Interesting question re CTX & distal neuropathy

[marta]

This gave me an aha moment today and I'll share it with you see where it goes.

As I was riding up the ski lift today for my one of two rides on the mountain, I sat beside a friend who has lymphoma and is being treated with pretty much what I've been on, less the heavy steroids, and he said something to me that made me wonder if all the knowledge we take for granted as being true might have the odd hole or two.

He told me that he was scheduled to have 8 cyclophosphamide infusions and he noticed that after 6 he started loosing the feeling in his feet and hands. He mentioned it to his oncologist and was immediately taken off it because it can cause that in some people and in some cases it never goes away.

Then I thought about how many people I've met on this forum alone with some degree of distal neuropathy, but I honestly recall very few with that being one of the early symptoms - forgive me if I'm wrong. Then I thought that CTX/cytoxin/cyclophosphamide/etc.... has been the big gun for this disease since the early days and only resently has RTX become the other big gun (of two) to fight off an acute case after which you go on the maintenance drugs, and maybe all of the cases of distal neuropathy might be a drug side effect rather than disease damage. Don't know that this would make any difference either way, unless maybe switching from CTX at the earliest onset of neuropathy and seeing if the damage can be halted, but I think it might be something to bring up to the docs???? Who knows. I'm just throwing it out there.

[pberggren1]

My doc mentioned something like this in the past but also said that ctx has so many unknown and ugly side effects.

[pberggren1]

But I also noticed on my last flare when we used ctx I got an ingrown left big toe nail and some neuropathy that comes and goes now. Gotta love the drugs we take..........NOT

[Al]

Sorry I missed this thread earlier. I can only add m own experience: The neuropathy I have came long before the CTX infusions, so I can't blame the drug for that, On the other hand, the blasting of the taste buds is almost certainly die to the cytoxan. And that has never gone away.

Al

[Dryhill]

But I also noticed on my last flare when we used ctx I got an ingrown left big toe nail and some neuropathy that comes and goes now. Gotta love the drugs we take..........NOT

That is why I say this is an exciting disease. On the one hand we have a disease that can, and will, do many things to us, and on the other hand we get to take many fun loving drugs with their own design on doing nasty things to us. I find it ironic WG often damages kidneys and one of our meds, Methotexate, can cause problems with our liver, great what a choice. Then RTX can cause cardiac arrest, so if the good old dog does not kill you then the cure might ....... oh joy!!!!!!!!!!!

Jim

[drz]

if the good old dog does not kill you then the cure might ....... oh joy!!!!!!!!!!!

Jim


If you can survive the treatment, then things generally get better but sometimes it can get rough.

[Sangye]

Ctx is also toxic to the lungs. It's listed as a known side effect. I developed a cough the last 3 months on ctx. My rheumy at the time blew it off but it stopped as soon as I stopped ctx.

[marta]

I also remember after reading the pamphlet that comes along with the pills that it can affect how your body reacts to anasthetic, and I thought that was very freaky, then I read a bunch of posts on here about people not being completely under during various surgeries. Eeeek. That's when I decided to get the medic alert bracelet (which I don't use anymore because it's a moving target) just in case I have to go under anesthesia in an emergency, I don't want to wake up halfway through, or be awake and not able to tell them I can feel things. Man the list with CTX is insane.

[pberggren1]

It would be nice if rtx worked as fast and as well as ctx without it becoming as toxic.

[Sangye]

I didn't know that about anaesthesia and ctx, Marta. Wow. I wonder how many people get too much or too little as a result. :sad:

[pberggren1]

It makes me wonder too about the procedures and surgeries I have had done over the past few years where I needed to be put under. I had some wierd reactions a couple of times after I was awake. Like severe chest pains and trouble breathing.