everyone is different. True, the infusion form of CTX could have less side effects; I don't know, I took the pills. The walking you do to get to work would show you are handling things pretty well, if you are able to do that. Good luck.