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Old 05-12-2008, 10:03 AM #1
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Default Starting Avonex today... any advice?

Good morning!

I'm starting Avonex this afternoon, and I'm finding myself getting really apprehensive. Does anyone have any advice on managing the side effects that aren't listed in the brochure? Also, I have a date for a concert on Thursday... and I'm worried that I won't be feeling up to it. Is there anything that I can do to mask the effects for the evening? Energy drinks, advil, etc? Am I just being naive?

On a side note, speaking of dates... does anyone have any fabulous advice for how long to wait to tell someone you're dating that you have MS?

I'm mildly affected by my MS right now, so it's hard to swallow the fact that I'm going to be deliberately giving myself the "MS flu" several days a week, in exchange for a slowing of a disease that isn't even really affecting me right now (although I have 30+ brain lesions). Logically, I know that it is the right thing to do, but it's just so abstract. Grrrrrr! This is tough stuff to deal with.

Any advice from you fabulous MS veterans have for me would be greatly appreciated! Thanks!
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Old 05-12-2008, 10:26 AM #2
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Moose has been on Avonex for close to 3 years now. I like it. Was on Rebif before... I like the Avonex much better. The needle is even thinner, so you barely feel it.

Premedicate a half hour or so before the shot. I do 800mg of ibuprofen. But find the right one for you, as some of these pills can mess your stomach up.

My first Avonex definitely gave me the flu like symptons. Shakes, achy all over and spiked a pretty good fever. Only lasted about a day. These tapered off over time and it's no longer an issue. I also take the shot just as I'm going to bed at night, so I sleep through anything that may creep up.

Can you or have you been instructions to work your way up to the full dose? Maybe just half today. 3/4 next week. Full dose the next week?

Now... telling your date... I've always found subliminal messages a key in this regard.

"Wow. You look really nice".
"Thanks. You can't tell I have MS can you?"
So what did you have in mind for dinner. I was thinking "Greek"...
"Greek's OK. It's OK that I have MS, too.
"Great. I know a really good place."
"Then it's settled... Greek it is!" No, MS isn't contagious. So you can kiss me goodnight later.

Then throw 'em a curve with "I love this song!" And then you turn up the radio.

But that's just me.
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Old 05-12-2008, 10:40 AM #3
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Quote:
Originally Posted by MooseasaurusRex View Post
Moose has been on Avonex for close to 3 years now. I like it. Was on Rebif before... I like the Avonex much better. The needle is even thinner, so you barely feel it.

Premedicate a half hour or so before the shot. I do 800mg of ibuprofen. But find the right one for you, as some of these pills can mess your stomach up.

My first Avonex definitely gave me the flu like symptons. Shakes, achy all over and spiked a pretty good fever. Only lasted about a day. These tapered off over time and it's no longer an issue. I also take the shot just as I'm going to bed at night, so I sleep through anything that may creep up.

Can you or have you been instructions to work your way up to the full dose? Maybe just half today. 3/4 next week. Full dose the next week?

Now... telling your date... I've always found subliminal messages a key in this regard.

"Wow. You look really nice".
"Thanks. You can't tell I have MS can you?"
So what did you have in mind for dinner. I was thinking "Greek"...
"Greek's OK. It's OK that I have MS, too.
"Great. I know a really good place."
"Then it's settled... Greek it is!" No, MS isn't contagious. So you can kiss me goodnight later.

Then throw 'em a curve with "I love this song!" And then you turn up the radio.

But that's just me.

Great advice, Moose! Especially on dating.
If I'm just sick for a day, that's something I can deal with. I like hearing that the side effects went away over time for you.
I have an email in to my doc, asking about starting slowly. I'm just hoping to hear back by this afternoon.
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just as soon as I get my head around this.

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Old 05-12-2008, 10:51 AM #4
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Yep. They don't hit as hard as time goes on. My understanding is the CRABS/DMDs are adding troops to the fight as to slow the progression of the disease. Less exacerbations with less intensity. It's something that will benefit us in the long run.

It took me awhile to get that, as my Rebif shots hurt. (Thicker gauge needle). And they were evey other day. Not bad mouthing the product, mind you. It just didn't work out for me.
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Old 05-12-2008, 11:17 AM #5
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Hi,
The best advice I can give is that you will most likely get used to doing the shots. Its just a part of my life now, like brushing my teeth. Wishing you the best. Jules
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Old 05-12-2008, 11:30 AM #6
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I was on A for 2 years and have now been on R for 3 years. I never had more than a day of side effects. Nothing that motrin couldn't handle. 800 mg was what was recommended to me. I took it before the shot, and then again the next morning. I might need one more late afternoon, but not usually.

I found that drinking a lot of water and exercising the next morning made the side effects much more manageable and they felt less severe.
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Old 05-12-2008, 11:34 AM #7
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I found that drinking a lot of water and exercising the next morning made the side effects much more manageable and they felt less severe.[/QUOTE]


I hadn't heard about the exercise - I'll certainly try it though. Thanks!!
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Old 05-12-2008, 01:44 PM #8
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I was on Avonex for 4 years. After the first couple shots the side effects were minimal. I was even able to work out the next day.

I really liked the once a week shot. The only thing that was a problem was it lowered my WBC too much and left me sick all winter long. I caught every cold or flu that came around.

I made sure to take the tylenol an hour before the shot and again 3 hours after the shot.

Good luck!
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Old 05-12-2008, 02:05 PM #9
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Quote:
Originally Posted by Rissa_TX View Post
I hadn't heard about the exercise - I'll certainly try it though. Thanks!!
I've never heard anyone else recommend it, but it sure made me feel better. Hope you have an easy time of adjusting to it!
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Old 05-12-2008, 08:43 PM #10
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I took my shot about 3 hours ago, and totally feel fine so far - here's hoping that it lasts!
Thank you all for your good wishes!
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Planning to be a "glass half full" kind of gal...
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