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Copaxone & Hives or Bad Reactions


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Old 07-31-2008, 03:01 PM   #31
april1848
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Re: Copaxone & Hives or Bad Reactions

Hi Shelly! I was given a script for Neurontin last week for my other leg symptoms, and ironically the itching started a few days later. I haven't filled it yet though--I'm worried that it will make me more tired. I'm going to try and sit this out, but I'll definitely be headed to the drugstore if it doesn't go away soon! The itching has left my calves for the most part and went up to my thighs. UGH!

I know Avonex is scary, but it might be totally worth it for you. I'm glad I waited it out now that the side effects are so minimal. I had some very dark days, believe me, and that was when I came here. Keep us updated on how you do! Hopefully you'll be one of those people who barely get sick, or where the side effects only last a few weeks. You'll never know unless you try!
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Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
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Old 08-01-2008, 10:26 AM   #32
Shelly7630
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Re: Copaxone & Hives or Bad Reactions

I hope so April and I will keep you posted. Nueronton does not make me tired and perhaps it will be okay for you. Did you get 100 mg 3x's a day? It is really a good drug for that phantom itching and nerve pain.

 
Old 08-02-2008, 10:12 AM   #33
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Re: Copaxone & Hives or Bad Reactions

Hi Shelly. My MS nurse prescribed 100 mg three times a day to start out with for the first two weeks, and that's what she wrote the script for. She told me to call her after the two weeks and if I was tolerating it well, she would write me a new script for a higher dosage. I told her I wasn't quite sure if I would try it. So far I haven't, but this itching and other sensory symptoms are driving me nuts! But I know a lot of people who take Neurontin, and for many of them it causes extreme fatigue and a feeling of being drunk. I'm kind of on the fence about this.

Another reason I didn't want to start it is that I have a 3.000.00 deductible on my insurance and I don't want to pay for it. I'm paying a lot of money monthly for Avonex and other meds I'm on already. I'm wondering if I should start another older, cheaper med like amitryptiline first. I really don't want to start any new meds, but if these symptoms in my legs continue, I won't have a choice.

I'm glad to know it works for you though, that gives me some hope! By the way, I'm recovering from an Avonex injection night. I woke up with a terrible headache but I feel fine now, except fatigue, but I did stay up late too. Do you know when you'll be starting Avonex? They'll send a nurse to your house to show you how to inject. I'm too much of a wuss to inject myself yet, although I know I have to do it eventually, and I'm starting to feel more ready now. I think I will be injecting myself soon. I just found out that my grandmother has a friend with MS. He's had it for over 20 years, and he still can't inject himself, so he goes to his doctor once a week to get it. I'm glad I'm not alone in that!
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dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 08-02-2008, 12:28 PM   #34
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Re: Copaxone & Hives or Bad Reactions

Just going to jump in here and add my first 'unusual' or abnormal reaction to Copaxone has happened. Nothing major, but something I noted to call SS and tell them about for their records.

I did my shot Thursday (above the behind) and noticed that afterwards the area around was all red (about 2 inches across). I didn't think much of it. Then I noticed 24 hours later, it was still itchy. The red was still around the site (not the pin point of the injection, spread out from the center kinda). I did my Friday injection (other side, above the behind) and similar event. Itchy afterwards, into Saturday.

The itch from Thursday is finally calming down, the itch from Friday is still there now, and my tummy shot was today (Saturday) so we'll see how that one turns out.

I did put Polysporin on the sites 24 hours later where it was itchy, so I'm not sure if that was helpful. I could not tell if any infection at all was involved, and the areas were both very clean (alcohol swab) and hands washed. What can you do?

Like I said, nothing major, but something I have not noted in the past either.
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Old 08-03-2008, 05:47 PM   #35
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Re: Copaxone & Hives or Bad Reactions

Shelly, I just wanted to let you know that I recently saw other people talking about having a similar allergic reaction. Copaxone seems to not present a problem for many people and although this definitely seems more rare but I wanted to let you know that you're definitely not alone!
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Last edited by Bearygood; 08-03-2008 at 05:48 PM.

 
Old 08-04-2008, 09:38 AM   #36
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Re: Copaxone & Hives or Bad Reactions

Hi April, I understand about the meds. cost. Insurance issues are huge! amitryptiline is a good drug also. I used to take it before bed. Funny you mentioned Neuronton making some feel as if they are drunk...I have taken it for YEARS and all of a sudden, I took it the other day and felt like I was drunk....out of it. Must be another strange reaction like I have been having lately. I have elected not to take it unless I really need it. I have yet to hear about the Avonex, they are susposed to call me this week with a date to ship and send the nurse. I' am still not 100 percent I will follow through with it. I was convinced till I started reading about more people with the flu like reactions. I' am not sure I'am willing to deal with it April. SO sorry you had a bad weekend with it and I hope you are feeling better today. I have been feeling pretty decent and the thought of taking something that will make me sick is not going over well with me. I have to do some real soul searching and weigh the options...there is no cure for MS...Avonex is not a guarantee against relaspe...etc., etc,...I'am sure you have thought the same. Anyhow, I will keep you posted. Sorry to hear about your Grandma's friend. You hear about so many more people with MS nowadays. As far as the injecting, I' am not looking forward to that either, althougth needles do not bother me. Anyhow, let me know how the itching is going and what you have decided to do. I wish you the best April.

 
Old 08-04-2008, 09:48 AM   #37
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Re: Copaxone & Hives or Bad Reactions

Hi, Sorry to hear about your reaction. I have always had the itching after injection...for a short period of time only...about 30 minutes. I wonder if perhaps you dripped some of the med. on your skin? Or did not inject deep enough? Calling SS was the best thing to do. Let me know what they said and I hope you are back to feeling better today.

 
Old 08-04-2008, 09:51 AM   #38
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Re: Copaxone & Hives or Bad Reactions

Quote:
Originally Posted by Shelly7630 View Post
Hi, Sorry to hear about your reaction. I have always had the itching after injection...for a short period of time only...about 30 minutes. I wonder if perhaps you dripped some of the med. on your skin? Or did not inject deep enough? Calling SS was the best thing to do. Let me know what they said and I hope you are back to feeling better today.
Yeah, you could be right. That's a tricky spot to get to lol! Meds could have dripped absolutely.

Tummy and arm shots Sat and Sun were fine.
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Old 08-04-2008, 09:53 AM   #39
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Re: Copaxone & Hives or Bad Reactions

Thanks so much! Did you read about that kind of reaction on these boards? I tracked down a site that was dedicated to copaxone reactions that was written in a statistic format. Not to many people had a severe reaction. SS called me last week and actually told me I should reconsider using the medicine in two weeks, that I would probaly not have another reaction. I declined of course! (as did my Doc.) I was rather shocked SS suggested that. I hoe all is well with you!

 
Old 08-04-2008, 09:55 AM   #40
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Re: Copaxone & Hives or Bad Reactions

GREAT! So, glad that it is better for you. Yes, some spots are a bit tricky to say the least! I used to get the worse itching from my tummy shots, which was unusual. The front thighs where my best sites and I couldn't wait till I got to rotate to them. Did SS call you?

 
Old 08-04-2008, 09:57 AM   #41
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Re: Copaxone & Hives or Bad Reactions

Quote:
Originally Posted by Shelly7630 View Post
GREAT! So, glad that it is better for you. Yes, some spots are a bit tricky to say the least! I used to get the worse itching from my tummy shots, which was unusual. The front thighs where my best sites and I couldn't wait till I got to rotate to them. Did SS call you?
Nope, I'll give them a call and let you know. I didn't bother calling after the weekend because the Sat and Sun shots were fine. Plus, today is a holiday for us, so it will have to be tomorrow.
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Old 08-04-2008, 09:58 AM   #42
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Re: Copaxone & Hives or Bad Reactions

No, not here. Although site injection reactions were the most reported, I saw 3 other scary stories similar to yours.
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Old 08-04-2008, 06:25 PM   #43
april1848
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Re: Copaxone & Hives or Bad Reactions

Shelly, I totally understand why you're scared of trying the Avonex. Remember that there is also Rebif and Betaseron! Thank goodness we have a few options.

I felt pretty crappy Saturday morning when I posted, but later I felt completely fine, and I even managed to clean almost my entire house and do all the laundry! I paid for it on Sunday, but it was worth it!

My itching has not gone away; now it's migrating up my thighs. I was hoping this would be more temporary, but now I'm ready to get that Neurontin filled and start taking it, even if I can only take it at night. I'll do anything at this point! My injection on Friday night actually felt awesome because it was a distraction from the itching! I've tried wrapping up my legs with cold wet towels but that hasn't helped, except it kept me from itching! I'm going to wear a short dress to work tomorrow because I know that will keep me from itching--I don't want scratched up legs at work. Also, it feels that wearing pants actually makes it worse. Any sort of touch on my legs is causing increased itching and electrical shocks. I know the heat isn't helping either--the itching increases in the heat, but thankfully it will cool down here in a few days. Yup, I think it's time for the Neurontin!

Whatever you decide to do, we're behind you 100%!!
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April
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 08-06-2008, 10:55 AM   #44
Shelly7630
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Re: Copaxone & Hives or Bad Reactions

April, I can only imagine how you feel! I only hope the Neuronton works and this will pass for you. Keep me posted.

 
Old 08-06-2008, 10:56 AM   #45
Shelly7630
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Re: Copaxone & Hives or Bad Reactions

I will search them out and thanks!

 
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