Experiences with Copaxone

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Postby naychergirl » Wed Aug 04, 2010 6:18 am

Hi All!
I was diagnsoed in 2007, and started copaxone in 2008. Last year I had 3 relapses, so now I am on Rebif. Good so far, and it's nice having to inject every day.

And the best part of Rebif is, I don't get the welts, bumps, and skin indentation like I did on copaxone.

If copaxone is working for you, that's awesome! I am going to have the liberation treatment done soon, so I an praying I can get off all of the med's that I take.
Keep the faith!
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Copaxone experience

Postby ybt » Wed Sep 01, 2010 4:31 pm

Hi, my name is Julie. I live in central Ontario, Canada. I have RRMS and was diagnosed in 1991. Most days I consider myself very lucky. Other days of course I am feeling sorry for myself. I found this site when researching Copaxone injection reactions. So far it seems to be very informative and the members very helpful to each other.
Monday night I gave myself my injection as usual. Right away I said to my husband, “Wow this one is going to be itchy”. That was an understatement! Within 2-5 minutes I was covered in hives. My breathing was laboured and my back, shoulder and chest muscles felt like they were being painfully squashed. Not right away but within 15 minutes I also felt very nauseated and my tongue seemed thick. Although it did not appear so. It was 3 hours before the symptoms subsided enough that I could go to sleep.
The next day I went to see my GP and was told that I had an allergic reaction and that I should have probably went to the hospital. Also stop the injections at once. I am now waiting for an appointment with my neurologist.
After doing some internet research I think that I have been having an adverse reaction to copaxone for quite some time. For about the last year I have been complaining about neck and back pain. Also have had the feeling of someone sitting on my chest and that I can’t get enough air. I complained of this many times to the doctor. I have had blood work, ECG, ultrasounds etc...could never find anything wrong. So of course it was chalked up to MS symptoms. Now after reading some other people’s stories I am not sure that this had been caused by copaxone?

I have lived with MS since before 1991 and am still walking, slowly but walking. I have bladder and bowel issues and of course fatigue. Optic Neuritis and went blind in my right eye for a short time. There are of course a multitude of other symptoms that come and go. However for the most part I believe that I am doing fairly well for having MS for so long. It is just that general all around I feel like crap that gets to me after a while. Now this copaxone reaction and to realize that it has maybe been the culprit all this time makes me really upset.
I am hoping that now that I have stopped the injections I may feel actually better. Although I do have the fear that even though my body wants to reject something in the copaxone, is it what has been keeping the major relapses.
MS is so confusing sometime.......
Thanks for listening  .

Re-posted from my introduction
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Re: Experiences with Copaxone

Postby dadamoa » Mon Oct 24, 2011 7:33 pm

I have not started Copaxone yet and I am not looking forward to it. I was on Rebif and the side affects made me feel like I expect to feel in 10 or even 20 years. So I called my neurologist to request a lessening of the dosage but they told me I couldn't...so I stopped taking it. I can't see forfeiting my general capabilities in order to maybe, slow down the progression of the disease. Now Copaxone has a great reputation - except for the injection-site reactions - but so far that reputation has come from pharmaceutical employees. Are there any other side effects, like extreme fatigue or overall malaise? I don't want to be distracted and encumbered again so if that is the case I may just wait.
Also not looking forward to the injections because I have very little fatty tissue and boy, does it hurt to stick myself in my less than supple legs.
Please let me know if any of you have side effects that make your quality of life less.
Thanks.
My sympathies to all the other MS sufferers or MS medication side effect sufferers.
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Re: Experiences with Copaxone

Postby NHE » Mon Oct 24, 2011 10:34 pm

dadamoa wrote:Are there any other side effects, like extreme fatigue or overall malaise?


Welcome to ThisIsMS. Regarding Copaxone, some members have reported injection site pain, injection site lipoatrophy, and what's known as an immediate post injection reaction. You should be able to find discusson of these side effects in this and some of the other forums.

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Re: Experiences with Copaxone

Postby nance153 » Fri Nov 18, 2011 4:08 pm

I was diagnosed in Feb. 2009 and started on rebif, it was raising my liver enzymes so they switched me to copaxone. After being on it a full year, I started getting irregular menstrual cycles (every 3 weeks) , breast pain and was told that these are not side effects. So I stopped the copaxone for 3 months and the symptoms went away. Has anyone else had any kind of side effect having to do with menstrual cycle. I was actually told I should be on tysabri, and that the copaxone really isn't doing much for me but it is better than taking nothing. any opinons?
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Re: Experiences with Copaxone

Postby Bouncycat » Thu Dec 29, 2011 8:45 pm

i have been taking copaxone for 13 months, so far so good. the first months are the worst - it really stings/burns but it gets better. i inject at bed time and sleep it off. i am also really diligent about rotating within and between injection sites -drew myself a chart to make sure i am always at least 2" from last injection in a particular site (it was on a leaflet to keep at least 2" away). my approach meant i didn't actually inject the same spot for 6 months so hard and sore spots had time o heal. so far no lipo, i do have bruises. No IPIR or other side effects other than site reactions. No one here mentioned ice packs - that really helped me when i started, ice pack before and after. now i don't bother because i am used to it. Yes i was depressed at first at having to do this every day but those felings are much less now. fingers crossed my tolerance continues!
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injection tracking: DIY & phone app approaches

Postby MarkLavelle » Fri Dec 30, 2011 12:06 pm

Bouncycat wrote:... i am also really diligent about rotating within and between injection sites -drew myself a chart to make sure i am always at least 2" from last injection in a particular site (it was on a leaflet to keep at least 2" away). my approach meant i didn't actually inject the same spot for 6 months so hard and sore spots had time o heal.
I've been on Copaxone just one month, with no issues other than the stinging (knock wood), and I figure good site rotation is gonna be A1 for the long haul. I'm lucky not to be having lasting reactions, but that also means that I can't tell exactly where I had my last injection even a day later. And you can be sure that a week later I've completely forgotten!

The SS diary book has very usable diagrams for marking sites, but the weekly format doesn't make it easy to see which site has been unused the longest. So I blew up one of those diagrams on a copier, with each zone labeled with a day of the week. Now I just have one sheet that I can use until it gets too full (I'm figuring a different color pen each month). Here's what it looks like so far:
Image
(There's a blank PDF of this at http://www.harmonicappliances.com/MS/injection_tracking_sheet.pdf if you'd like to try it out.)

I've also found a Android smart phone app called MedNotesPlus that works pretty well for tracking any frequent subcutaneous injection regimen. It's not a pretty user interface, and I'd like to see a few more options, but it shows you your previous sites (new in blue, most recent two in red, others in green) and lets you add comments, pictures, whatever. I've started keeping track of my Autoject depth and sting rating to see if I can learn anything that can make injections better.

You can see on the picture that I've also drawn the phone app belly diagram - it's a little 'lower resolution' than the SS version. For now I'm keeping both going, but I'm hoping the phone app will continue to get better...

Cheers,
Mark

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Experiences with Copaxone

Postby Bouncycat » Sun Jan 01, 2012 1:50 pm

Hi MarkLavalle,

I just have a simple grid drawn up for each site (i just use a notebook) and i label which part of grid is, for example, top of arm, elbow, inwards, outwards etc. so i can orientate the grid. When i mark off a sector on the grid i also number it so i know when i look next week which was the last spot. Very simple but I find it an effective way of keeping track. I also found i actually have more spots within a site than the tracker allows for (yes okay, i have big thighs!) and my nurse said that you can pretty much use any area in those sites that is fatty, just stay away from the joints and any scars/stretch marks, 1 inch around the belly button etc. so I ty and maximise the areas as much as i can.

When thinking about depths I have a handout from SS that gives guidance if using the autoinject:
Depth 4 for low body fat
Depth 6 for below-average body fat
Depth 8 for avergae body fat
Depth 10 for above average body fat
The aim is to get in the subcutaneous area (into fat just below skin). This is in the "staying on treatment" pamphlet I recieved months ago, and suprisingly i haven't seen it in any pamphlets since. I was getting some swillings so I bumped up the depth as i was too close to the skin (i talked to my SS nurse first, this what she suggested). I have different depths for different locations.

For me, the degree os stinging seems to be completely abitrary! after just over a year on it i still have not figured out why some days it really stings and others it is just okay (it always stings to some degree).
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Re: Experiences with Copaxone

Postby LR1234 » Sun Jan 01, 2012 4:57 pm

I was rotating at the beginning but found I had worse site reactions in some places more than others (i.e legs/arms) Now I don't rotate much at all and stick to my buttocks/hip areas and occasionally in my stomach (I also inject blood thinners so I reserve the tummy area for them usually as copax sometimes makes the area unusable if a knot forms under the skin)
I used to have real bad welts if I injected anywhere into my legs but I don't have reactions at all in the buttocks/hip areas.
I don't use the autoinject.....
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Re: Experiences with Copaxone

Postby patticake66 » Mon Jan 02, 2012 5:14 pm

Has anyone experienced any kind of skin reaction to copaxone...and I don't mean with the injection sites. I am talking about little bumps that are itchy at first and then turn red, scab over and fade away. I get them mostly on my legs, which leave scars that take forever to heal. A prominent dermatologist at NYU told me it was definitly a reaction to the medication but the only way to be certain is to stop taking it. I really don't want to stop. I checked the side effects of copax but nothing sounds like what I get...I can go weeks without a breakout but then anywhere from one to five red sores appear. Does anyone experience this?
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Re: Experiences with Copaxone

Postby LR1234 » Tue Jan 03, 2012 10:06 am

Sounds like hives......I would tell your dr and be careful as it could be the start of your body mounting an attack against the drug which could escalate x
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Re: Experiences with Copaxone

Postby Ebryan » Sat Jan 12, 2013 5:11 pm

I have been on Copaxone for almost 2 years. I was diagnosed about 5 years ago and was on Avonex for 3 years prior. I'be been having tremendous headaches and vertigo, chest tightness and palpitations, anxiety and fatigue. These symptoms would causually come and go... Until now. Since November this year, all of these symptoms are part of my everyday life 24/7. I have trouble sleeping and have taken almost 2 months off of work. I can't deal with the way copaxone has been treating my body and mind. Nevermind the lumps or bumps and bruising too:( I talked to my neurologist and family doctor but they don't believe it's the copaxone doing this. If its not, then I don't know what is. From reading the symptoms you all have shared and how this needle affects everyone here, I'm sure the copaxine is the root if all this evil. Anyone else had these symptoms as severe as me? How did you cope or what did you do?
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Re: Experiences with Copaxone

Postby LR1234 » Tue Feb 26, 2013 5:30 pm

Get your blood checked for clotting factors I have heard copaxone having an effect on this and might be contributing to your symptoms. Also get liver and kidneys checked to be sure
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Re: Experiences with Copaxone

Postby swissmissme » Sun Oct 27, 2013 8:36 am

Thank you for your post. I got my second brain scan...I asked My Doc as they always ask us in a scale of 1-10 what was my MS with my diagnosis first brain scan aug 2012 --what was I a 1--she said no a 2---and now she said this brain scan is a 6. She said I NEED to go on Copaxin...I do not want to---I read all this stuff--I really like your post....I ask people I hear in my area with MS if the meds have helped...WELL I HAVE A BIGGER PROBLEM___I WAS ALSO DIAGNOSED WITH A MZ PHENOTYPE,,,,a Birth /genetic inherited/ from my parents being mismatched PHENOTYPE---WHAT THIS ALL MEANS IS I WAS NOW AT 58 diagnosed with Chirossis of the liver--a fatty liver and PORTAL HYPER TENSION SCORE OF 11--12 is the WORST SCORE...Oh he said--my liver DOC--says my liver is functioning well---perhaps my life was not injured more by this --I rarely drank anything--I do not do illegal drugs---however have used Excedrin- motin and tylen in my life. These are evil I now know....People need to know everything they put in their mouth goes thru their liver....My mismatched phenotype means I can ONLY use Copaxin because it is a shot...It wont hurt my LIVER...OH JOY....I would rather not. I am also VERY ANEMIC my IRON LEVEL IS VERY LOW NOW....AND you say Copaxin hurt urs..I also lost 18 lbs recently and need to lose more for my liver and everyone says copaxin makes u gain weight--I recently got over sciatica from falling being in PAIN FOR 6 MONTHS before asking for physical therapy--at a different location from the Cleveland Clinic...UH physical Therapy in Westlake has helped my sciatica plus not driving my stick shift car. So--have anemia have chirossis, have recovered from sciatica...do not want to gain weight---Please anyone reply...

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