Thursday, April 10, 2008

No! No! No! To Copaxone

Like the Amy Winehouse song..."No No No to Rehab", I am singing "No No No to Copaxone." It happen again last night, this time it forced me to the emergency room. Immediately after my injection my heart and chest felt tighten to the point I could not breath and became dizzy. I start itching like a heroin addict looking for a fix and my body broke out into hives. As much as I hate calling 911 for an ambulance to rush me to the hospital, last night was no time to be hating.

By the time they arrived, I was still struggling for air, itching like mad, and my blood pressure was off the charts. The EMT's were great they hooked me to some oxygen, put the IV in with one stick, shot me with some benadryl and rushed me to the hospital. I felt that I was dying...I obviously survived because I would not be writing this post.

After hours in the ER hooked to the machines while oxygen flowed through my nose and a shot of Medrol I pulled through. I do not care how rare this reaction one can have being on Copaxone is, I am through with Copaxone. I trusted my doctor the first time I had an IPIR reaction and she said, "Its so rare and random you will probably not experience it again. Copaxone is working so well for you I do not think you should stop taking it". Hell, the second time came less than six months from the first time and it was worse.

Fool me once shame on you, fool me twice shame on me...No! No! No! to Copaxone

It is time for me to do research on the other disease modifying drugs except Avonex (been there done that). I have a feeling when I talk to her later today and she have me come in she will suggest Tysabri. Personally, I am not feeling Tysabri and I do not know enough about Rebif and Betaseron. I do know I want to continue to slow the progression of multiple sclerosis, so I have no choice put to select another disease-modifying drug.

I get so frustrated with MS and its unpredictability; I damn sure did not think my evening would end with an ER visit. I had romantic plans after receiving some unexpected roses and a beautiful card from my better half. Well, all is good now...if any of you have insight on Tysabri, Rebif, or Betaseron enlighten me. I still plan to research the drug, but it would be nice to know how it has been for any of you who are taking one of the three I have to choose from.


I was too chicken sh*t to try Tysabri and I did not want to go through the motion of taking Rebif or Betaseron. Therefore, I went back on Copaxone in May 2008. Hopefully, I will not have another IPIR.


mdmhvonpa said...

I'm starting to get the feeling that copaxone is not the right treatment for you. Call it a hunch.


I second the "not right treatment" vote. I have not experienced the IPIR (knock on wood I never will) but that sounds a little more than "you will think you are having a heart attack or going to die, so lie down somewhere calm and let it pass in about 10-30 minutes." Wow, your portrayal is so much more intense.

Lauren said...

Oh D,

I'm so sorry to hear of your horrible experience with Copaxone. But that is all over now and you can put that in your past.

You happen to know quite a bit more about Tysabri than you give yourself credit for as we've discussed Tysabri quite a bit. You also know how to reach me D if you should have any additional questions about Tysabri.

By the way, I am scheduled for my 20th Tysabri infusion next week, and I can hardly wait for it! I have not had a relapse nor any disease progression since October 2006, wooooohooooo... seriously D, write me any time.

My e-mail address is

There are currently over 23,000 MS patients on Tysabri therapy, and most of us look forward to our therapy since we only received an infusion once every 28 days, sure beats the heck out of the shots (Rebif, Betaseron, and Copaxone) with almost none of their nasty side effects.

Considering the ABCRs efficacy in preventing further relapses and slowing the disease process down ranges from 29% to 34%, for me it is easy to choose Tysabri's superior 67%.

It is so nice to feel good about the better quality of life that most of us have during each month that we live with this god-awful disease, thanks to Tysabri.

No matter which D.M.D. you choose to fight your disease, I support you in your choice... just make sure that it is a fully informed choice.

Feel better soon, real soon dearheart... all my best,

Lauren :)

Blinders Off said...

Mdmhvonpa and Lisa:

It was the right treatment for the past 4 and 1/2 years. I guess my body had enough of Copaxone.

I honestly thought I was dying, thank God my husband was home. My family is my rock and they give me the strength to keep fighting when I feel like letting go.

Blinders Off said...


I have been reading the success you have been having with Tysabri and I also been reading other Tysabri success stories.

I know more about Tysabri than I do about Rebif and Betaseron. I have been researching since I came home from the ER.

You will be the first I contact on the day I have to start another treatment, for now I am taking a break from any treatment.

Thanks for the support:)


That Girl Boo said...

WoW! that sounds so super scary,
keep your head up and keep your faith, I often try to write articles on health related topics, and steps on detoxing our bodies ourselves.

It seems to me that Doctors often treat all of us the same way with the same medications. The fact is were not all the same, we eat different, we sleep different, and we have a different genetic make up.

I know this may sound a little bit wild but from my experience I try to do a few things when I can re: drugs.

-Look at who manufactured the drug

-what are the exact ingredients in that particular drug

-what herb, root, fruit or veggie some what mimics the drug

good luck sis/ps very nice blog I will be sure to stop by again

Blinders Off said...

That Girl Boo,

Funny you mention detoxing, that is what I am looking into to do before I start a new treatment which is going to be Tysabri in six weeks.

You are welcome to drop a line anytime.

日月神教-向左使 said...