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Not only do I hate the injections, the reactions are killing me!

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Posted 2/1/2007 4:48 AM (GMT 0)
I don't want to scare any of the newbies but i have to vent.  I'm writing this with the Avonex flu.  I didn't take last weeks shot due to surgery and had my shot tonight.  I have been taking 800 mg. of ibuprofen 3x day since Tues. I took a dose at 3pm and then at 9 pm, and I have all the horrid side effects as usual.  My head feels as if my skull is going to come apart, every joint that normally bothers me is screaming, I have ice water running through my veins, chills and a fever already of over 101.  This has been going on for 13 months now.

 

I know I shouldn't give up but that is what I'm leaning towards.  I don't want to try the Copaxone my neuro does not feel it will help me at this stage of MS. Also, I know i wouldn't take the shot every day.

Thanks for letting me vent.

Posted 2/1/2007 5:02 AM (GMT 0)
Awww Michelle, i'm sorry. No one should be as sick as u are and for so long. I think in u'r position i'd be leaning towards not taking them either, but what are u'r options? How does u'r doc feel? Are u experiencing as many flares? Are the cons really outweighing the pros enuf? I don't know how to look at this without any experience, but i've seen u'r sick for so long and sooo sick...seems awefully hard to justify. My heart goes out to u. I wish so much i could help.
Posted 2/1/2007 12:47 PM (GMT 0)

I'm sorry you're still having such problems with the Avonex.  You might inquire about trying one of the other interferons...like a lot of the meds, some folks do well on one but not on another.  I can't offer any ideas about the Copaxone'; I haven't studied much about it.  But you might talk with your doctor again and see if that isn't a possibility.  Folks seem to have very few side effects with it.

Posted 2/1/2007 5:26 PM (GMT 0)
Michelle I am sending hugs to you. So sorry you're feeling so bad. I was sick for 2 weeks and didn't do any shots, when I did I did my full dose of course and WHAM I paid dearly for 3 days with my joints sreaming at me along with every other part of my body so I know how you feel. I almost stopped the injections all to gether. I went down to my starting dose and worked my way up again but it still feels like razors going into my body. Sometimes I still feel like giving up.

I am not familuiar with any of the other meds but just to let you know I am thinking and praying things get better for you.
Posted 2/1/2007 11:28 PM (GMT 0)
Aww I'm sorry Michelle, I know how hard these shots have been on you.  And I also know your feelings towards Copaxone so I won't go there :-) Have you discussed one of the alternatives with your doc?  Do you feel Tysabri or Navantrone might be a good option for you at this point? 
Posted 2/19/2007 9:26 AM (GMT 0)
Hi Michelle,

Sorry for the late post, but guess I missed yours. I've been on Copaxone since January 2nd and I love it. The most I have is injection site reactions, but NO SIDE EFFECTS. I also considered the Avenox but coudn't afford to be sick that long. I've got to work! I have a MAJOR fear of needs and was recommended to a site called Shared Solutions. They are awesome. They have this product that your doc writes you a rx for and i'ts free. I've got Kaiser and they worked directly with Shared Solutions. I have an Autoject 2 pen that's wonderful! The thought of even looking at a needle every single day makes me ill. The avenox is a bigger needle (trust me I've researched them both throughly) and deciced that as long as I don't see the needle going in (and it's much smaller) I could do it myself. That was the decision for me. I didn't want to depend on someone having to give me my injecdtion every week, especially with a bigger and longer needle that I would have to see!! NO THANK YOU! Check out the Shared Solutions website and see if they can assist you. They've been awesome. The autoject2 pen is the only thing that I feel would keep me doing this every day. It's almost painless. You barely feel it when it goes it. For me to say that, TRUST ME it must be good!! I'll be praying for you. Let me know how it goes.
Posted 2/19/2007 5:41 PM (GMT 0)

Hi Michelle, I am so very sorry that your having a hard time on the Avonex.  Are you still taking it?  I know my reply here is late... eyes   Avonex was the first medication I took when I was diagnosed with MS in 2001.  I was on it for almost 2 years and had some pretty negative side effects with it...fever for several days, chills, sick to my stomach, extreme fatigue and body aches.  It got to the point with me that the side effects were lasting for 3-4 days and with having to take the shot every 7 days there was only a handful of days out of the week that I felt okay.  Ibuprofen and Tylenol wasnt much help at all and I was struggling to make it through a work week.  My neurologist kept saying to stick with it that the side effects would wear off the longer that your on it but I wasnt seeing a pattern to them wearing down.  So, I quit taking it and stayed off any injectable meds for a yr and half.  Turned out that was a mistake for me as I developed 4 more lesions...I dont know they could of come with or without the meds but it pushed me to get back on an injection med.  I take Copaxone and have for almost 2 yrs now with little to no side effects.  I do think the class of interferons are most likely the better working meds but I am too afraid to try any of them because of my experiance with Avonex.  Take care

Posted 2/19/2007 9:00 PM (GMT 0)
Hi all,

Thanks so much for your posts!  My neuro is aware of my continuing troubles but she wants me to stick with it for now.  I will see her the end of March.  Last week I took klonopin and tylenol and slept thru the night.  I'll try it again this week.  I had the bad headache and fatigue and fever but if I had chills I wasn't aware of them. 

 

I think she wants to add something to it because of the secondary diagnosis but not Imuran since I had liver damage from that.  I may just stick it out until the tysabri looks great!

 

Thanks again!  :)

Posted 2/21/2007 1:30 AM (GMT 0)
Michelle,
I have te same AWFUL side effects nad it has made me feel the same way. I just don't get why some people have them and others don't? I take it right b4 bed and try to sleep through the worst part but the next day is bad too.... I guess this does nto hel, just lettingyou know someone is rigth there with you!!! Do it for as long as you can, I know how had it is......
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