Wednesday, May 7, 2008

They Don't Have To Worry Anymore

My husband was not the only person in my family strongly against my decision to take Tysabri as my new treatment to slow the progression of multiple sclerosis, my entire family was against it. They should all be very happy campers when I tell them I will not be taking Tysabri. The decision to take Tysabri as my new treatment was taken away from me after my third doctor visit of the month of May.

Since I had taken methotrexate (chemo) as a treatment for my MS, my white blood cells have not returned to normal. Methotrexate also went toxic in my body after being on it for six months. At my doctor appointment Tuesday, I received the results of the Complete Blood Count; my CBC count revealed that my white blood cells are still low. They are higher than what they were when I was taken off methotrexate, but they are too low to take Tysabri. To the point, without adequate protection from these disease-fighting cells, viruses and bacteria suddenly become much more serious threats.

Although I have been feeling better since I had my last experience, that feeling is slowly disappearing. I am trying very hard not to get down about my present circumstances. The adversary is busy, I am feeling alone and I know I am not alone…I have to and I will fight what this is I am feeling right now…there is no need to worry TM… I will pull myself out of this rut soon.

Emotionally I have prepared myself to take Tysabri well aware of the possible danger. I am aware of the chemotherapy drugs that some MS’ers can take, but I been down that road and I cannot travel it again. I have to prepare myself mentally that I will be injecting myself with a needle again. I am experiencing an emotional rollercoaster that is leaning towards a tunnel of depression. I am not in that tunnel yet, but I feel myself drifting there…tick tock, tick tock, a tick a tick a tick a clock :(



I'm sorry that your choices are becoming more limited. And I know the pull of that dark tunnel. It's power can be so strong.

I'm interested. How did you use methotrexate? Did you take the pills or injections? I take methotrexate for rheumatoid arthritis 25g once a week. But I also take 1g of Folic acid daily to counter some of the negative side-effects.

Lauren said...

Oh D,

I am so sorry to hear that you will not be starting Tysabri, and that you're heading towards a tunnel of depression.

You should not completely disheartened and rule out Tysabri once your immune system has reconstituted itself (the FDA recommends a washout time of between three to six months after taking medications such as Novantrone, CellCept, Imuran, etc.)

Perhaps in a follow-up visit with your neurologist, your immune system will have once again become strong after the metho... but you got that right - tick tock, tick tock, tick tock.

I think of my today's as steppingstones for my tomorrow's..,

I will keep you in my prayers that God continues to hold you in His loving arms and provide you with His peace that surpasses all understanding.

All my best to you dearheart, please keep us posted...,


Blinders Off said...


I was taking 15 mg once a week in a pill form. A pharmacist did tell me I should have been taking folic acid while I was on it, but I was not prescribed folic. I had a serious conversation with my neuro when I found that out, I blamed her for dropping the ball...she should have known better when it came to prescribing a lethal drug.

Blinders Off said...


Thanks for the comment and prayers.

I was getting close inside the "D" tunnel. Getting out of my blog house and visit helped me put on the brakes :)

Now, I have to figure out what I am going to do.

Diane J Standiford said...

Copaxone is my drug. I got used to the shots. With your hubby's help it will become a breeze. You can go off, take a break, go back on (wait 6 months to take breaks, I think by then your immune susyem has changed.) I ain't no Dr., this is advice from experience. I keep thinking soon Copaxone-like drug will be in pill, they are working on it. Slap the spot first then insert, not too deep is fine (as long as it doesn't bubble out or cause a puff.) And when it doesn't all go in--no sweat. Just do the best you can, some is better than none. My first premo neuro told me this. The docs at getting paid by Novantrone now because 15 years out they see patients are same place they would have been. My opinion. If I had the means I know I could PROVE this.

Blinders Off said...


It has been over a month now that I have not injected myself and the
way my body is feeling I have to get back on something fast.

My white blood cells has been low since 2004, they were extremely low when I was methotrexate. They have come up some, but not back to the normal range.

I feel like I am caught in a difficult situation, but I have to do something before things begin to get worst for me.