I’m going to gripe about something here that, probably, I should be grateful for -- all the supposedly wonderful breakthroughs in treatments for multiple sclerosis.  Specifically, the CRAB meds that theoretically keep MS at bay. “CRAB” is the ironically accurate acronym for the “big four” MS drugs that researchers think alter the natural course of MS: Copaxone, Rebif, Avonex  and Betaseron.

What brings on my diatribe against these meds this time?

Oh, the usual … I have MS and write New Mobility's “MS Life” column, so I read everything MS-related that comes my way. I browsed the latest copies of various MS magazines and read the usual articles extolling the wonders of the CRAB drugs -- they’re safe, they’re effective, they’re covered by most insurance plans, oh won’t you try them, please? Well, I did try them. I tried three out of four of them. The two interferons made me feel like I had the flu all the time and the third non-interferon gave me site reactions that hurt for over an hour each day. “It can feel like a bee sting,” said the helpful company nurse, who called to “encourage” my “compliance” with my “chosen treatment plan.” 

Before you send me suggestions, yes I tried ice. I kept the gunk at room temperature for over half an hour before injection, I took Tylenol at least 20 minutes beforehand, and I even tried numbing spray. And that self-injector? Lots of fun with startle reflex.

I would try that particular med again, if I could get away from the needle. But nothing will make me try another interferon. Not even if I’m struck blind (again)!

Interferon-based meds are being sold to us as safe and effective. But interferon isn't safe! This isn't baby aspirin people, it's a heavy-duty chemotherapy. Read the side effects: It can cause depression, fatigue, liver problems, risk to pregnancy, allergic reactions, blood problems, heart problems, changes to your thyroid, big chunks of skin dying and falling off and seizures. Oh, and of course, feeling like you have the flu. Ha! Basically I had the flu for a year and a half.

The first time I tried an interferon I got every cold, flu and infection that came down the pike, from weird rashes to pink eye to pneumonia. ”Oh, I don’t think these meds can harm your immune system,” said my neurologist, when I brought it to his attention. ”Why don’t you give the drug rep a call and ask him." That was 10 years ago. Now, a decade later “blood problems’ are listed as a possible side-effect. One possible blood problem is your body may produce fewer white blood cells. Those are the cells that fight off infections like pneumonia. 

Did any of these “treatments” help slow down my MS? Heck if I know. I still get symptoms and they still eventually go away. Some go away more-so than others. Whatever. …   

You want to hear the funny thing? The very next huge exacerbation I have I bet I run to the nearest neurologist begging for IV-administered Tysabri, which, even more powerful than the CRABs, has been directly linked to severe disability and death. Is that med also worse than the disease? Probably. But I’ll be in line with my arm held out for the needle because, like most people, when I’m hurt and scared I’m quite vulnerable.

I too have failed on all of the CRAB's meds and am now on Tysabri. I look at it as a relaxing was to spend 2 hours by myself. Try and remember that attitude is 90% of the battle. FInd something that you enjoy doing and do it. Like I tell people all the time, I have MS but it doesn't have me! Diagnosed June 1994. I refuse to lose!

You mentioned that you "still get symptom and they still eventually go away." That great. For me, I was diagnosed in late August, 1997 3 months after I could no longer walk. I was told that within 6 months I would never get out of bed again. I choose to go on Betaseron. I used it for over 7 years. I was to start Tysabri two days after it was pulled off the market. I spent a year on Rebif and I am finally on Tysabri. Tysabri treatment has been the best for me. I can now flex my right angle for the first time in 4 years and transfers are easier. Remember MS is not the common cold. Letting it run its course is NOT a good idea.

I have read a lot of hogwash in my days but yours tops all that I can remember. If you wish to risk you life, as you know it today, that's fine. But to spread your twisted view of the facts is irresponsible. First the human body produces interferon. Dr. Yasuhiko Kojima discovered interferon in 1954. He found that interferon helps protects the bodies immune system. He also found that people with weakened immune systems produced less interferon.

Of the ABCR drugs, three are interferon based. Avonex and Rebif are based on interferon-1a and Betaseron on interferon-1b. The 1a and 1b signify how closely the interferon matches the body's natural interferon. Interferon-1a is a closer match than is interferon-1b. Yes most people will experience flu like symptoms. However, for most people the flu like symptoms taper off and end within a flew months.

You imply people should not take one of the ABCR drug until after "their very next huge exacerbation." You say the ABCR drugs are not like "baby aspirin." That true, however aspirin can cause ulcers, decreased blood platelets and white blood cells, and even life threatening allergic reactions. Not taking one of the ABCR drugs is like playing Russian Roulette with all but one chamber loaded. Blogs like yours do more harm than good