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Old 08-26-2003, 01:07 PM   #1
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Question Those taking Copaxone, what were/are your side effects?

I'm going to start injections in the near future, but I'm wondering about possible side effects. My neuro told me I may have flu-like symptoms for the first few weeks. Can those of you who take Copaxone, please tell me what side effects you had (or have)? I'd appreciate it!

 
Old 08-26-2003, 07:50 PM   #2
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I've been on Copaxone for 16 months. I have never gotten flu like symptoms from it. The only problem I have and still experience is pain at the injection site. It is hard enough to do the shot but then to know you are going to havepain there just makes it worse, but I have been symptom free since beginning yhe shots, other then fatigue and chronic pain. I do have excesive sweating at night though, I thought that it was because I had just delivered a baby and how for a month you sweat at night, well to this day I sweat at night, I am not sure if this is common or what but I did see it as one of the possible side effects.
The injection site, hurts and I can not let anyone touch near the area that I injected that day...a little difficult with two small kids, and I can tell you exactly where I injected for about 6 days, so by the time it is time to get to the area that just started feeling better you have to hit it again. It is tolerable though or I wouldn't continue. Twice I accidentally hit a muscle so I do know the difference.
Please don;t llet this scare you though, I do loook into my babies eyes when I do it knowing that it is for them so that I can stay healthy and that helps. The thing that has helped me the most is that I do it right before I jump in the shower so that I can forget about it and wash my skin to get any copaxone off my skin so it won't burn, then you continue with your day and you forget about it. In the beginning I had to mix it so it was an ordeal the pre filled syringes are wonderful along with the auto ject for glass. I would do it mid day and have an infant diaper frozen in the freezer and put it on the site for 15 minutes after the injection that helped.
They tell you to let the copaxone warm up a bit before you inject but I found if I do that it tings me even more, I do it right out of the fridge, then it numbs right away. Shared solutions thinks I am strange for that but then they say whatever works. Good luck with it it is worth doing it every day...until they come out with a patch or something. I have a friend that takes the "B" and he dosen't do so well with it...and thne that is flu like symptoms. Sorry for rambling....Good Luck!

 
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Old 08-26-2003, 10:02 PM   #3
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I look forward to all responses from those using Copaxone, too. After researching all the meds...I think I will use Copaxone, too. Actually, my decision was based upon comparison of side effects and worrying about the Betaserons/Interferons that can cause flu-like symptoms, fatigue, liver or organ problems, etc. I'm already fatigued enough as it is and don't need any help...LOL! But, I've not heard that Copaxone has those side effects.

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Old 08-27-2003, 04:47 PM   #4
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I have been on Copaxone injections for 22 months now, and the only side effect for me is the pain at the injection sight along with a red bump that lasts a day or so. I have been symptom free since beginning on Copaxone, and I really do nothing but advise people to start on it since I have been doing so well myself. My doctor even dropped my visits down from twice a year to once, because some of the lesions that were on my brain and brain stem have disappeared. Good Luck!!

 
Old 08-27-2003, 09:22 PM   #5
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I have been on copaxone for approx. 9 months and have not really noticed any difference in my symptoms. I am very fortunate in that my symptoms have always been very mild, that is, fatigue, muscle and joint pain.

When I first began the injections I experienced quite a lot of discomfort at the injection site, after speaking to a nurse at shared solutions I discontinued the use of the alcohol swabs before injecting. Other than the occational itchyness I haven't had anymore discomfort. I do allow my syringe to come to room temperature before injecting, though.

Funnily enough I have also been experiencing night sweats, but I never thought to equate it to the copaxone... I thought I was experiencing periomenopause! Since I am approaching my 40's and also get the occasional hot flash during the day I was pretty convinced that this was the onset of menopause.

I would really appreciate any thoughts you may have on this AmyM. Also, I inject late in the evening, usually before bed.

 
Old 08-29-2003, 11:19 AM   #6
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I am 37 and thought that it could have been menopause myself, including a missed period, but instead I am pregnant. After being pregnant with my first two I had excessive night sweats and with my second child they never stopped.

I did see in the Copaxone insert that one of the side effects (just in the part that only a small percent get is excessive sweating). I don’t think that the timing of the shot affects that; I give my shot to myself in the AM.

Love to chat take care…my pregnancy was very unexpected and we are very concerned at the moment.

Take Care!

 
Old 08-29-2003, 09:19 PM   #7
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I just turned 38 and have a history of hormonal problems. The reason I believe it could be menopause is because I was unable to conceive a second child even after four years of fertility treatments. After having given up the possibility of ever becoming pregnant again, I found out I was pregnant about a month after my MS diagnosis. This is why I think my daughter maybe a “menopausal baby”. Luckily I hadn’t started any meds. I started the injections when my daughter was about 9 months old. I can’t exactly recall when my night sweats started because of the sweats you get after giving birth. I do find them to be a nuisance though, that’s why I’d be very curious to find out if it was because of the copaxone.

I feel for your situation, AMY M. I often wonder what I would do if I found myself pregnant again, knowing how difficult it was for me to conceive for so many years, but having to terminate the pregnancy because of the medication. That is something I know I wouldn’t be strong enough to deal with.

God Bless and good luck

 
Old 08-30-2003, 12:20 AM   #8
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Thanks, everyone, for your responses. I appreciate any info I can get at this point. It helps to know what others are experiencing on this medication, since I will soon be taking it myself. If night sweats and injection soreness are the worst side effects I get, then that will be okay I suppose. Neither one sound that great, but it could always be worse and hopefully it won't be with me. Thank you again and God bless!

 
Old 09-18-2003, 05:13 AM   #9
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I have been on Copaxone for 18 months. I have never experienced any flu-like symptoms. I only had the pain at the injection site. Some times it would welt up really bad and leave a hard knot under the skin.

However, I have found that if you do remove the small air bubble, the site rarely welts up. I know the directions say not to, but I am much more comfortable after the needle.

 
Old 09-20-2003, 02:44 PM   #10
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I've been on copax for all of six days now and really have no side affects at all. I take it at bedtime. I use the autojet which definately makes it more comfortable. I leave the syringe out of refridge for about 20 minutes. I ice pack the site first. Swab it. And yes, I do feel the *****. Then in about 2 minutes it starts to sting which lasts about 20-30 minutes but it is bareable. By then I'm asleep. In the morning I wake up painfree, no swelling. I did read that someone suggested to not swab it and I bet it would help the stinging part. Oh yeah, my first shot I made a mistake and forgot to go into the fatty part of my arm so I hit a muscle....don't do that! I'm sure that I screamed out loud!

 
Old 10-04-2003, 10:47 AM   #11
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I have been on Copaxone for just over a year... started early Sept 2002. Other than the occassional site reactions I had no side effects until Sept 6 2003. That night I experienced the reaction immediately after injection with chest pains, inability to breathe, flushing (I was the colour of a tomato!) and generally feeling pretty bad. It freaked me out but lasted only 15 minutes. Then last night it happened again. About half an hour after the reaction I went to bed and I started shivering as if I was really cold... it lasted so long that my leg muscles were hurting due to the regular contractions. I'm not sure if this a side effect of Copaxone or not. Would I recommend it...lol... funnily enough yes. I have had no major exacerbation since diagnosis and only a few mildly bad days.

I do not like the reaction I am having but if it keeps me well then I'll live with it.

Ann

 
Old 10-24-2003, 08:20 PM   #12
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I was on Copaxone but stopped using it. My site reactions were terrible - hurting, itching, for 3 or 4 days after....so that meant I had 4 or 5 ouchie, itchy spots at all times with the daily injections. Even with a year course of Copaxone, I still had the overwhelming fatigue, and problems with heat/humidity, muscle twitching/cramps, "buzzing" in the legs & arms, and constant all over itching. Guess I'm just one that it doesn't work for.

 
Old 10-25-2003, 03:38 AM   #13
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My wife has had Ms for 7years and has tried the betainterferon, but has been on the copaxone for 2 years, she had bad injection site pain till about 6 months ago that was when I found out I was diabetic not on any meds but I had made some friends that are diabetic and on insulin, I found out from them how they keep from having injection site pain, they said to stop useing alcohol wipes on the skin, I told my wife and she stopped useing them and had 90% decrease in site pain
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Old 11-04-2003, 11:02 PM   #14
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I've been on Copaxone since June 2002 and I use the Autoject2. I was DX'd in October '98 w/ my MS and didn't start my injectable therapy till January 2000.

I started off taking Avonex. After getting fatigued, beyond my comfort zone, I changed over to Copaxone. It's working really well for me, I go in for another MRI soon. I can only hope the lesions have stayed demenished.
I had the standard "soreness" from the Avonex injections, but took Ambien and slept thru them. My effects hit me 7-8 hrs after I had done the Avonex injection.
It got to where I dreaded that day of the week.

I don't have what I would consider "bad" side effects from the Copaxone. After doing Intra Musclular shots for a year and a 1/2, the subquintanious shots are a breeze!!!!
With Avonex, I had to have someone else do my shots once a week... feeling quizy and scared to shoot myself with a needle 1 1/2 inches long...

The Autoject2 has set me free and doing my shot is just like putting on makeup now. I'm blessed to have good insurance that covers the cost of this ordeal. When traveling w/ Copaxone, it can be kept at room temp for 6-7 days if needed. A real plus because on a 15 hr trip trip to CA, I don't worry about ice packs etc etc. The Avonex needs a constant refrigeration.
When I take out a new box of Copaxone, I label the top of each individual syringe, with the date and the location of what part of my body of where to do the shot at that day.
I.E. today was 11/4 - L/A (left arm) That frees me up from having to record or remember where I did the shot yesterday. By dating them, for obvious reasons, I know if I missed a day....which I never have! I look at doing those shots as keeping me out of the wheelchair that much longer...

Good luck with whatever you decide to do, the important thing is that you get on ONE of the three therapies asap. I waited and now wish I would have been more aggressive about getting on something as soon as I was DX'd, even if it was wrong.
I could have been fighting just some numbness on the bottom of my feet, like I did from Oct '98 till Nov '99...instead, I'm still fighting the after-effects of my BIG incident in Nov '99...off balance, burning stiff feet and problems with bladder etc.. So, let us all know how you do with whichever drug you go with.

 
Old 11-04-2003, 11:22 PM   #15
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Smile Just an update...

I appreciate everyones replies, very helpful. I've been on Copaxone for almost three weeks, and so far no problems. A little soreness around the injection site, but nothing too terribly bad. I always put an ice pack on immediately after the injection, it helps relieve the soreness quite a bit.

My husband gives me the injections, I haven't worked up the nerve yet to do them myself. So far, we haven't tried the Autoject2 either. He feels comfortable enough to do it this way, so who am I to mess with that? Haha

Thanks again!

 
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