Any Other Copaxone Users Around?

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Postby Baumer » Mon Sep 19, 2005 10:31 am

Hi MK,

I was just recently (2 weeks) switched from copaxone by my neuro. I stated my concern about the 3 times-a-week flu like symptoms with Rebif. Because of my concerns, he suggested Avonex. I wasn't real keen on that either, mainly because of the needle length and the fact that Avonex doesn't have some sort of auto-injector. He stated that an intermuscular injection has far less likelyhood of injection site reaction and the once a week flu would be far more tolerable than three times a week. Once I started on Avonex, I was very suprised about how painless the injection was (I've done two so far). I still "shake like a leaf" when I am injecting, but it's due to the sight of a syringe hanging out of my leg rather than any pain.

Also, my understanding is that the flu-like symptoms that people feel will begin to dissapate after a couple of months for the majority of people. I'm looking forward to when that happens. I inject on Thursday nights and still go to work on Friday. I must admit that my sleep on Thursdays isn't real great, but by doing it then, I have the whole weekend for feeling good and if I travel on the weekend, I won't have to carry along my medicine.

Remember, it is also very important to get blood tests every three months while on an interferon.

Hope this helps a little.

Aaron
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Postby bebe » Mon Sep 19, 2005 8:22 pm

Aaron-

Its interesting that your Neuro suggested Avonex due to flu like symptoms. In the comparative trial between Rebif and Avonex, the flu like symptoms were less with Rebif than Avonex (statistically significant).
The reason is that with Rebif your blood levels stay steady and your body has a chance to become used to the drug. It is a common misconception that the flu-like symtpms are worse because its dosed more often, but they actually go away faster. Some people cant ever get over the effect with Avonex because the blood levels of the drug are up and down due to once a week dosing. If the flu-like symptoms with Avonex dont taper off for you, you may want to consider the switch to Rebif.

Be
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Re: copaxone and hives vs. rebif

Postby bebe » Mon Sep 19, 2005 8:32 pm

The side effects are daunting--I need to work every day--is this possible if I take Rebif?

The worst side effect is flu like symptoms, but not everyone gets them and to the same degree. You should call MS Lifelines and ask to be hooked up with someone on Rebif (via phone). Its a great way to get info from someone who is on the therapy. On these boards, you usually hear the negative reports. Many people go on with their lives, including working every day, just fine.

Also, do some research on efficacy, afterall, its the reason for it all.

Good luck.
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Postby Baumer » Tue Sep 20, 2005 9:55 am

Hi bebe,

Thanks for the info and clarification. You are correct in the fact that Rebif had a lower occurance of flu like symtoms than Avonex. As far as the severity of the symptoms, I'll have to take your word on that.

Other considerations that were taken into account that I didn't mention before were NABs and liver issues. From what I have heard and read, I belive that both of these issues are less with Avonex, although I could be wrong on that also.

Thanks,
Aaron
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Postby bebe » Tue Sep 27, 2005 6:16 pm

Hi Aaron-

No, you are right. The liver enzyme elevations are slightly higher with the higher dose interferons, although all have warnings. Interestingly enough, its with the mild to moderate elevations that you see this difference. When it comes to anything severe (grade 3 and above), its actually equivalent between the drugs- less than 1%. Most elevations occur within the first 6 months of therapy anyway, and most resolve spontaneoulsy. There are a small fraction of people that will have ongoing elevations despite the dose.

In terms of NAbs, well....what can I say? What a controversial topic. Its so complex and certainly not black and white. NAbs can certainly decrease efficacy but it doesnt "neutralize efficacy". Again...back to the head to head trial between Rebif and Avonex, you can see that even the patients who were NAb+ on Rebif still did better than the patients on Avonex regardless of their NAb status. To confuse matters further, most people will go back and forth between being NAb+ and NAb-, only the people who are persistently NAb+ seem to have the greatest effect on efficacy long term- for Rebif about 11% at 8 years, and for Avonex about 3-5% overall. Go with the most effective therapy overall and dont worry about something that you cant predict...and something that happens in the minority of people anyways.

Take care!
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Hives

Postby andrea » Fri Dec 30, 2005 10:30 am

Hi,
I was on Copaxone for 15 months and everything was great. 3 months ago I developed serious hives (3 doctors and shared solutions all insisted it wouldn't be the Copaxone, since I'd been on it so long) Well the welts have stopped when I stopped the injections, this second time it's getting better, but still itchy and rashes. Has anyone else had experience with this? If so, have you tried to go back on it after a break. I've had good results aside from this, wheather it's from the Copaxone, genes, dr. Swank's diet or just good luck.
Thanks
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Postby Melody » Fri Dec 30, 2005 2:34 pm

Hives are usually allergy based. Dumb question as I guess I should no the answer since John is on Copaxone but does copaxone build up in the system and if so is there a time when the levels become toxic???? :oops:
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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Postby HRWeenie » Wed Jan 04, 2006 8:03 pm

I get hives about every other week on Copaxone. Luckily they're not too bad - so I just ignore them. I've even gotten them on the bottoms of my feet. Been on Copaxone since April 2005 after two Tysabri treatments. My dr. says the hives are unrelated to MS or Copaxone -- but I never had them before.
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Postby Melody » Thu Jan 05, 2006 8:42 am

HRWeenie wrote:I get hives about every other week on Copaxone. Luckily they're not too bad - so I just ignore them. I've even gotten them on the bottoms of my feet. Been on Copaxone since April 2005 after two Tysabri treatments. My dr. says the hives are unrelated to MS or Copaxone -- but I never had them before.



What makes your Dr. assume they are unrelated to copaxone. I can see him saying not MS related as they are not a symptom of MS are they????? For him to say they are not related to the copaxone then he would then have to know what is causing them wouldn't ya think???? :wink: Keep in mind hives usually signify an allergic reaction which in my opinion is actually hard on your system since you do have MS. Even if it isn't the Copaxone I'd be asking him to tell you what it is so you can eliminate it from your system as what ever is causing the hives is a toxin to you body. Sometimes you need to get more than a glossed over answer from the Dr. Dig deeper this is your quality of life you are playing with.

8O 8O 8O 8O
After you inject COPAXONE®, call your doctor right away if you develop hives, skin rash with irritation, dizziness, sweating, chest pain, trouble breathing, severe pain at the injection site or other uncomfortable changes in your general health. Do not give yourself any more injections until your doctor tells you to begin again.

http://72.14.207.104/search?q=cache:_gx ... ves+&hl=en
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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just started!

Postby Etain » Fri Aug 03, 2007 11:26 pm

hey guys :)
i just started copaxone about a month ago. So far, so good...the only rxn i've had so far is the burning after injection, and the swollen itchy spots for a couple days after. The only thing i'm really worried about is lipotrophy...i REALLY don't want that to happen--and i'm pretty thin, so my injection sites are limited, which also worries me :(
how common is lipotrophy? as of yet, all of my injection site rxn's have gone away completely w/in few days.
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Postby DizzyDean » Sat Aug 04, 2007 8:51 am

I've been on copaxone 7 weeks, side effects have "progressed" as follows:

week 1,2 - beesting 20 min, red lump 2 days, no itching
week 3,4 - no beesting, red lump 2 days, itchy
week 5,6 - no beesting, red lump 20 min, no itching
week 7 - no beesting, red lump only on some sites for ~10 min, no itching

Still no idea if this drug is doing me any good, but at least its tolerable.

I have read that the lipoatrophy occurs far more frequently in women vs men. No signs of it in me yet TG (I'm male).
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Copaxone

Postby Mardie » Sat Dec 01, 2007 11:02 am

I had to stop this for the effects of hives and breathing. I went to LDN 6 months ago with wonderful results. 85-90% reduction is relapse as compred to 30% on CRABS drugs. I never felt well at all while on Copaxone. The MS Society supports the CRABS drugs as the manufacturers donate a tremendous amount of money to the society. It's all about money!! That's why they support these drugs, not because they work. As you may know LDN is a generic drug with no patents therefore there is no drug manufacturer that will support it.
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Postby cheerleader » Mon Dec 03, 2007 10:34 am

Hi Mardie and all-

My husband was started on Copaxone since his first attack in 3/07. He was dx with MS after lumbar puncture and MRI. He had many lesions on his brain and one enhanced on his cervical spine. He did have a few slight injection site bumps and lumps and some stinging with Copaxone, but nothing to deter him from continuing.

He has not had an attack since (thank God) and most of his presenting symptoms have cleared up (no more numbness, pain) I watched him run with my son over Thanksgiving vacation, and tears came to my eyes. Never thought we'd see him do that again. He just had a check up with neuro and has no disability, except fatigue.

I also have him on many supplements and we've changed his diet a bit. We'll never know for sure if the Copaxone was the only contributing factor to his remission, but he is quite satisfied with continuing. Copaxone is not an interferon, does not mess with his natural immune system and healing process, and replicates myelin. For him, it's been a gift.

Try whatever works for YOU. Everyone's disease progression is unique. We have no idea what the future holds, but heck, who does?

wishing everyone the best,
AC
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Copaxone

Postby Mardie » Mon Dec 03, 2007 11:02 am

I am happy for his recovery. It's just a matter of time until another exacerbation will occur. I always recovered fully from my past exacerbations but as I aged I no longer could recover fully. I've been fortunate that way. I did OK on Copaxone for 6 years although I never really felt very well and never really fully recovered. Thought I just had to live with it. When I reacted badly to Copaxone and refused to go to interferons as my doc recomended, I tried low-dose Naltrexone and realized I had never felt better in 20 years. I truely wish I had known about it many many years ago for I feel my MS may not have progressed as soon. It may not be a cure but if progression can be halted then quality of life can remain good far longer.
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Postby daverestonvirginia » Thu Dec 06, 2007 8:39 am

Mardie, I think you know that it is not necessarily true that "It's just a matter of time until another exacerbation will occur". That's either one of the the good or bad aspects of MS, we just never know. Some people try everything they can do and nothing works, others do not do anything and are fine. Such is the beast we are dealing with. Dave
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