View Single Post
Old 05-14-2011, 09:02 PM
Mariel Mariel is offline
Member
 
Join Date: Dec 2006
Posts: 724
15 yr Member
Mariel Mariel is offline
Member
 
Join Date: Dec 2006
Posts: 724
15 yr Member
Default

I gave up Interferon a week ago. I wasn't taking it for MS (I had refused the CRABS for MS years ago), but to lower platelets and red cells which I have high due to PolycythemiaVera.
It was causing rash on chest, arms, upper legs. It caused me to have trouble breathing some nights for several hours--I breathed deeply and heavily and could not sleep while doing so. It gave me fevers on every night I took it, although the fever seemed much less toxic than the rashes and breathing difficulty. I thought I might have bulbar paralysis which some people get. One form of it gave me all day spasticity and depression, and I believe that was due to the Polyethelene Glycol in it used to make it
timed-release.

It did one good thing, it seemed to ease the clogging of my small vessels in my toes, and
thus my neuropathy went down. The weekend before I quit it, I had very little foot pain, and that was great--I got to go to Mother's Day brunch and to my grandchildren's ball games. But I consulted with two doctors and the pharmacist at the compounding pharmacy which was making my latest Interferon. They said the rash probably indicated
I'd developed an anti body to the Interferon.

I am getting a salve for my feet from the compounding pharmacy in New Jersey, which will be Marcaine and Gabapentin. I don't think I could tolerate Gabapentin by mouth, but
the pharmacist assures me this will affect me less than the Gabapentin by mouth. I'll try it. I am also doing acupuncture, and this is helping the rash to leave, although it's done
nothing for the foot neuropathy so far.

I was never pushed to take CRABS, because the neuro knew my drug sensitivity, but did not suspect that I had Porphyria as well, which can increase sensitivity to SOME.

When I was young, though, I was pushed to take a very bad drug, Meprobamate, to control intestinal spasticity. I took it 18 years, and I think it actually contributed to my decline so that I showed lesions on MRI and eye abnormalities on neuro tests. A wise doctor got me off of Mepro onto Klonopin--I tried for a year to drop Mepro and could not do it without Klonopin. I think Klonopin is good for me in small doses and still take it.
If I don't take it I have much more jerking, spasticity, and fine shaking. I wish the doctor had diagnosed my illnesses instead of pushing and insisting on Meprobamate.

I am in a wheelchair part time because I am not taking Interferon, so my state is somewhat analagous to some of yours. I may get a stroke quicker from a clot, if I get a clot. I am
determined to be as upbeat as I can during the time left, and I am happy I decided not to take INF any more, and actually my hemo told me to give it up.

I recommend the Swank diet for MS, and I even recommend it for my other diseases as well. Low saturated fat is a good idea for most people. So if you go off Rebif and other
CRABs (I do not know what Rebif is--should look it up) consider doing Swank. See if you don't get better balance, better eyesight, etc. It works for some! I've been on it well over 25 years and I cannot give it up.
Mariel is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AynaDee (05-18-2011), Dejibo (05-15-2011), dmplaura (05-15-2011), SallyC (05-14-2011)