Starting Copaxone

jchester71

My wife is starting copaxone today, and I was wondering if anyone has been on it, and has any advice/experience they would like to share.

nienonline

Not weight wise. It did nothing positive or negative for my weight ;-)

But my advice is get a cool pack. My skin started to itch and that really helps. Hopefully that will pass soon. Wish her my best!

mdfishinggirl

I did a clinical trial for Copaxone and Avonex (taken at the same time). I was recently unblinded and can tell you that I was, indeed, on BOTH meds. I did not mind taking the Copaxone injection once a day. However, like nienonline said, a cold pack helps. Itching, burning and sometimes welts. After three years, my skin was pretty messed up from all the injections! I can't speak to its efficacy, as I was on both so who knows? I did OK for the three years I was on it...not progressing too much. Hard to say how it will work in each individual, but glad (very, very glad) she is going on SOMETHING!

Weight wise, I didn't notice a difference one way or the other. I have, however, gained 20 pounds in the three years on my current med. May not have anything to do with the medicine...most likely to do with my love of food

By the way, nice flyfishing photo. I, too, am a flyfisherman. Worked in a fly shop near where I live and have fished all over the country. Not so much anymore ;( MS has affected my balance and that is not so good for standing in a stream.

I wish your wife the best of luck on Copaxone and with her MS. There is ALWAYS HOPE!

ruststar

I have a divot on my left arm from the Copaxone, and I can still see the needle marks on my abdomen. It's been 7 or 8 years since I've been on it.

tberry36

I've been on Copaxone for just under 8 years. I have only had two short term relapses in that time. My issues with copaxone were much the same as already discussed - injection site issues. I only rotated 4 areas because I was unable to inject in my arms and my abdomen. Because of this my legs were extremely bruised and what I would call dented. There were large areas of hard tissue. My doctor now has me taking shots three times per week instead of every day as there have been trials that show that three times a week is just as effective. At my next 6 month check in we are going to discuss the possibility of switching to an oral form of medication. It's a little scary because I don't know if my course of the disease has been so mild because of the medication (and why change it if it works) or if this is just how my version of MS will be.

I too suggest the cool pack and Tucks pads for wiping the area after injection. They seem to keep the irritation down.

Benji49

I've been on copaxone now for almost 2 years - I was on Rebif before that. So I've been injecting medication for 4 years total. The injection site reactions aren't bad - I make sure and rotate the injections - I have 7 different sites I rotate using my arm only once in that time because the reactions there are worse (bruising and swelling mostly). So one rotation I use my left arm and the next rotation I use my right. The itching is pretty bad in the abdomen and you have to be careful if you have a lot of stretch marks to avoid injecting into them.

I use witchhazel for the itching and it makes a big difference. You can get a small bottle of it at any pharmacy. Sometimes the old remedies work best. I don't use the alcohol wipes to clean the injection site because they cause more itching for me. Just plain old soap and water.

I don't use the auto injector because I found out in the first year of medication that I bruise really badly using that. I just use the needle and do it myself and I'm much happier doing that. I guess if needles bother you then actually seeing it go in might be an issue.

My advise to you, as the husband, please learn to inject when the nurse comes to explain things to your wife. And, for both your sakes, if you can't do it then say so. She should have someone who is capable of doing the injection if she is not capable of doing it. My husband said he would be fine but he isn't - my best friend is the only one I can call if I'm not capable of doing it because of shaking or numbness in my hands.

I wish your wife and you all the best - taking the medication is a positive step towards getting some control over her life. :flowerforyou:

zenzoes

Hello Welcome to the group and and may I say how wonderful your devotion to your wife is. Just by asking these questions and wanting to learn about her MS makes me smile. A lot of people don't have that support right off the bat. It makes a world of difference.

I currently am not on a disease modifying drug. I was on Copaxone for a time. Also Avonex at first. Never together though. My time on Copaxone was quite difficult. As others mentioned the swelling from injections can be bothersome. Bruising, hardening of skin, hotness, itchiness.(ice pack really helped) My issue though was the flu like symptoms. They lasted the entire time on the drug, and they really affected my quality of life. I like to think I am a tough person too.

My partner learned to administer the shots and that really helped with the dread of doing it. I didn't mind administering the shot myself, it just was on my mind lurking closer as it came to shot time each day.

Best of luck to you and your wife. Great group here with lots of support and helpful advice/ reviews. Sending a friend request. Also does your wife have an account? Always nice to have another friend. - Be well

jenhuffmankucera

I have been on Copaxone injections since May 2010. Im feeling good~have experienced welts @ injection sites. Cool packs help and also lessening of welts when I shower before the injection. Last flare up in late February 2010. Hopeful that I will not have one in 2011! Noticed a weight gain of approximately 10 lbs. since May~appetite did increase for me. Good luck & saying prayers!!

SherryGirl

I started it a month after my diagnoses in May 2010. My nero asked me to stay on it and give it a good chance to get into my system for at lest 4 months to notice any difference. I did, and it pretty much took that long to notice positive changes in my symptoms. I also take a variety of Vitamins and a daily drink called Shakeology. As I am in Canada I get it auto shipped to me from the US. It never affected my weight if not it reminds me every morning when i do my injections how important it is for me to take care of "ME" from here on in. I still get my symptoms but they come and go with stress and other things that interfere with the disease. Your welcome to message me if you wish... tell her she isn't alone...

matruesdale

I was on Copaxone for 2 years. I did have the injection site reactions but that was all reaction wise. MRI'S showed that the copaxone was not doing anything. The MS was still progressing and i was still flaring 3-4 times a year. I have been on betasoren twice and rebif for a total of 3 years and IVIG during two pregnancies. I got the flu like symptoms with all of them. I am currently getting once monthly infusions of Tysabri. I LOVE the tysabri! I have no adverse reactions to it, it is a once a minth infusion that takes around two hours and i feel great and fully recharged an hour orso after.
My husband says im easier to deal with because i dont flinch when he tries to hug me because of bruises from the shots. I have way more energy and i am so much happier!
Its crazy how every person can have such a different experience and reaction to the medications out there. I should say ithat i was diagnosed in 2004 and i have RR

ChristineW82

My neuro is trying to start me on Copaxone (we're having insurance issues). I'm really nervous about starting it. I was on Avonex for about 1 year and I was still getting the flu like symptoms pretty bad and I still got pretty jittery when it was injection time. Since Copaxone is every day idk how I'm going to do with it, but it is a much smaller needle.

Benji49

It is a very thin needle with copaxone. When you were using the other ones did you inject with the auto injector or did you just use the needle? I found the auto injector to be very hard on me - I bruised and had more swelling and itching. I've been just using the needle and manually injecting now for a couple of years and the reactions are minimal.

I don't get the flu like symptoms at all - I get the annual flu shot and have every year since they started offering them. Do you think that might have something to do with it? Do you get the flu shot?

I don't know, I'm just throwing ideas out.

ChristineW82

I was just doing it manually with the needle. I did get the flu shot last year.

The neuro told me that some people just don't adjust to certain meds.

The injection site problems are worrying me :embarassed:

stephanie_88

I've been on Copaxone for 2 years this month. I was terrified of needles when I started so I was afraid to go very deep with the needle setting on the auto-injector even though I was in the obese category and there was no way I was doing it manually. I had lots of site reactions (bruising, hard knots and itching). After several months, lots of research convinced me to go up to a #8 on the injector setting. It actually hurts LESS because you get past the nerves in the skin and NO MORE site reactions. The medicine still stings a little as it spreads after the injection and the skin in the immediate area is slightly red for about an hour but no more itching, bruising or knots under the skin. I have since lost 68 lbs and still use the #8 setting.

My lesions after one year on Copaxone actually started to fade. I just had my 2 year MRI and no new lesions. I don't have many symptoms, only some fatigue when the weather shifts and some dizziness if I spin during Zumba class. Occasionally a little vertigo will catch me off guard. I have not had any relapses since starting the Copaxone and I don't have any flu-like symptoms. Overall I'm as happy with the results as you can be having to this for the rest of our lives.