Experiences with Copaxone

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Postby revms » Wed Dec 02, 2009 7:10 am

I just had my first copaxon shot last night and to say the least I am not impressed. Having taken avonex for 3 years and suffering with the side effects that put me out of commision for at least a day. (a bad hangover minus the fun). The idea of daily going through this sucks! My recent MRI indicated another lesion and the neurologist thought this indicated the avonex treatment wasn't successful.
I have not had a relapse for three years, the major factor of the ms is the fatigue.
I'm not going to continue the copaxon. I would like to have the ultrasound to see whether or not the circulation of the jugular veins is an issue. I'm trying to find a way to get tested and the then see if Dr. Zamobini's treatment would be a better way to go.
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Copaxone experience

Postby brightangel » Wed Jan 06, 2010 4:16 am

Hello,

Have been on Copaxone since December 2004 and have not had any new symptoms develop. I have only had about three minor relapses of original symptoms and I have been totally relapse free for two years and four months.

Yes, I get welts that go quickly, and a bruise when I hit a capillary and draw blood. Absolutely no lipotrophy ( I am fanatical about injection rotation). I'm from Australia, the way I do my injections is to have a warm shower, find the spot, pinch up the skin, use autoject at 8mm, and then firmly rub the injected area. The purpose of the massage/rubbing is to disperse the drug into the lymph system as soon as possible. Using a cold pack post injection stops the injection dispersing quickly.

I've found that with MS drugs a number of people appear to have very quick allergic reactions. There is an argument that MS can seriously mess around with the immune system generally - this seems to be the case for some people.

IT is wise to research the drug you are going to take - Copaxone is based on 4 amino acids that are already present in the body in natural form. The drug is delivered in mannitol, found in lots of lollies. To me it seemed to be the least scary of the chemical cocktails offered and it has worked for me.

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Anyone have simlilar experience?

Postby dancealotagainsoon » Wed Jan 20, 2010 8:48 am

Hi all ! I was dxd'd in late Nov 2009. Just started Copaxone 1 week now. First night violent vommitting- day 2,3,4, all ok and "do-able"- day 5 shivers and heaviness/weakness, Day 6 violent shivers/shakes, Fever and Paralysis from shoulders down. Resulted in Trip to ER with fever of 104.8. ER doc claims side effct of c-injections - Neuro says no- would happen every time I inject if it was a reaction. I'm so very scared and confused. want to stick with the Cop but givng it a few days on antibiotics before starting again. Anyone have any similar experience? Took a few days but am now able to stand and walk as awkwardly as I did... prior to at least... smiling. Leaning towards the paralysis being an effect of high fever- but shared solutions denies high fever as a side effect - only has hayfever listed. I'm still confused! Thanks Deb
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Postby MSmama » Thu Jan 21, 2010 6:40 pm

Deb,

I am on my 11th month of using Copaxone and have not had any relapse.
BUT My first month on copaxone was murder!! High fever with intermittent chills , extreme fatigue (unlike I had experienced previously), sick to my stomach, headaches and pain throughout my body.
I was going to give up but as I didn't know if it was the drug or a really bad flu , I decided to stick with it and sleep & medicate it out. AS I said it took me a month.

Second month onwards was fine. Just welts and a few signs of lipoatrophy developing now perhaps, not sure need a second opinion. Happy with how my energy levels and improved mobility and fitness is going.

Good luck.
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Copaxone is a rip off!

Postby nacho » Wed Feb 03, 2010 10:07 am

I take Copaxone but I think it is a complete rip off! I rarely even take it anymore. I'm really banking on CCSVI being the answer to MS. If it is then all of the drugs that are prescribed for MS are completely wrong. We are trying to knock out our immune systems when in actuality our immune systems are doing what they are supposed to be doing-attacking iron! The medical establishment is trying to down play CCSVI and are quick to raise questions about the risks of having stents put into veins. What about the risks with the $30,000 drugs they prescribe as if it were candy. PML with Tysabri comes to mind. Depending on how screwed up your veins are it will determine how bad your MS is. Copaxone isn't going to make much of a difference either way. If I had to pay out of my own pocket for this shit I wouldn't.
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My Copaxone Experience

Postby jeaneoc » Sun Feb 07, 2010 8:02 pm

I've been on Copaxone for over 6 years, and until now, the only relapse I experienced after the initial 5 months, was when I went off (financial difficulties) for 4 months 2 years ago. That relapse motivated me to continue with the treatment I initially had local reactions, such as the welt, itching, burning, soreness, heat, etc., but those deminished for the most part over time and by using different techniques. After a while the injection site reactions were random and occasional. I do have some lipotrophy that is just plain ugly.

3 weeks ago, I found a 3+cm enlarged lymp node in my right groin. My gyn/uro sent me to a surgical oncologist who feels it is a "reactionary node" perhaps in response to the Copaxone. I've noticed an increase in site reactions - also on the right side. I also appear to be having a mild relapse, with no new symptoms - just a general increase in the regular ones, and severely increased fatigue.

i will be having a ultra sound of the enlarged node to check "it's structure" as per the surgeon. If all looks well, he'll just see me again in 3 months. If it looks suspicious, I'll have a needle biopsy.

I'll also be calling Shared Solutions, and when the results are in meeting with my neuro.

Anyone with similar experiences? :?:
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Postby chort1313 » Wed Feb 17, 2010 6:07 am

hey jeaneoc!!!!


I had the EXACT same reaction!! Been on Copax a little over two years. The lumps in my groins showed up about 6 months after first taking it.

I called Shared Solutions and they put me on hold while they checked with they're "research scientist" to get the data - if this indeed was a side effect. And it WAS. I forgot the % it happened to, but it was a pretty low % of ppl taking Copax.

My neuro told me to go back to my PP just to be on the safe side. He looked at it and told me if I was that worried about it I could get a biopsy done on it.

Yeah, um, nope.. didn't do it... No problem except a little swelling in the groin lymph nodes. I'm not going to worry about it.


Let me know how yours turns out - maybe then after you get your results, I'll have something to worry about -- but I'm hoping I don't, and you don't!!!!!!!!!!!!!!

Good luck!
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love my Copaxone

Postby banderson101 » Thu Apr 01, 2010 9:49 am

Just found this web site and am saddened to see the reactions to copaxone. I have been on it for 13 months. I dont use the auto inject I do it by hand or have some one help when I am shaking too bad. The auto inject just looks painful. My experience has been great. Since starting Copaxone I have had few M.S symptoms. I am back to work, off social security and thriving. I believe that this is because of copaxone. Since starting this med I have quit taking 14 others that just treated the symptoms and caused worse side effects. I am not recommending that you quit taking what your doctor has prescribed but from my experience I dont need them any more and am doing great.
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Postby puffin » Wed Apr 07, 2010 7:01 am

I was dx in Mar 2004 and I've been on copaxone for 6 years, only one relapse, but in the last six/seven months I've had the nasty reactions that some of you have been talking about, blood pressure, trouble breathing, shakes, vomiting, comes on so quickly, and is very scary. I called my neuro and was told that they have heard of this happening, but not as often in one person, they don't know why this happens, but were not concerned to keep taking this drug and will see you in July. I decided to stop taking copaxone and am now taking LDN, my inprovements are astounding. My walking and energy levels have improved significantly and that was after a low dose of 1.5 mg for only 4 weeks.
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Just started.

Postby Parallax » Sun Apr 25, 2010 8:07 am

I was on Rebif for about 6 months, but I had to stop due to rising liver enzymes. Otherwise it did not cause any side effects, and I quite liked only having to take it 3 times/week.

Started Copaxone only 5 days ago, and so far things are going fine. At time of injection I develop a lump at injection site, and have localized pain that lasts for ~15 minutes. Also, I seem to have a strange taste in my mouth for some time following injection. I wonder if anyone else has noticed this, or if its just me?

Will update when I have more information to share. Hopefully Copaxone works, since I cannot take Rebif. My neurologist suggested that Betaseron might be worth trying as there is a chance that my liver will not react in the same way. Otherwise I suppose I'm left with Tysabri, which was recommended to me initially by one of my neurologists. But I require more long term data before I'm willing to start on that. So far, fortunately, my MS has been only mild tingling, with significant MRI findings, aka more legions than are worth counting. So when weighting risk/benefit it is difficult to justify the risk.

I wondered a bit off topic, but it seemed appropriate to the wider context of my situation with Copaxone, for those interested. Thanks posting all of your experiences. :wink:
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Postby jenf » Tue Jun 29, 2010 2:09 pm

Hi All,
I started last night with my first injection.... and they're right; the needle doesn't hurt at all! It's the damn medication that stings like a bee!! That added with the soreness and bruising from the injection site today makes me wonder what the next 365 days will bring. I for one, am banking on the oral drug that's slated for FDA approval in September. I already went down the CCSVI road and found no stenosis. This disease is for the birds...
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
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Re: Experiences with Copaxone

Postby NHE » Tue Jun 29, 2010 11:06 pm

jenf wrote:I started last night with my first injection.... and they're right; the needle doesn't hurt at all! It's the damn medication that stings like a bee!! That added with the soreness and bruising from the injection site today makes me wonder what the next 365 days will bring. I for one, am banking on the oral drug that's slated for FDA approval in September. I already went down the CCSVI road and found no stenosis. This disease is for the birds...


This thread may be helpful for you...

Copaxone Sting Reduction Technique


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Postby tulanian » Fri Jul 02, 2010 5:42 am

New to this forum, but I've been diagnosed with MS for about ten years now. I've been on Copaxone the entire time and have not had any of the bad reactions reported here. Not once have I had the fall-in-BP, tremors, chills, heart-racing reaction nor have I experienced any lipoatrophy. The worst reaction I get is a hives-like rash around the site that itches and feels really warm, but it goes away after about fifteen minutes. Usually it's just a sore spot for a few hours. I rotate my sites daily (but don't pay much attention to the intra-site locations--I just jab where I want) and use the autoject only on my arms (easier for me).

My relapses have been very light, and of course it's easy to start thinking that the copaxone isn't doing anything. However, since I don't know what my experience would've been the past ten years without the copaxone, I trust the research and stay on it.

Cheers,

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Postby joeymia » Mon Jul 05, 2010 3:41 pm

Diagnosed with MS May 2010. Been using Copaxone for 2 weeks now. I have had no problems with the injections. I get a small site reaction and it stings like a ant bite for a good 5 minutes. Followed by a dull pain for about an hour. I do spray Benadryl on the injection which helps.
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Postby Mela » Sun Jul 18, 2010 3:07 pm

Hi Everyone,

I was diagnosed with RRMS when I was 19 back in 2006. I started Copaxone right away and have been on it ever since. I am smaller, so I do get irritated that injection sites are more noticable than the rest of me. I often stick to my hips, because there is more fat - however I started to aquire some scar tissue so I have since gone back to the rotation. I have virtually no negative reactions to Copaxone, or side effects.. which made me wonder for a while if I even needed to be taking it, or if it was working. The past few weeks I grew tired of taking it, I got annoyed that I had to inject myself everyday, it seemed like such an inconvenience. However the past few days I have begun to experience more symptoms than normal. We're in the middle of a heat wave.. so I assumed it was the heat getting to me, but I honestly think that not being committed to Copaxone has had a negative affect on me. Now I am sorry that I have not been better about it.. I would absolutely recommend Copaxone.. and say that even though it's an inconvenience and may sting a little, the pay-off is totally worth it!!
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