Nov 212005

Β and I don’t like any of them. OK, so that’s a bit of an exaggeration, I kinda liked the Sharpie sniffing (but it was awkward going around with my black-tipped nose) – unfortunately it didn’t help much with the MS. Also, I haven’t tried LDN nor Mannatech’s Ambrotose. πŸ˜‰

I guess the bottom line is that I am growing tired of the Rebif injections. The big problem is that I am doing so well. Yeah, I have the occasional exacerbation, but they have all been relatively minor. Lately, I have been averaging about 2 injections per week up until about a month ago. I am now averaging about 1 injection per week, and I just took off an entire week (a new record and with no ill Rebif effects). I suppose I am doing well as far as the 18 month mark when a lot of people quit (I am at 28 months). I do wonder if the Rebif is helping or if I just am in a lull. I’m not quite ready to quit, though it is growing increasingly hard to take. Hopefully there will be a good oral medication available soon.

  12 Responses to “I’ve Tried Everything for MS…”

  1. Ha! That is hilarious. The picturing demonstrating the new MS treatment was a nice touch!

    So I thought you were perscribed a certain number of times you take the TNFbetas- a certain number of times/week depending on the brand. Does your Dr. tell you to change how often you take it?

  2. Thanks! πŸ˜‰

    I am prescribed the normal 3x per week of the Rebif. The doctor certainly hasn’t changed the prescription. It is just growing increasingly difficult to muster the energy to take the injection.

  3. Nice pic! Your doctor is okay with you augmenting the Rebif regiment? Isn’t that limiting its effectiveness Erik? I was curious about the difficulties you are having as you mentioned they are ‘increasingly hard to take’? I’ve been on them for 2 years now and it has become part of the bedtime routine, even with my numb hands! Glad to hear you are doing well and I second you on the oral medication!

  4. SinnerSaint,
    He’s probably not real keen on the Sharpie treatment! πŸ˜‰

    It was long part of my ritual, but I’m just getting weary now. Of course I may get weary of a pill too, it just seems so much better right now! πŸ˜‰

  5. No, I’m waiting for a ‘patch’ solution.

  6. Hmmm, patch. Makes me think of birth control. Since taking evening primrose oil already makes me feel a little girly (its typically being used for the monthly not-so-happy time) I can’t imagine that will help. πŸ˜‰

  7. The Patch ain’t all that. Trust me I am on it. It can fall off (note to users don’t wear on areas that get sweaty), it gets caught on my clothes because the edges are sticky, can come off with clothes, you forget to replace it (like I do lately), people always ask me what it is (and then feel stupid after I tell them), it leaves a red rash sometimes it lasts weeks.

    OK so maybe it is pretty convenient but it has it’s downsides too.

    Erik I know what you feel about the shot. I too find myself not wanting to take it. It’s harder and harder each week to force myself to do it. I don’t think it will ever be routine for me because its an awful reminder and I don’t see the good effects of it clearly like my other drugs. My brain on the other hand knows I need to take it.

    Maybe they can come up with a sniffing solution?

  8. Do you guys have your antibodies to the TNF beta measured at all? That’s what concerning me lately. If you take a TNF beta for a few years some people start to make antibodies to it. So TNF beta is already low, but then you make antibodies so it is even lower- in the end it could make you worse off. I guess that is why the TNF betas are only effective for a certain period of time.

    I was reading how they are developing an antibody for an interleukin that stimulates TNF gamma. TNF gamma is the bad TNF that activates the T cells that attack the myelin- so injecting yourself with antibodies to it would be good both short term and long term.

  9. Beth,
    Yes, I’ve had mine measured (recently) and they are virtually non-existant. [Unfortunally, it is an expensive test that is usually not covered by insurance.]

    On the other hand supposedly even if you develop NAB’s they typically disappear after a couple of years – or at least so I thought. Secondarily, isn’t that part of the reason that the TNF is packaged in/with human Albumin so the body doesn’t react against it? Last, I throught the impact of NAB’s was questionable. Most of the research comes from the drug companies with a vested interest towards a specific outcome.

    In my experience, a Dr. typically does not test for NAB unless the patient stops doing so well on the interferon and wants to see if NAB’s are a cause.

  10. Carrie,
    I know I’m far from being alone in my difficulties taking an injection. It’s hard to believe that not all that long ago I was pretty gung-ho and would never settle for something less effective. Now I am pretty sure I would settle for lesser if it was an oral medication.

    That’s perfectly my point about the patch. My fear would be that people would think that I was on some birth control medication! πŸ˜‰

  11. Hey Erik! I’ve been reading for a few weeks now. Do not have MS, so I won’t even begin to say I understand this disease or what it does to you. But you and Beth and reading your blogs are giving me insight. Basically haven’t had anything productive to say, so I just read :o)

    I agree with Carrie with the patch not being all that. It was annoying, and while it didn’t fall off – it certainly bothered the heck out of me. Come to find out there’s now an increased risk of Stroke for patch users – you end up absorbing more estrogen into the bloodstream… did they really not think of this? Wow. So new delivery methods of the same stuff cause new angles to look at things. But, for what it’s worth – I’m hoping for a less stressful delivery system for you guys.

  12. Yeah, IFNbeta isn’t supposed to stimulate antibody production- I assume it is engineered to be human IFNbeta. The thing about antibodies is that once they are made you keep a certain population of B cells around that remember how to make that antibody (also called memory cells). The actual amount of the antibody may fall after you stop taking it, but once you start taking it again your B cells will be activated and start dividing and produce more antibodies. I’m certainly not an immunologist, and yeah I agree the antibody thing is sketchy- I’ll have to look around more.

    Glad your antibodies for it are low.

    Have a great thanksgiving

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