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Copaxone & Hives or Bad Reactions


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Old 07-24-2008, 08:55 AM   #16
Shelly7630
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Re: Copaxone & Hives or Bad Reactions

Hi Nikki, The same as I asked GGirl....is rebif handled better if taken at night before bed? Are the symptoms guaranteed? What do you think about Tybari?<spelling>
You are SO right about ingredients. I have found...or I should say I' am shell shocked (scared)...at everything I go to eat ( I read EVERY label). It seems there is not much of anything that I can eat, that does not contain either peanuts or soy products. I wonder when you go for the allergy tests, will they just test for allergies that you are sure have caused a reaction? It just blows my mind that this has happened out of the blue. The copaxone reaction really took the cake. So glad to hear your brother is doing well...although he needs to be careful. Hard to tell that to a man...been there done that! Thanks again, Nikki.

Last edited by Shelly7630; 07-24-2008 at 08:57 AM.

 
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Old 07-24-2008, 05:56 PM   #17
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Re: Copaxone & Hives or Bad Reactions

Hi Shel- this is just my opinion, but I dont think you are ready for Tysabri. I dont think many of us here, are...its kind of a last resort drug- even though tehcnically it isnt. Techincally the company says it can be used as the first line of defense; but its SO strong and there is still so much UNKNOWN about it- I wouldnt go that route yet.
As far as Rebif goes...let me tell you that I do mine right before or right after dinner. Being that I never get to bed before 11, I like to do mine by 7 at the absolute latest...for some reason it keeps me awake sometimes- gives me a burst of energy. In the beginnning it was like clock work- 2 hours AFTER the shot, Id get nauseaus and feel shakey, sweaty and feverish..it would last a half hour and go away...then, an hour after that it would start again- I couldnt sleep thru that. within 3-4 hours it stopped. id get the occasional stomache cramp or hot sweat- but nothing horrible. It never lasted longer than 5 hours ever...so I really couldnt sleep thru it, as much as just "get thru it" IN THE BEGINNING.

I found out that within 3 months I wasnt getting reactions at all...now and then, the occasional sweat or nauseau- but no more pain! One night, I forgot to take my Aleve and just did the shot. When I realized it, I was like "oh no!" but I didnt take it and nothing happened, since then, I try NOT to take anything most of the time, and only take a preinjection Aleve if I already know my body hurts and figure it would be good for me. Ive never had to take anything after the shot or the next morning. All in all, it took me about 4 months before I totally adjusted to the med- and absolutely NO REGRETS on taking it.

Seems to be working for the most part. MRI in ten days, so check back and let me tell you if it is for sure!
avonex seems to have longer side efffects, but Illl let April or someone on Avonex confirm that for you..

youlll be fine. I know it...and Ill tell my brother again to read labels and he will ignore me again. But hey=- I am the big sister!
Hugs
nikki
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Old 07-25-2008, 09:44 AM   #18
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Re: Copaxone & Hives or Bad Reactions

Hi Nikki,
Thanks for all the information. I will be taking every thought with me to the docs. on Monday. You have a MRI in ten days...MAKE sure and post how it goes. My prayers are with you.

 
Old 07-25-2008, 09:48 AM   #19
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Re: Copaxone & Hives or Bad Reactions

Quote:
Originally Posted by DavidLeeK View Post
yeah, hives over a majority of the body is serious reaction, not the normal issues,the woman i know just gets them around the injection, but they last for weeks, but only seems mostly on the backs of the arms, she also gets welts the size of baseballs that last for days
So sorry to hear about your friend. She may want to try and change the injection depth. The hives you described actually sound like welts or site irritation. The bumps at the get go look like hives, but are lots bigger. Good luck to her and to you! Thanks for all the input.

 
Old 07-25-2008, 09:51 AM   #20
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Re: Copaxone & Hives or Bad Reactions

Quote:
Originally Posted by Bearygood View Post
Shelly, I'm SO sorry to read about what you've been through. I'm glad though that your instincts about the aspirin and Benedryl kicked in!
Thanks SO much! Yes, I' am glad too. I have actually as of late made my own allergy kit to carry around as I do not know what may react. Thanks for your support and I hope all well with you!

 
Old 07-29-2008, 02:15 PM   #21
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Re: Copaxone & Hives or Bad Reactions

Hi Nikki, Went to the Docs yesterday. I will be taking Avonex. I hope all goes well with that. I will keep you posted. Make sure and let us know how your MRI goes. GOOD LUCK!!!

Last edited by moderator2; 07-31-2008 at 11:33 AM. Reason: unnecessary quote

 
Old 07-29-2008, 02:39 PM   #22
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Re: Copaxone & Hives or Bad Reactions

Quote:
Originally Posted by Shelly7630 View Post
Hi Nikki, Went to the Docs yesterday. I will be taking Avonex. I hope all goes well with that. I will keep you posted. Make sure and let us know how your MRI goes. GOOD LUCK!!!
Glad to hear you found another option to try Shelly. I hope this goes well for you!
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Old 07-29-2008, 02:51 PM   #23
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Re: Copaxone & Hives or Bad Reactions

Good luck with the Avonex, Shelley. I'm almost on Month 9 of taking it. For me, the side effects were excruciating the first few weeks, then pretty bad until a few weeks ago. I inject on Friday nites, and I was sick through Saturday. Now I feel much better, but it was hard.

But we're all different. A friend of a friend takes Avonex, and she didn't get the side effects once. Then I met a lady on Avonex who still gets sick after three years. The average is 3-6 months.

What I like about it is that it's once a week. I like that part the best. Also, even though the needle goes into your muscle, it doesn't hurt at all. Bloodwork and IVs are way more painful to me. And there's no injection site reactions. There have been a few shots where I've bled more than usual and got a bruise, but that's only happened three times. I only inject in my thighs, alternating each week--there are more injection sites but those are easiest for my husband, because he does them.

Make sure you premedicate with Aleve or Motrin, and make sure you are very hydrated. I drink tons of Gatorade on Fridays, enough to make me pee every ten minutes or so. For me, staying hydrated helps more than any medication. Also, I take a Klonopin on shot nights before I go to bed, so I don't wake up in the middle of the night feeling lousy. Generally if I can sleep through the worst of it, the mornings aren't bad.

I hope it goes well for you!
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Old 07-29-2008, 04:59 PM   #24
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Re: Copaxone & Hives or Bad Reactions

HI Shel- Im glad to hear youll be trying Avonex...its the same drug as Rebif and April is more experienced with the details of the drug then I am, but basically its just once a week into the muscle instead of 3 times a week subQ as rebif is...Rebif is also stronger, so if this works for you, but down the road you need to increase meds- youll have an option.

My MRI is the 4th, and my follow up isnt until the following week, but Ill let you know! I had to stop in my Neuros office today and everyone was commenting on how "good" I looked. They all figure its because I quit my job. they might be right. The new job still hasnt really taken grasp yet- I have no idea what my real responsiblities are, but I do have a meeting with my manger at 10 in the morning, so Ill know more then.
But, for you- Im glad to hear you have options! Keep us posted on how youre doing...and please give this drug a fighting chance. Its tough to get used to the first few months, but it will be so worth it!
Hugs
nikki
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Old 07-29-2008, 07:53 PM   #25
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Re: Copaxone & Hives or Bad Reactions

Hey Shelley. hope the Avonex works well for you. My inject nite is tonight. I just took it out of the fridge. Its sitting on my chest drawers. I also use a smaller needle. I'll take 1 aleve around 6pm then inject by 6.30. That gives me few hours before anything usually creeps up. I'm in bed around 10ish.. That's it. This is 2nd time around with Avonex for me. I hated it so much years ago. That i stopped it. But also wanted to have another child too. Believe me. it took a nasty relapse for me to start on them again.
Now i don't get the side effect anymore. Well i think i don't. I usually stayed in bed most of the next morning sleeping, feeling really sweaty & lethargic. Cant sat anything is guaranteed but its month 10 i think,and i feel confident and soooo much better. So gotta be happy with that.
I just went to check my diary. Its actually been 1 year... July 27th 2007. Far out time flies..
As for my 4yrs old. Yeah her allergy came out of the blue. she has learnt to ask if ANYTHING has nuts in them. I read all the labels.

 
Old 07-30-2008, 12:22 PM   #26
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Re: Copaxone & Hives or Bad Reactions

I hope it goes well and I can stand the side effects. It really stinks that you feel crappy anyhow and then have to take a medicine that worsens it. I will keep you posted on how it goes. I hope all is well with you!

Last edited by moderator2; 07-31-2008 at 11:32 AM. Reason: unnecessary quote

 
Old 07-30-2008, 12:28 PM   #27
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Re: Copaxone & Hives or Bad Reactions

HI Nikki,
I hope when you get this your job is straightened out? I hope the Avonex will be okay. I will give it my best shot. I did start a vitamin regimen and I' am hoping that makes me feel better. I' am SOOOOOOOOOO tired all the time. My Doc. prescribed Provigil and my insurance company denied it. I took that back in the day as samples from a Doc. as my insurance had denied it then. Samples nowadays is scarce. So, he gave me Amantadine. It seems to be working but is making me a wee bit jittery. I will give it some time. I also had my nueronton upped and that helps lots with the jolting electric pain. All in all things are fine...fine as they can be anyhow! Hope all is well with you.

Last edited by moderator2; 07-31-2008 at 11:32 AM. Reason: unnecessary quote

 
Old 07-30-2008, 12:34 PM   #28
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Re: Copaxone & Hives or Bad Reactions

Hi April, 9 months and you still get sick? That is the stuff that makes me scared. I feel crappy most of the time anyhow and then to add to it. I will give it a shot and hope for the best. After injections...if you do it at night, do you wake up feeling crappy for the whole next day? How long does that side effect last? I' am so disapointed that I had that reaction to copaxone. Anyhow, like I said, I will give it a shot and just hope for the best. I hope you are well.

Last edited by moderator2; 07-31-2008 at 11:32 AM. Reason: unnecessary quote

 
Old 07-30-2008, 05:50 PM   #29
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Re: Copaxone & Hives or Bad Reactions

Hi Shelly! You asked me a question, and I'm going to tell the truth, no sugarcoating.

The first two weeks of Avonex, I injected in the morning. The first time was when the nurse came over and showed us how. The next week was a holiday weekend and I wanted to stay awake so I'd know what it would do. Those were horrible days, but they only lasted that one day. The side effects are just like the flu--bad body aches (I wanted to rip out my ribs, they hurt so much), fever, seizure-like chills, vice gripping headaches. When I had to walk to the bathroom, my legs wobbled and it wasn't easy. To be honest, the only part of my body that didn't hurt was my stomach and digestive system. The next day I was much better, just very tired. The side effects come about 4 hours after you inject, they get worse, then they get better. Once they start getting better, you can notice the change by the hour.

Then I started injecting on Friday nights, so it wouldn't interfere with my job, I could try and sleep thru it and I could be relatively lazy the next day. For a few months I would wake up with a slight fever, and I'd be exhausted and achey for the rest of the day. I noticed that if I woke up in the middle of the night sick, it was hard to recover. The chills were the worst. I thought I was seizing! There were several nights where I couldn't get warm, no matter what, in the middle of the night. Sometimes my husband (he stays up late) would literally get on top of me and wrap around me like a straightjacket to keep me from shaking from cold. The next day I'd be really sore from shaking all night, but my abs look fabulous!

Now it's easier. Three shots ago I was able to go to a festival in 95 degree heat for four hours. When I wake up, I feel a little tired, but I feel better as the day goes on. Never once did Avonex make me sick for longer than a day.

There were certainly times when I wanted to stop, and many nights that I had (still have) Shot Fatigue. It's wearisome taking a medicine that is worse than the disease (for me at least) some of the time. Luckily I was able for the most part to reserve Saturdays for this, and I still do for the most part, but I'm starting to LIVE again on Saturdays now.

I swear that the injection doesn't hurt at all. And there are no injection site reactions. I was just dx last September, so I don't want to do lots of injections. I'm also having faith in it--I haven't had any attacks. I decided when I was diagnosed that I wanted to treat MS aggresively. Losing a day out of every week for months on end (I'm just starting to get that day back) was a huge depressor, but for now I'm keeping the ideal that it really will help! I may change my mind in the future, but in my situation where I could have a shot hangover, it was totally worth it.

For your last question, I am doing okay right now, except for my new symptom of phantom itches on my legs. I've had a lot of energy the past few days! I hope you are well too, and I hope I didn't scare you, I just wanted to tell the truth. Please keep in mind that I had it worse and longer than most people statistically do!
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Old 07-31-2008, 09:31 AM   #30
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Re: Copaxone & Hives or Bad Reactions

Hi April,
Thanks so much for not sugercoating it! I appreciate that more than you know. I spoke with the Nurses from Avonex and of course they are not brutality honest about a drug they market. I have to admit I' am scared to death. I probaly would not have been if it where not for the Copaxone incident. I just have that in the back of my mind. I will however give Avonex a try as I know it is for the best. I day a week is not the end of the world as I keep telling myself. I figure I would do Sunday night as Mondays stink anyhow! Maybe I have finally figured out a way to eliminate that day! Thanks so much for your story.
Now, as far as that "itching" on your legs....have you tried Nueronton? That works great for me. I take 300 mg 3x's a day.

Last edited by moderator2; 07-31-2008 at 11:31 AM. Reason: the huge quote!

 
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