I just stopped taking Rebif, about two weeks. Before doing so, I talked to the nurses at MS Lifelines. I asked if I needed to taper off, if there was any issue with stopping. They said no, in terms of the drug itself, that it stays in your body for about two weeks and then is gone.

I have checked around and gotten various opinions. Some people say that immediately afterwards they have a flare, some say that they never noticed it and feel better, from one end of opinions to the other.

I have heard from people who were on Rebif and/or other drugs for a long time that within six months they have had flares, so that would make sense in that it is supposed to stop or slow progression and number of flares. But it is not a result of taking and stopping meds, it is MS being MS.

So the best I can tell is that, like MS, it is an individual thing and it is about your MS. But the thing I have heard over and over is that the meds themselves, stopping them, do not cause MS flares, that is, a flare is not from the meds. Again, as with all things MS, once you stop taking it, if you get a flare, you do not know if you would have gotten if you were still taking the meds or not.

I know, kind of rambling here, but I hope it made some kind of sense.

Why did you quit taking the rebif? And your ramble made perfect sense. Though I had an active lesion over the summer, I didn't experience any real symptoms other than the small day to day issues that come and go. Did not take any steroids and generally feel fine.

Well, lots of reasons. When I was first dxd, I looked into alot of other things, mercury poisoning, allergies, that kind of thing. Then I looked at the CRABs and picked Rebif, which my doc agreed with, so I started abotu six months after ON. I felt that before I knew as much as there was to know, I wanted to do something...you know? I felt like I didn't want to not do something that would help me be around longer, I felt like I had to do that, for my son if nothing else.

I was scared to even really do much on the computer about MS, I felt like someone would find out. But, obviously, I eventually I did starting looking, and talking and reading. I have been interested in LDN for a while...I am not totally convinced that it stops or slows progresion, but I aiways thought I would like to give it a try.

Okay, so after about 31/2 years, things were a little different. I was beginning to think that my doctor was right about disability, not because I was in a flare, but because what I did for a job was not working, and the things that were most valuable about my skills were being affected by MS, multi-tasking, problem solving, working long hours and maintaining order. I was really unable to manage my own time at all anymore. And I lost my balance and couldn't get it, so cracked my head open at work. I was stubborn though, and looked for a full time job, and looked full time, for about six months, even though I knew I was fooling myself. I applied for SSDI, but kept looking for work..I know...denial. I am lucky that I was never faced with the possiblity of taking a job I knew in my heart I would not be able to do, and I did tell all my friends in the business that I was looking for something "specific" so as to avoid that whole thing.

So I had COBRA through this past July. Meanwhile, my doc started talking Tysabri. It got me to thinking, or maybe just the change in her demeanor got me thinking, or both. Anyway, the cost was covered, and I could get it free once I lost the COBRA, but not the infusions. She is actually still trying to work that out for me even though I can no longer afford to see her. But it is like someone is willing to give me a car, but I have noway to fill it up with gas, and nobody gets that, or they just don't care. Their obligation is to supply the drug to needy patients, not make sure they can take it or get follow-up care, that being the other issue.

Then I started to experience some of the "rare" side effects, that was about March of this year. Then as I looked into it more, I discovered that maybe I had been hit with one or two more "rare" side effects along the way, just didn't know it then. So I just got to thinking..I haven't had a dramatic flare since 2005, but I have had a slow but steady "decline" I have had things come and go and come and not leave. Things that were no really an issue have become much more of one. So maybe no new lesions, maybe no big flares, but still more MS, that is for sure. I think the look on my doc's face anf the feeling I have inside are sort of telling me that I am in that gray place between SPMS and RRMS.

SSDI won't give me insurance for another year. I am going back into the County system. I will not have the same sort of call today-see someone tomorrow care. I know it sounds crazy, but I am more comfortable with no Rebif in that situation...I can go to the ER if there is a big problem, but for a "I think maybe something isn't so good.." not so much. When I had the bad reaction, I went right in, day after I called, and had tests run. And as far as the SSDI goes, I think that if I want to try LDN, now would make sense, I went off the "MS drugs" not because my MS is "better," but my insurance is gone, my options are limited. etc.

So after exactly five years I am letting it go for a while. I want ot know what's what, feel how my body feels without Rebif, see if my depression is different without Rebif, see if anything is different. I realize that Rebif, like the other CRABS, is an investment in the future, so to speak, but I am just needing to know exactly what the present is now, to re-evaluate, if that makes sense.

So that is the long and long of it. .