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.

UPDATE

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.

What Should I Do

IPIR happened again tonight the only difference is that it lasted for two minutes. It is times like this when I just do not know what to do.

I have an appointment with my neurologist next Tuesday, but I know I have to call and tell her about my experience tomorrow. It may be time for me to stop injecting myself daily with Copaxone. If that is the case, I am not sure what form of therapy I will try to slow the progression of MS. I know I cannot take Avonex because of the severe side effect I experienced from drug. I never tried any of the others, but I do not know if I want to.

What should I do? For now, I am not going to worry and I will wait and see what my options are.

Letting Go Of My Fear

After injecting Avonex into my muscle weekly for a year and injecting myself daily rotating between my stomach, arms, thighs, and hips for three years with Copaxone. My symptoms are still slowly worsening, but I am still bless because I continue to have use of my legs, eyes, cognitive, and coordination. I’ve lived with pain since the age of 28 and was told I had Fibromyalgia and Chronic Fatigue Syndrome until an MRI and Spinal Tap showed I have Multiple Sclerosis. I honestly believe my problem was Multiple Sclerosis from the start, but that is irrelevant now.

The recent pain I experience would have knocked an elephant down. The pain was in every fiber of my body I became desperate to make it stop. At the present moment I am thankful to be pain free right now, the morphine patch is working.

I never ever ever want to feel that kind of pain again. My Neurologist scheduled me to have Solu-Medrol infusions every month and she also suggest I try the new MS therapy drug Tysabri because it is proving to be effective for MS patients. My hesitation of trying Tysabri was because of possibly contracting Progressive Multifocal Leukoencephalopathy (PML). As I thought about it all of my drugs have severe side effects. Just last year the chemotherapy drug methotrexate started out wonderful for six months before it went toxic. If I was willing to take chemo to feel somewhat normal after being told I could get cancer. Why should I not try Tysabri to give me hope for a better quality of life and the feeling of normalcy? I don’t know if it will or will not work for me all I know is I have decided to try Tysabri as my new drug of choice to slow the progression of my multiple sclerosis.


Thank you Lauren, you were my angel at a time I needed one in my life. Watching you on your video gave me hope for the day when my MS progress to that point. You are a true inspiration!

Tonight I did not inject myself with Copaxone and I will not be taking my schedule Solu-Medrol infusions. I have to be thirty days free of steroids and Copaxone before I can start Tysabri. According to my calculation I should be able to receive my first Tysabri infusion in September. I would be lying if I said I didn’t have fear about the change in my medications and MS therapy drug.

Having HOPE is better than letting FEAR stop me from putting up a good fight living with Multiple Sclerosis.

Still Not My Time...The Choice Is Not Mine To Make

My frame of mind is better. When I opened my eyes I didn’t expect to still be here, but I am bless that I am. I know longer wanted to pick up the gun and shoot myself. The mind living with multiple sclerosis can become so confused to the point all you can think about is ending life.

To ease my pain and suffering I would have inflicted pain, confusion, guilt, and hurt to my family. I lost control of all my rationale thinking during a temporary mental lapse in judgment. I allowed the worsening of my symptoms from the heat
cloud my better judgment. I allowed the heat to imprison me inside my home again instead of living life.

The last time I became that suicidal is when I had to inject myself with the inch and a half needle into my muscle to control my ms symptoms. That was years ago and suicide is one of the serious side effects of Avonex. Of course I was immediately taken off of it and I had been injecting myself with Copaxone since. Copaxone is not known for causing suicidal tendencies, but I will mention to my neurologist how close I came on July 07, 2007. I honestly didn’t have control of my actions and that is something to be concern about. I do not want to take my life by my own hands. Did the heat affect my brain to that point? I don’t know, all I know at the time I felt hopeless and tired of living.

Because of my actions it is time start seeing my psychologist again. He was able to see me today and it was decided it’s important to come back to find out why I suddenly and out of no where wanted to die. If anyone can help me understand my actions on July 07, Dr. J is the one to help me. He is the one who gave me the courage years ago to leave my house, get over fear, panic and anxiety attacks when I allowed my illness to control my life. He is also the one who freed me from my self impose home prison.

I feel embarrassed admitting and exposing to the world that I wanted to take my life July 07, 2007. The embarrassment is admitting I too can become weak and loose control of my rationale thinking. It takes courage to realize I needed help and do something about it and I have always been a courageous person, I just lost sight of it July 07, 2007.

I guess God is not finish with me after all.