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    Old 05-17-2008, 03:40 AM   #1
    april1848
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    Avonex Side-Effectss

    I am half asleep as I'm writing this.

    I'm approaching Month 7 of Avonex injections. I still get sick, but up until two weeks ago I've been able to sleep thru the worst of it. Last week and this week were different.

    Last night I woke up at 2 something because of the chills--read: seizures. They were terrible. Husband helped me to the bathroom because it's hard to walk when you're seizing, just like last Friday. I'm not really seizing, that's just what these horrible chills feel like!

    Then I got back in bed and he wrapped himself around me like a strait jacket to try to warm me up. He stopped the major seizing that way, but my muscles were still seizing "internally". I hope that makes sense. I fell asleep eventually, and before I woke up 20 minutes ago I was having a dream that I was in a pharmacy getting a Copaxone injection. If I wasn't feeling so bad, I'd laugh at that. What an easy dream to interpret, and only an MS patient would dream of a pharmacy!

    My question is this: is this normal, should I be concerned? I do everything I'm supposed to regarding the injection. The gallons of water and gatorade, pre and post medicating, taking the shot out of the fridge several hours before. I make sure I eat well the day of the injection. Before I go to bed, I take 2 Klonopin to help me sleep thru the worst of the symptoms. For the past two weeks, it's not working.

    Is there something wrong with me, and is it time to try a new DMD? I just drank a gallon of gatorade and had four motrins, and I have a low fever. I have been exercising lately, but now that my muscles are exercising themselves, what's the point? Muscles I didn't even know I had are sore from my seizure last nite. Any advice?
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    Old 05-17-2008, 05:31 AM   #2
    glamour girl
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    Re: Avonex Side-Effectss

    Hi April...

    My godness i feel yr pain. I'm also on Avonex. I had a post on this " Such a ****" about 3 weeks ago. I had the exact same thing happen to me. Only thing is silly me. THOUGHT i took my pre med Aleve? Naprosyn tablet. Which i religiously take b4 i inject. I had those tremours through the night . had a doona, hot heat bag and hubby rubbing my body down till i fell asleep.. I was sore for a couple of days, because of the tension in my body.
    I used to get the chills and shakes still with just plain Panadol.. Did nothing but made me feel sick. Thanks to one of my Angels here ( NIKKI) she was the one i try Aleve.. Haven't looked back. Now my hubby makes sure i take it.
    Maybe give that a go. If nothing is working for you. I'd be talking to my Neuro.
    Please let us know how you go next week. Take care

     
    Old 05-17-2008, 07:10 AM   #3
    Nenu
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    Re: Avonex Side-Effectss

    Quote:
    Originally Posted by april1848 View Post
    What an easy dream to interpret, and only an MS patient would dream of a pharmacy!
    Indeed April, indeed!
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    Old 05-17-2008, 08:28 AM   #4
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    Re: Avonex Side-Effectss

    April, the side effects you are describing are not uncommon to happen now and then- and get this- especially when the body is already run down or fighting something off (and in your case, its possible that its also the nerves and the stress youve been under in the past week with the interviews talking)- but it shouldnt continue to happen..

    When is your next MRI scheduled? Although you have been on Avonex for around 7 months- it does take at least 6 months for it to buid up in your blood stream...very shortly, the side effects should be stopping for you..but more importantly, the docs usually order an MRI about this time, or in the next 3 months to see if there have been any changes on your films since starting the drug. WHen I hit 6 months with Rebif, I was SURE that it wasnt working, Id had a bad bout of ON during the first few months, was still feeling overall lousy- and was positive they were going to take me off of it. Imagine my surprise when I found out that there was absoltuely no new lesion activity on my MRI and that my doc felt it was working great for me,...I kept with it and by month 9, I was feeling terrific and 2 more MRIs later (both 6 months apart) I still have no new lesion activity.

    Ride this out and youre not doing anything wrong- give it a few more weeks and see if you dont feel any better...but call your Neuro if you dont, and you might call him anyway just to ask about MRIs- and when he feels it will be appropriate to get one to see if this is working...
    Hugs and feel better today.
    Nikki
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    Old 05-17-2008, 08:58 AM   #5
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    Re: Avonex Side-Effectss

    Thank you all. My next MRI is in July. I would really hate to switch meds at this point, because I really love the once a week thing and also no injection sites reactions. Maybe I will try Aleve again instead of motrin too.

    Also, I suspect the Avonex may be working, since I haven't had any attacks. My nurse thought I was having one in February and wanted me to come in for steroids, but I didn't, and the symptoms went away on their own. I actually feel pretty good--just not right now.

    For the past two weeks I've also been fighting an infection. I had half of a root canal two weeks ago and the rest of it this coming Tuesday. My dentist said the infection was pretty bad and I'm on Clindamycin for it. Maybe the infection plus stress of job hunting is just getting to me.

    Thank you all for your support!
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    dx 9/07
    Avonex started 11/07,
    Stopped 4/10 due to no insurance.

     
    Old 05-17-2008, 10:31 AM   #6
    MSNik
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    Re: Avonex Side-Effectss

    What you wrote about the infection is probably the cause..and Im glad to hear you have another MRI lined up in July...from what I can see, virtually, you are doing really well on Avonex..and I cant see them changing it for any reason unless there is activity that youre unaware of...but truthfully, I wouldnt think there would be- you know your body best and if you think that since Feb youve been in good shape, then you probably are! Worst case scenario, they could ask you to try Rebif, which is the exact same drug, but 3 times a week sub-cutaneously (under the skin) but you wouldnt have any additional side effects...its just the same drug- stronger. But dont start worrying about that..just try the Aleve. Because it lasts 12 hours and you only have to take one pill- it seems to really help more than motrin or advil or Tylenol...give it a shot, you have nothing to lose!
    Hugs
    N
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    Old 05-17-2008, 11:45 AM   #7
    april1848
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    Re: Avonex Side-Effectss

    I had no idea that an infection could do that. I know they could cause a relapse, but I didn't know it could make side-effects of interferon worse. And per my dentist, the infection was very bad.

    Thanks for telling me, and reassuring me. I was pretty scared last night, and when it happened last week. I really wondered if I was having a seizure, but Husband reassured me that it was just the chills. I'll try Aleve next week and pray it doesn't happen again. For my cat's sake too--I scared the heck out of her last night when she was sleeping with me!
    __________________
    April
    dx 9/07
    Avonex started 11/07,
    Stopped 4/10 due to no insurance.

     
    Old 05-17-2008, 08:31 PM   #8
    anxiousme
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    Re: Avonex Side-Effectss

    I take Avonex. However, I mix my injectable rather than getting prefilled syringes. My MS doc told me that some people have fewer side effects from the powder form. Maybe it's an additive in the prefilled. Anyways, I took his advice and started on the self-mix prescription. It's easy, takes slightly longer, but honestly the whole time I'm getting my setup ready, I'm icing my leg. then I take the ice off, use the alcohol rub. While the alcohol rub dries, I mix the Avonex and load it in the syringe, shot, and Done. I love it and I truly believe that the side effects are very tolerable. I take my shot at 5:00am Thurs mornings. Take 2 advil and head out the door for my day. Lucky!

     
    Old 05-18-2008, 05:36 AM   #9
    zaerobella
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    Re: Avonex Side-Effectss

    I have no idea how you guys do it!

    I took Avonex for a short while and wanted to throw myself off the bridge. I was so sick 24 hours after the shot!

     
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