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-   -   New Here - LuvSunflowers (https://www.neurotalk.org/multiple-sclerosis/125259-luvsunflowers.html)

LuvSunflowers 06-16-2010 06:34 PM

New Here
 
Hi,
I was diagnosed last July 15. I cannot believe it has been a year already. I had double vision. Mid Sept. I started Rebif. However, due to a decreased white count I was only on the full dose for a month. I have been on the 22mcg dose. I have not had a relapse since last July. My white count is starting to drop on the 22mcg dose, so I am seriously considering stopping the Rebif. If I had to do it all over again, I don't think that I would have allowed the doctors to talk me into starting a DMD. Personally, I believe that not having a relapse over the last year had nothing to do with the 22mcg dose of Rebif. When I first started Rebif, I did a slower titration over 4 months and one of my doctors told me that I really needed to get on the full dose so that I would not relapse. Now that I can't take the full dose, I am told that 22.2mcg also works, too. It can be confusing. I don't want to go on Copoxone due to the IPIR reaction. I live alone in a very rural area. During the winter, it can be difficult to get out, so if I needed 911, it could be a problem. Anyway, I am interested in hearing other opinions about this. Looking forward to meeting others.

Jomar 06-17-2010 11:47 AM

Bumping up for new member.

Kitty 06-17-2010 12:12 PM

Hi Sunflowers! Welcome to NT!

I was on a couple of the DMD's when I was first diagnosed. They made me feel worse than I already did. BTW.....double vision was my symptom that got me diagnosed, too.

Have you considered LDN? I've been on it for a couple of years and it's been a Godsend. Here is a link to the LDN thread here........http://neurotalk.psychcentral.com/thread71392.html

barb02 06-17-2010 01:05 PM

Welcome Sunflowers. I am not sure how to respond regarding the rebif issue. I guess I would stay on it as long as I could tolerate it. What does your doctor say about your blood count?

SallyC 06-17-2010 01:52 PM

Welcome again, Luv. :hug:

Dejibo 06-17-2010 03:29 PM

Hello and Welcome! :hug:

NurseNancy 06-17-2010 03:39 PM

hello and welcome,

i don't know anything about rebif. i've been on copaxone for 7 yrs without incident. i've been stable too, something my neuro didn't expect.

everyone has a different opinion on DMD's and makes their decision given their own circumstances. that said however, my personal opinion is that MS is always there lurking. just when you may not expect it will rear up. it doesn't go away, it's not curable, it doesn't resolve.

some people go a long time without sx's but my feeling is that you're always at risk to have a flare.

i know many others don't agree with me, but there's my opinion based upon my readings.

good to have you here. please keep us posted.

LuvSunflowers 06-17-2010 04:40 PM

Thanks everyone for your welcome. I've heard of LDN, but I don't have any symptoms, so I am not sure if it would be of any help to me.

As far as the Rebif, I really don't think that it is worth risking damaging my bone marrow permanently for the small possibility that it may help me 30%.

It's confusing. I am only on 1/2 dose and personally I feel as though it's working more as a placebo. My doctors scared me so much in the beginning that now I am afraid to stop it.

Debbie D 06-17-2010 04:51 PM

Welcome to NT!!
First, sorry you are here...because that means you share our yucky disease:(

Lots of info here...I was on Copaxone for over a year before I decided with my neuro to take a holiday...I never had a strong reaction...but my symptoms did increase, so we're going to do an mri next week to see if I have more damage before deciding what to do.

I'm sure you've done the research on all of the meds...you have to do what you think is best for you, after going over your mri and your symptoms. You are the quarterback, and your doc is your coach...

Keep us informed of what's going on...and again, welcome1:)

Aarcyn 06-17-2010 06:39 PM

Welcome Sun. Never happy to see anyone with MS.

I was on Rebif. No problems but that was me and this is you.

As far as DMD's go, using one is subjective. I think the efficacy of the drug is about 30%. So that means there is a 70% chance of a relapse. At least, that is my take on it.

I don't use any DMD's. I was dx'ed as PPMS after a year and my ms doc said using one is like shooting water.

Rebif has a good 800 number to contact. They want your money so you can always talk about it to their people. Half dose is probably not worth the money spent and your concerns are more valid.

MS and stress go together! So do what is least stressful.:)


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