Welcome Tammy

[Guest guest]

Welcome Tammy, thanks for introducing yourself. Are you aware that

some of the chemo medications can make CMT worse? Take this list to

your Aunt's doctor.

Chemotherapy Agents:

Adriamycin

Bertezomib (Velcade)

Chloramphenicol

Cisplatinum (all Platinum analogs)

Doxorubicin

Etoposide (VP-16)

Ifosfamide Nitrous

Oxide (N2O)

Interferon-a

Misomidazole adjunct to radiation therapy(Metronidazole)

Suramin

Taxol (Paclitaxel, docetaxel)

Thalidomide

Vincristine (all Vinca alkaloids)

I hope you will find helpful and hopeful.

~ Gretchen (Founder and ELC of )

[Guest guest]

Hello Tammy,

Welcome to our site!

Kay

[Guest guest]

Hiya Tammy,

When I read the posts on this site I feel like a big baby - my CMT is

nowhere near as bad as others I've read here. I just have nerve pain

in my feet.

I was on Neurontin not too long ago and although it provided me with

some relief, it wasn't enough. My doc put me on Lyrica (3x200mg)

which does seem to work fairly well and provided I don't miss a dose.

My doc has recently added 50mg of Amiitriptyline that I take

before bed, and it seems to be helping even more, especially with my

fresh " get out of bed in the morning pains " which are my worst most of

the time.

My sis takes 10mg of Amyl each night before bed for her foot pains

(not CMT as far as we know anyway) and she was shocked that I started

at the 50mg dose level. I do weigh about 2x what she does though.

My foot pain is merely an annoyance these days, thank goodness, but

the Amyl seems to make me a bit lethargic and spacey.

Now I supplement with additional coffee to keep me on my toes (lol) and it seems

to work. I just thought I'd share my experience with Neurontin and my graduation

to the Lyrica/Amyl combo. In my opinion and experience, the Lyrica is far

superior to the Neurontin/Gabapentin I took previously.

Welcome to the group!

-Steve