When to start Rebif?

A board to discuss the Multiple Sclerosis modifying drug Rebif

When to start Rebif?

Postby growing2boys » Fri Mar 12, 2010 10:47 am

Hello everyone,
I am new to this dx & site. I'm a 40yr mom to 2 preschool boys. Went in to have my appendix out 3 weeks ago- came out with the MS diagnosis a few days ago after a HORRIBLE hospital stay.

I am currently sick with a respiratory virus & having an "exacerbation". My weight has dropped 20 pounds in a month (I am down to 105 pounds). I was suffering from horrible constipation, so I stopped eating solid food.
My "exaxerbation" (sorry I keep putting that in quotes, but I still have trouble accepting all this...need a few more days? ) symptoms are: weak, non co-ordinated legs right worse then left, facial numbness, righ arm numb, abdomen completely numb & barely functioning, spastic bladder, severe fatique, blurred vision- was told I had brain lesions, but NO spine lesions so I don't understand all the symptoms?

My question.... should I start the Rebif now when I am so run down already or wait for when (if) get some health/stregnth back?

While I understand Rebif does not improve symptoms doing nothing during this deterioration is leaving me & hubby with a feeling of being completely at the mercy of the disease. We haven't even been able to get into a nuerologist yet- we were just sent home with directions to start Rebif. We don't even know if I have a progressive form or another type. We don't know if this is going to get worse, better, stay the same....I guess that's the disease though hey?

Thanks for any advice
Sarah
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Postby patientx » Fri Mar 12, 2010 1:49 pm

Hi Sarah,

Sounds like you're having a rough go of it. I don't think there's too much harm in waiting a little while before starting the Rebif. The DMDs are meant to be long term treatments to try and treat the MS - you're right, they won't do too much for the immediate symptoms. And they generally take a certain period of time to reach full strength.

I'm not personally on Rebif, but one of the side effects can be flu-like symptoms. So, if you're already feeling crummy, it might be best to wait til you're feeling a little better before starting.

Besides, I would think you would want to see a neurologist before making any decisions- to get a more thorough work-up, second opinion, and better description of your medication options (i.e. there are others besides Rebif). I'm not sure how they could give you a firm diagnosis of MS in an emergency situation like that. And I'm really surprised they would recommend you start a treatment like Rebif without consulting a neurologist.

Of course, all of this is just my opinion, so take it for what it's worth.
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Postby alittletired » Fri Mar 12, 2010 3:43 pm

I think it would be safe to wait a bit as well.

When I started re-bif I wasn't in the middle of a relapse, but within a day or so, my body felt like I was having an attack. My legs were pretty weak.

I think in general rebif drains your energy, so you might want to wait til you feel a bit better. Just be prepared for the sluggish feeling afterwards.

Take care,
Chris
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Postby growing2boys » Fri Mar 12, 2010 7:06 pm

Thanks for the advice!

I saw a neurologist in the hospital, but he can't get me into his office until the end of this month. I called around & no appointments until May/June anywhere else. I live in a small town.
I have basically been scouring the internet the last few days becoming as educated as possible, trying not to be in a panic, waiting for this to pass.

I will wait out this cold/flu so I can inject the flu :)

Thanks again
Sarah
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Re: When to start Rebif?

Postby Bubba » Fri Mar 12, 2010 8:01 pm

growing2boys wrote: but I still have trouble accepting all this...need a few more days?

My question.... should I start the Rebif now when I am so run down already or wait for when (if) get some health/stregnth back?



Girlfriend....... It is going to take more than days to "accept" this and get over the shock. BUT, you'll still be the same person you were before the dx.

I am with patientx, no rush to start any meds. Consult your neuro first, then a possible second opinion. :D
w/m 44
The problem comes with the decision of weighing the unknown with the unknown.
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Postby patientx » Fri Mar 12, 2010 8:18 pm

growing2boys wrote:I will wait out this cold/flu so I can inject the flu :)

Thanks again
Sarah


Well, it may not be quite that bad. Bubba hasn't had the flu side effects from the Rebif (though I think that's from all the beer he drinks).

I don't doubt that you saw a neuro in the hospital. But things are different in a hospital setting (as you're probably aware), and MS is a pretty complicated disease to diagnose. And I hear ya about the long wait to get an appointment for a specialist (it's not just small towns). One tricked I learned is to check back for cancellations. In fact, when I made my first appointment with the neuro, I was shocked at the wait for an appointment. As a result, the scheduling person said she would call me if there were any appointments sooner due to cancellations.
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Postby growing2boys » Sat Mar 13, 2010 6:30 am

Thanks again for the advice....& the instruction to drink more beer :)

Good idea about waiting for a cancellation. I will try that route too.

I'm very glad I found this board!
Sarah
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Postby carolsue » Mon Mar 15, 2010 11:19 am

my heart goes out to you. hang in there. it more than likely will get a whole lot better.

some people don't react well to rebif. I guess if I were in your situation, I'd want to know if the most recent poison (er, I mean "drug") I was putting into my body was responsible for how awful I was feeling. I was feeling just fine, albeit pretty tired, when I first went on rebif (which I tolerate very well, thankfully).

but if lesions are active, the sooner they can be stopped, the better. when I was in the middle of an exacerbation, I went on intravenous steroids (solumedrol), which was supposed to shorten and lessen the severity of the exacerbation. are you on a steroid treatment right now?

good luck. sorry to welcome you to the site.
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