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Rebif to Copaxone.. Considering Changing Therapies

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Posted 5/8/2007 6:36 PM (GMT 0)
Hi Everyone!

 

It has been about a week since I posted.. I have just been ripping and running so much, that I haven't had a chance to stop by.

 

I do have a pressing concern, I am thinking of changing my drug therapy. I wad dx (8/06) and started Rebif (9/06).  I have experienced many of the side effects, so far the flu like symptoms have subsided but I do have more fatigue than usual on my shot days.  My main reason for wanting to change therapies is concern over long term safety.  With Rebif I have to have regular blood tests to check my blood cell counts and liver function, since Rebif has been associated with liver injury by some users.  Every month since I started Rebif my white blood cell counts have dropped continously.  I also have yet to experience the benefit of longer periods in between relapses, I don't know how long that will take to materialize and none my doctors have been really clear about that.  At first they said give it 6 months, this is month 8 and I am worse off physically now than before I started taking it, having back to back excaberations lasting anywhere from 6 weeks to 3 months.

 

So I would like to get some feedback on this.  Is anyone else on Rebif, has anyone changed therapies and why?

 

Thanks so much.

 

Steph aka ButterflyDoodle

Posted 5/8/2007 6:47 PM (GMT 0)
You really need to talk with your doctor. Often the liver problems resolve themselves. I had blood tests every 3 months for the first year, then twice a year, then once a year...and now, never.

I don't think there is any set time to see if there is a decrease in exacerbations, which is why the doctors are being vague. They usually like for folks to stay on a therapy for at least a year before switching, but if your doctor is ok with you switching to Copaxone, you might try it. You could always switch back.
Posted 5/8/2007 6:53 PM (GMT 0)
I did mention it to him a few weeks ago and he was really carefree about it, said he would do whatever I wanted, never commented on anything about my request other than that.  I asked for his opinion on the differenes/benefits between the medications and he didn't comment at all, just said if I wanted to change he would change it, that is why I really wanted to get some feedback to see what others' experiences have been. I have only seen my neuro twice since January,  I was with Sutter Healthcare then switched over to Kaiser so I could afford my meds and so don't have any real relationship established with this new doctor.  He is friendly but not very clear about anything, I feel like after talking to him I know less than before I went in to my appts.  Right now we communicate 98% of the time via email which I guess is good because his accent is soooo strong that I barely make out what he says in conversation and have to often ask him to repeat.

 

 

 

Posted 5/8/2007 11:06 PM (GMT 0)

Steph,

It must be so frustrating to not receive more guidance from your neuro with this kind of big decision. I have never taken Rebif, and am a relative newbie to both MS and Copaxone, so am by no means an expert. However, I’d be happy to talk to you about my experience on Copaxone (started last November, all is still fresh in my mind, lol). I don’t know if that would help you at all in this decision, but just let me know…..

There are people on this board who are indeed on Rebif, so hopefully someone can provide you with some additional information.

 

By the way, I only live a few hours away from Sacramento. Maybe I need to come get one of those cookies you mentioned. I am a sucker for a good cookie. J

Sunny

 

Posted 5/10/2007 2:32 AM (GMT 0)
Well my neuro without discussing it.. cancelled my Rebif RX and orderd Copaxone.  He sent me email to tell me to pick it up.  I wasn't expecting that, I thought we were going to talk about it.  I didn't find this out till I went into the pharmacy to get the Rebif and they told me they only had Copaxone for me.


I emailed my doctor saying that I would have liked to seen him for an appt to discuss changing therapies in greater detail and explained to him that I don't really feel his is addressing/answering my questions and concerns about relapses and therapy.  He finally responded and said that he agreed and he wants to see me when he comes back from vacation but that won't be till 5/21 so that means I will be off therapy for 2 weeks.  I don't know how I feel about that but at this point I don't really have a choice. 

I have the Copax sitting in my fridge right now that I picked up today but will just wait until I talk to him to move forward.

This is a frustrating time very frustrating. I keep telling the Lord thank you that MS is "liveable" "manageable" and not terminal.. I am grateful for that, I know I could be worse off. I just want to move out of this emotional valley I seem to have fallen into within the past couple of weeks about MS.  It just seems to have burdened me more now than it ever has in the 7 months since my diagnosis.  But I am a fighter, and God is on my side ... I am determined to get through this. 

 

Posted 5/10/2007 9:34 AM (GMT 0)

ButterflyDoodle said...

This is a frustrating time very frustrating. I keep telling the Lord thank you that MS is "liveable" "manageable" and not terminal.. I am grateful for that, I know I could be worse off. I just want to move out of this emotional valley I seem to have fallen into within the past couple of weeks about MS.  It just seems to have burdened me more now than it ever has in the 7 months since my diagnosis.  But I am a fighter, and God is on my side ... I am determined to get through this. 

Wow, you spoke what I have been thinking.  I was diagnosed just over a year ago, and reality seems to hit me in phases,  pretty much everytime I realize I have new limits.  Like speaking with my sister... she walked 13km the other day and I realized I can't.

Yes, we can and will get through this.  I guess if for no other reason than we don't have a choice!  :-)

Hang in there,

Shar

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