I don't think I am going to do copaxone now

A board to discuss the Multiple Sclerosis modifying drug Copaxone

I don't think I am going to do copaxone now

Postby LR1234 » Wed Sep 09, 2009 8:53 am

Hi,
I wrote in another post that my copaxone had arrived and I was planning to take it. I have read a lot of research in diet about proteins leaking into the blood stream which activates the immune system (leaky gut syndrome) I then thought about copaxone. Now the idea of that is to inject proteins directly into the blood stream, now whilst it acts as a decoy for your body to attack whilst you are taking it, if you decide to stop it your immune system is revved up for an attack so will go after the real myelin again maybe at a greater rate....I saw this on another message board:
Once my liver is ok again think I will go back to LDN and stay on the abx
Warning June 11, 2009 (Wikipedia)
"Besides its beneficial effects, Glatiramer acetate also induces immune reactions and an immune memory against myelin, in particular against myelin basic protein (MBP). [6] This has two important implications. Firstly, Copaxone might increase the risk of an individual with CIS by a large factor [7][8] since about 40% of these patients have not yet mounted an immune response to MBP. The study behind the FDA approval of the drug for Copaxone (the PRECISE trial) had the existence of two large (>6mm) active lesions at CIS presentation as enrollment criterion, and there exist no data on patients with less severe presentations of CIS. The high risk patients singled out by PRECISE are more likely to already have mounted an MBP immune response [9]. Approval of the drug for CIS in general is misleading and potentially hazardous. Secondly, if ever discontinued by a patient, the beneficial effects provided by continuous administration of antigenes ceases, and the harmful effects of induced immune reaction against MBP take over. This could negatively affect (i.e. increase the relapse rate and disability progression) of MS patients who interrupt Copaxone for any reason, for example if they decide to switch to a new drug".
Posted on 06/18/09, 03:06 pm
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Postby patientx » Wed Sep 09, 2009 10:15 am

While you may have other reasons for not taking the Copaxone, please do not let this passage you saw sway your decision. First, you have to take what you read on Wikipedia with a grain of salt, and it definitely shouldn't be relied upon for important medical decisions. I have seen things posted on Wikipedia that were just plain wrong; this is a product of having volunteer editors. Having said that, I tried to find the article quoted in the post you saw, and couldn't locate it. Maybe this passage has been struck from the Wkikpedia article.


But some of what is posted is not entirely correct. Copaxone has been touted as an MBP "decoy," and I am not sure where this comes from. While it's mechanism of action is not fully understood, I think theories are going away from it as a decoy. I think the basic idea is that Coapxone will convert certain immune cells to other, less damaging type cells. Doing a quick search, I found this:

http://www.thisisms.com/article-266-thread-0-0.html

I have read some other similar articles recently, I 'll see if I can locate them. And, copaxone doesn't induce immune responses to MBP. That's a result of the MS, and taking Copaxone won't increase this activity.

If you have concerns like these, maybe it would be good to discuss them with your neuro.
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Postby LR1234 » Wed Sep 09, 2009 10:43 am

Its just so hard to know what to do! I just want to get better!
I will want to stop the copaxone at some point as I want to have children (maybe in a year) and I read the study about those that stopped copaxone after 4 and a half years progressed quite rapidly to the ones that stayed on the copaxone and I just started wondering whether those that had stopped it might have been better off never starting it.
After my major relapse I think I am almost back to how I was before (almost) no disability so I just feel like I don't want to rock the boat but I also don't want to do nothing! I will get my liver results back next week and I suppose if my liver is still struggling copaxone will be the only choice...if its ok then I can stick with the abx and maybe add the LDN back.
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Postby notasperfectasyou » Wed Sep 09, 2009 10:55 am

I don't know how to argue both sides at the same time....

I'd simply say, Kim stayed on Copaxone until it was clear that abx was doing stuff that was beneficial in "undeniable" levels. With CRAB's you're generally looking at "I didn't get worse today". It's kinda like taking vitamins. I take vitamins, but I don't have sharp enough senses to know how much healthier I am today for taking them. I see Copaxone this way.

Now, after 6-months on ABX, Kim was remarkably different. You can see it in the videos and that's just a part of it. I do think there is use and a place for Copaxone, I'd not write it off entirely unless you have results elsewhere. Ken
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Postby patientx » Wed Sep 09, 2009 11:23 am

LR1234 wrote:Its just so hard to know what to do! I just want to get better!


LR,
I certainly understand this sentiment. And I wasn't trying to sell anyone on Copaxone. I just thought that the message you saw on the other board was filled with inaccuracies.

Do you know which study showed that those who stopped the Copaxone progressed more rapidly? It sounds like it is worth reading.
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Postby LR1234 » Wed Sep 09, 2009 12:15 pm

Hi Patient, I know you were not trying to sell anything to me:) and I am pleased that you have pointed out the inaccuracies in the Wikapedia post.
I don't remember where I read that copaxone info. I will try and find it again if I can!
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Postby Wonderfulworld » Wed Sep 09, 2009 1:03 pm

Hi LR
I agree with the other posters about Wikipedia...it can have inaccurate info there sometimes. I thought the Copaxone idea is that it helps convert T1 cells into T2 cells - anti-inflammatory.

I will want to stop the copaxone at some point as I want to have children (maybe in a year) and I read the study about those that stopped copaxone after 4 and a half years progressed quite rapidly to the ones that stayed on the copaxone and I just started wondering whether those that had stopped it might have been better off never starting it.

THIS HAS NOT HAPPENED ME AT ALL. Everyone is different so what happens to me might not happen to you.
I started Copaxone 7 years ago, took it for 4 years, came off it for 4 months, went back on for a year, came off it for 3 months, went back on it for 6 months, came off it for 15 months, now back on it 17 months. I have an unchanged EDSS. I feel extremely well and my MS has flared up once this year but it resolved 100%, so no progression at all. In fact my neuro increased the time to my next appt, I was doing so well. I would hate for you to base your decision on something that may not be true. Ring your neuro and discuss your concerns with them.

By the way I'm not a Copaxone-loving patient. I have experienced extensive lipoatrophy after 5 years on it, but my life now is so much better than it was 7 years ago. My legs work but are not going to win a beauty contest.

Don't rule it out, is all I'm saying.
Best of luck with your decision. :wink:

Edited to add: who knows what rebound effect ANY of the MS drugs might have. All I know is that Copaxone has not had any rebound effect on me and I interrupted it 3 times in the last 7 years.
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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby guitarguy » Fri Sep 25, 2009 3:18 pm

I have been on Copaxone for 15 years. dx 18 years ago. EDSS is 1.0

I think it's been a fantastic mediation for me. I never really had any side effects except 2 times a year I will get bad chills/shakes that last about an hour or two.
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