[Dejibo]

Um WOW!

http://www.bloomberg.com/news/2011-0...s-suit-1-.html

An ex employee blew the whistle that rebif was paying HUGE amounts of money to MDs to send them on luxery vacations, seminars, and resorts to promote their products. Found guilty of kickbacks as high as $25k for prescribing Rebif to their patients.

Big Pharma needs to hang its head in shame. Even when patients were complaining of horrible side effects, increases in lesions, and clearly showing signs of progression while on this med the MDs kept prescribing it and getting those nice vacations and kickbacks.

What is this world coming to when we keep sticking the sick with meds that make them sicker so that the MDs can have a nice spot to play golf?! This makes me sick! it makes me wonder if this is why MY MS MD was so dead set against me quitting copaxone even tho I was clearly miserable and failing badly while on it. Before he came to the clinic no one would even dare keep you on a drug you said no to, but once he arrived it was all high pressure and "you must not quit" speaches.

[Kitty]

Originally Posted by Dejibo

Big Pharma needs to hang its head in shame.

That'll never happen. They've got the MD's (well, most of them) wrapped around their syringes full of poison and are keeping them there with monetary gifts.

Maybe this is why my Neuro doesn't especially like me. I won't take any of the DMD's he's tirelessly tried to convince me to take. When I question the effectiveness and safety of them he sort of "scolds" me that I should be grateful these meds are available. Well, thanks but no thanks. I actually want to feel better....not take more meds for more side effects. It's just a vicious circle big pharma has created.

IMHO, there should be criminal consequences for these pharmaceutical companies and even for the doctors who accept these elaborate kickbacks. Whatever happened to "do no harm"?

[kicker]

I think my first neuro was a good guy. He insisted I choose my DMD myself. Of course stupid me chose Rebif but nothing would have helped PPMS me. Old neuro now in charge of Johns Hopkins MS Center. Think he's one of the good guys. Sometimes I like the ease of PPMS, no decisions to make.

[barb02]

My neuro also gave me all of the information of DMD's to take home and read and did not choose for me. The HMO that I go to also does not accept freebies from companies and does not give out "free" samples to patients.

[AynaDee]

This honestly saddens my heart. And to be honest with you, completely verifies my thoughts on these drugs.

I am on Rebif, and I fight myself every other day on taking that shot, I do it, but I hate it.

My neuro is very supportive of the drug. I told him I do not like what it is doing to my body, how it makes me feel, and it upsets me to think of what I am putting into my body 3x a week and to continue to flare. He basically said "suck it up kid, you have MS, and no other choice."

I have been super sketch about this drug for over 2 years now.
I told my friend's father what the drug was, he was floored and asked me how much they were paying me to take that drug. He explained to me, that they really don't have the knowledge they claim on Interferon and that it is still in test trials, said he didn't understand how I could be taking such a horrific drug and it's costs.

I understand why my neuro refuses to take me off of Rebif after being on it for 2 years and still having flares and active lesions.

That article breaks my heart. This drug breaks my heart..

I think I am going to do what I think is right. after all. It is MY body and MY life. I'm just so terrified of dropping that drug off and seeing a wheelchair this early in life. But in the same sense, I'm still progressing on the drug, sometimes I feel the Rebif is making my MS worse

So what would happen if I give my body a break from the drugs?
What would happen if I change my diet to consist of alot of anti-inflammatory foods and got on a good vitamin regimen?

I just don't see that this drug is slowing my disease, I see it as irritating my disease. I see the nasty spots all over my body and think to myself "how could this drug possibly be doing beneficial things for this disease when it leaves such nasty marks and makes me feel so crappy?

I think I am going to take this into my own hands...

[Dejibo]

my old neuro gave me all the books, all the facts and asked me to choose. They wouldnt even talk about Ty back then. New neuro comes in and all of a sudden its Copaxone all around! he was quite pushy about it, and when I failed off of Betaseron due to high liver counts he wanted me on C that same day. I took a wash out peroid and when C became too much to take, I begged for a full year to be released. I was told I would be quite ill if I quit, I was risking a huge flair that would probably land me in a chair. They scared my DH and really were quite pushy about it. In the end I approached him and said NO MORE! I dont care what your opinion is, and I will leave this place if you insist on me taking it.

I feel TONS better since I stopped. The CRAB drugs have about a 33% chance of preventing the next flair, and if you get a flair its about a 33% chance of making it less severe. I had a 100% chance of feeling lousy ALL day EVERYDAY! and my skin has huge dents that will never fill in. I was cog fogged out of my life, and quickly headed towards bed rest. I took the chance, and even if I do land in a chair, I would rather be in a chair with my wits about me then out of a chair and unable to live my life.

I hate this! we are supposed to be able to trust these guys!

[AynaDee]

Dejibo

You. Are. AWESOME!

I am so glad to hear you are feeling better while being off the drugs!

How long have you been off the DMDs?
Have you seen progression since being off the DMD?

I sit back and think of how my body felt right after being diagnosed and still not on a dmd. Even though I was having some serious issues at the time, my body didn't feel as ICK.

Also, every injection site I have hurts. Very bad. Especially if I bump my arm on something or my boyfriend gives me a lil love tap on the rear or thigh, it will send me into tears, and I have a very high tolerance for pain (as we all do per this MonSter giving us so much crap on the daily).

My boyfriend freaks whenever I talk to him about considering to drop the drug off, so does his mom, but the thing is, they're not the ones that have to live with the feeling it gives me. They don't have to live with the pain my injection sites always feel. They don't have to worry about "where the hell am I going to inject tonight, every site is purple and red!!??!"

I agree with you Dejibo, I don't want to see a chair, but if it happens it happens. I'd rather feel decent now and deal with a chair, than no chair to deal with but can't enjoy life per feeling so sick all the time.

I dream of never having to take Rebif again. almost every night actually. I think my time is coming.....

[Kitty]

Aynadee, the DMD's don't work for everyone. They did nothing for me. And I tried Copaxone and Betaseron. I stopped Betaseron against my Neuro's wishes. Everytime I see him he still tries to convince me to go back on it. I'm doing better taking LDN yet he won't prescribe it to me. Makes no sense. I've quit trying to explain it to him. We have to be our own advocate and do what we think is right....after all, it's our body and our life. I think I know what works best for me even if he does have the medical degree. I've got MS.....he doesn't.

[Mariel]

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.