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Old 10-15-2008, 12:16 PM   #1
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Diagnosis Confirmed Yesterday- Questions about Copaxone

Hi All,

I'm brand new to this board and as noted in my title I was officially (if there is such a thing) diagnosed yesterday. I have a wonderful doctor, who believes in empowering her patients. She wants me to start therapy (injections) and has given me literature on several medications.

I'm leaning towards Copaxone, although I dread having to do 365 shots. I have couple of questions for anyone that is taking (or has taken) Copaxone.

1. I've heard that the Copaxone injection site can become very irritated. Does this go away-- or does it get better? Have any of you developed indentations in your skin?

2. I've heard flu like symptoms are a horrible side effect of MS injections. I've also heard this side effect is less common with Copaxone-- for those of you that are or have taken this drug, do you agree?

3. I've had a history in the past of depression (very much under control at the moment) but I want to do as much as I can to stay mentally healthy (don't we all ), so if you take Copaxone, have you had any concerns or depression side effects?

4. Last-- not to sound vain, and I know in the scheme of things it shouldn't matter, but it does, so here goes. I'm curious about weight gain-- any feedback?

Thank you for any feedback you are willing to share.

 
Old 10-15-2008, 06:42 PM   #2
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MS for life HB User
Re: Diagnosis Confirmed Yesterday- Questions about Copaxone

Quick answers to your questions. I have been on Copaxone for six months now.

1.) I have a few indentations, and I currently have two large bruises, one on each thigh from last week's injections. I find that since I am on the thin side, I struggle with some of these side effects more than others. I'm sure if I took more time and attention, I may not have so many issues.
2.) Absolutely no side effects from Copaxone. No flu like, etc. This is the main reason I went with Copaxone. I knew someone who did Betaseron and everyone thought she was dying the first six months she has such problems. I have a very busy life (even though I have had to slow things down lately) and did not want to do be sick so often.
3.) Not sure here. I've never been diagnosed with depression, and I have to admit the last six months has been tough. I've also been dealing with the death of a friend and my business I've run for ten years is possibly going under, so I have questioned my mental status lately, even though I know I am blessed in many areas, the stress has been quite consistent. I really don't think I would put it with the Copaxone, but cannot say for sure.
4.) No weight gain or loss, even though the MS has made me not as active as I used to be.

Hope this helps!

 
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Old 10-16-2008, 07:40 AM   #3
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Re: Diagnosis Confirmed Yesterday- Questions about Copaxone

Quote:
Originally Posted by MS for life View Post
Quick answers to your questions. I have been on Copaxone for six months now.

1.) I have a few indentations, and I currently have two large bruises, one on each thigh from last week's injections. I find that since I am on the thin side, I struggle with some of these side effects more than others. I'm sure if I took more time and attention, I may not have so many issues.
2.) Absolutely no side effects from Copaxone. No flu like, etc. This is the main reason I went with Copaxone. I knew someone who did Betaseron and everyone thought she was dying the first six months she has such problems. I have a very busy life (even though I have had to slow things down lately) and did not want to do be sick so often.
3.) Not sure here. I've never been diagnosed with depression, and I have to admit the last six months has been tough. I've also been dealing with the death of a friend and my business I've run for ten years is possibly going under, so I have questioned my mental status lately, even though I know I am blessed in many areas, the stress has been quite consistent. I really don't think I would put it with the Copaxone, but cannot say for sure.
4.) No weight gain or loss, even though the MS has made me not as active as I used to be.

Hope this helps!
1. It helps a lot. Thank you for sharing~ I'm also on the thin side, so I wondered if I might have some issues. Your feedback provides a heads-up on that issue so I'm a bit more prepared.

2. As for the busy life, I'm in the same boat as far as my career and my doctor felt that Copaxone would be best suited for my lifestyle. I agree that we need to slow down...sometimes easier said than done.

3. Thank your for your honesty on the depression side and I'm very sorry to hear about your friend. I would much rather have 365 shots and minimal depressive effects~ so this is such an important issue for me.

4. Great! I agree on the activity level-- depending on my symptoms, mine goes up and down.

Thank you again and I wish you the best!

 
Old 10-16-2008, 10:07 AM   #4
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jlbrow7 HB User
Re: Diagnosis Confirmed Yesterday- Questions about Copaxone

Quote:
Originally Posted by LLCRGD View Post
Hi All,

I'm brand new to this board and as noted in my title I was officially (if there is such a thing) diagnosed yesterday. I have a wonderful doctor, who believes in empowering her patients. She wants me to start therapy (injections) and has given me literature on several medications.

I'm leaning towards Copaxone, although I dread having to do 365 shots. I have couple of questions for anyone that is taking (or has taken) Copaxone.

1. I've heard that the Copaxone injection site can become very irritated. Does this go away-- or does it get better? Have any of you developed indentations in your skin?

2. I've heard flu like symptoms are a horrible side effect of MS injections. I've also heard this side effect is less common with Copaxone-- for those of you that are or have taken this drug, do you agree?

3. I've had a history in the past of depression (very much under control at the moment) but I want to do as much as I can to stay mentally healthy (don't we all ), so if you take Copaxone, have you had any concerns or depression side effects?

4. Last-- not to sound vain, and I know in the scheme of things it shouldn't matter, but it does, so here goes. I'm curious about weight gain-- any feedback?

Thank you for any feedback you are willing to share.
First, welcome!

I really like Copaxone; I've used it for almost 4 years. I know you will hear from some who do not and I understand where they are coming from b/c I hated using Avonex while others tolerate it well.

To answer your questions:
1. I have never had any injection site problems (I understand that making injections too deep can leave a bruise).
2. I've had NO flu-like symptoms (on Avonex I experienced them every week/injection and they lasted 3 days on avg.)
3. I don't suffer from depression. I get mad occasionally and feel blue but nothng really bad that isn't of a passing nature.
4. I have gained some weight (10 lbs.) but I believe it's b/c I can't exercise (all I do is walk slowly, for short distances, with a walker and do some PT exercises).

I will not quit using Copaxone w/o darn good evidence that something else is better.

Good luck!

Last edited by jlbrow7; 10-16-2008 at 10:12 AM.

 
Old 10-16-2008, 08:34 PM   #5
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glamour girl HB User
Re: Diagnosis Confirmed Yesterday- Questions about Copaxone

LLCRGD just wanted to say Welcome to these boards.
hope your meds go well for you. healthy days to you.

 
Old 10-16-2008, 11:05 PM   #6
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Nenu HB User
Re: Diagnosis Confirmed Yesterday- Questions about Copaxone

1. I've heard that the Copaxone injection site can become very irritated. Does this go away-- or does it get better? Have any of you developed indentations in your skin?

Been on Copaxone since May 08. No indents so far. Sometimes a short-lived lump after. It's generally gone in 24-48 hours. The site CAN become irritated. Be it for 20 min burning after the shot, rash, welt... all types of reactions can happen.

2. I've heard flu like symptoms are a horrible side effect of MS injections. I've also heard this side effect is less common with Copaxone-- for those of you that are or have taken this drug, do you agree?

I've never had a flu-like reaction to Copaxone.

3. I've had a history in the past of depression (very much under control at the moment) but I want to do as much as I can to stay mentally healthy (don't we all ), so if you take Copaxone, have you had any concerns or depression side effects?


It's really tough to pin depression down on the drug you're taking, versus other factors. I not only take Copaxone, but I also take other medications. Also, lifestyle plays a role, as do many other 'elements'. Copaxone alone would not be the first place I would look when facing depression.

4. Last-- not to sound vain, and I know in the scheme of things it shouldn't matter, but it does, so here goes. I'm curious about weight gain-- any feedback?

I've lost a lot of weight, but I also don't eat red meat and I eat an extremely low fat diet.
__________________
RRMS Dx 03/08

 
Old 10-17-2008, 03:07 AM   #7
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Re: Diagnosis Confirmed Yesterday- Questions about Copaxone

I am also on copaxone, after six years of Avonex and unfortunately I was one of
those that kept getting worse side effects so was changed a year ago and have
really enjoyed 7 days a week without the flu. I did have a relapse late July, but
hoping that was, as the doctors thought, due to getting over heated.
All the best,
Pamela

 
Old 10-17-2008, 09:18 AM   #8
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Re: Diagnosis Confirmed Yesterday- Questions about Copaxone

What a shock! I came here because I was just dx yesterday with MS and came to find some answers about Copaxone. It was like I found a post I didn't write but said exactly what I was going to! So we're in shock together. A bit scary, isn't it? Not knowing what will happen, how our bodies will react.

My doctor also wanted me to read up on the treatment and have input as to what we decide. He feels that Copaxone is a good choice to start with (it doesn't work for everyone but has great success) and I agree. The side effects seem to be minimal compared to others. And he said it is very possible that I will be feeling pretty good by Christmas. Which would be fantastic! I've felt bad for so long I can't remember what it feels like to feel good.

I think I do have some situational depression right now. Quite an adjustment all this has been. And the possibility that I may progress into a more disabling state is daunting. When I return to the doctor, we will be discussing antidepressants. I was against that at first as I always have been one to just stay strong and upbeat. Optimistic. But I think it may help at this point, at least for the short term anyhow. Then I can re-evaluate. I also am concerned about depression as a side effect. Any more and it will be too much for me to handle, I'm afraid. So it might be best to start treatment for that as well. Nip it in the bud so to speak.

As far as weight gain, I have gained weight from lack of normal activity but recently started Tai Chi and lost some. My doctor feels that Copaxone will allow me to do much more than I currently can and so the rest of the weight will eventually come off. I eat very healthily, it's more from lack of exercise. And I feel flabby, not toned like I used to be.

Anyhow, I rambled but just wanted you to know that I'm out here too. I've been on these boards for a while and I can tell you this is the best place to be! I have found more info and help here than any other place. Tips and advice that are invaluable. The people here are the kindest and most helpful. Truly amazing bunch. You can come anytime you feel scared or lonely too. It can feel isolating. No one else really understands except others with the same issues. And you can learn from others' experiences and make more informed decisions. So welcome!

 
Old 10-17-2008, 03:12 PM   #9
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Re: Diagnosis Confirmed Yesterday- Questions about Copaxone

I've been on Copaxone a year--my liver won't tolerate interferons.No side effects at al--a brief 'BEE STING" feeling, redness and irritation for maybe 15 minutes. Arnica gel helps a lot. Daily shots seem like a pain, but once you get used to them, they take like 2 minutes max--I can do 30 seconds if I dont' use the injector, but I'm good with needles. I really don't think anyone knows if one of the drugs works better than another. Eveeryone's hot on Rebif because it's the newest, and coolr towards Copaxone because it's older and isn't an intrferon, but as I said, my liver and interferons don'f mix.

Good luck!

 
Old 10-19-2008, 08:33 PM   #10
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Re: Diagnosis Confirmed Yesterday- Questions about Copaxone

i've been on copaxone for almost 4 months now, and about 6 weeks ago i started getting injection site reactions, swelling, redness and itching, i spoke with the nurses several times and they said it will go away over time, it seems to be getting better now

i know someone else with the same reactions who was dx'd just before me, hers is getting much better also

it is annoying if it happens, but i believe it is your body's immune system trying to adjust

 
Old 10-20-2008, 02:19 PM   #11
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Re: Diagnosis Confirmed Yesterday- Questions about Copaxone

Just to give you one more thing to think about....my doctor started me on Copaxone first- i had 6 shots and wound up in the hosptial with severe reactions 4 times. The last time they took me off it- I stopped breathing. After a few weeks, I started Rebif....although the side effects were horrible at first, I did adjust quickly and have never had a relapse or anything MS related since starting it, 2 years ago.

Copaxone seems to be a miracle drug for MOST people, but the few who cant tolerate it, really have issues. I was one of those people. Like most drugs, everything has its "risks" and if the benefits outweigh the risks, then it is YOUR choice to take the chance. For me, Rebif has been a miracle drug. I would never take another synthetic drug like Copaxone and choose instead to take an Interferon, which is a naturally found element in our brains....however, this is only my opinion.

Be sure to understand the differences between how Copaxone and the Interferon's work...this might help you make a more educated choice in which way you choose to handle your MS.

Good luck to you!
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Old 10-20-2008, 03:18 PM   #12
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Re: Diagnosis Confirmed Yesterday- Questions about Copaxone

I would not go as far as saying Copaxone is the miracle drug for most people.

If it works, great, but like any other of the drug options, what works for 1 may not work for another.

This is the first I'm hearing that Copaxone is the 'miracle drug for most people'. Mind elaborating?
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RRMS Dx 03/08

 
Old 10-20-2008, 09:38 PM   #13
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Re: Diagnosis Confirmed Yesterday- Questions about Copaxone

yeah i wouldn't call it the miracle drug, there is none for us, we hope one day there is, each of the approved drugs out there i believe pretty much do similar, its just the reactions that people have from them, it seems that copaxone is tolerated by more people that use it than the other drugs, but again, there is no miracle drug

 
Old 10-21-2008, 06:31 AM   #14
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Re: Diagnosis Confirmed Yesterday- Questions about Copaxone

it seems that copaxone is tolerated by more people that use it than the other drugs thats all I meant. The fact that it doesnt cause the side effects for MOST people, makes it a miracle....having gone thru Interferon side effects and anyone can read the hundreds of posts here about the same, Copaxone is MUCH more easily tolerated!

sorry miracle was the word that came to mind- i shouldnt have used it so literally.
nikki
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RRMS- dx 05

 
Old 10-21-2008, 07:26 AM   #15
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Re: Diagnosis Confirmed Yesterday- Questions about Copaxone

Quote:
Originally Posted by DavidLeeK View Post
its just the reactions that people have from them, it seems that copaxone is tolerated by more people that use it than the other drugs
Ok, that makes a lot more sense. Thank you DavidLeek for deciphering

I do agree that versus the flu-like side effects (for example) of Interferons, Copaxone is more tolerable in that respect, however there are cases of folks having repeated IPIRs, allergic reactions and being unable to tolerate the daily site reactions.

It always comes back to the individual
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