Saturday, February 24, 2007

Rituxan a Go Go!

Since that horrific day in September, all my docs felt that my only option at this point is to receive two Ritxan treatments. Now, Rituxan/Rituximab is not FDA approved for MCTD or Polymyositis. Therefore, United Healthcare denied my treatment. Sure...why not...another fight on my hands.

I contacted Dr. Fred Miller at the NIH to see if I could get into his Clinical Trial, but he said I don't fit "in the box." (No one ever said this was going to be easy...but come on now!)

Dr. Harry Spiera has had great success with his myositis patients and Rituxan. Dr. Peter Rumore is using Rituxan for his RA patients with great strides. Cytoxen was mentioned by Dr. Mark Gudesblatt, but as a last resort. It is a very dangerous drug.

Meantime I am back on prednisone (let the fat begin) and I saw a pain management specialist who gave me a nightime pain killer to add to my ambien regime. My body became extremely weak again, especially my right arm and hand.

Good news...after seeing Dr. Rumore, he said he couldn't stand the insurance company any longer. He said he wants to cure me. So, he contacted Genetech, Inc. who manufacturers Rituxan and they offered to send it to me for FREE!!! Yippee!

The treatment protocal--One Course of Treatment: (2 infusions) Day one, 1000 mg in intervals for 6-8 hours. 15 days later, 1000 mg in intervals for 6 hours.

Rituxan works by targeting specific B-cells and selectively reduces them in the blood.

Day One: February 5, 2007 I had my first Rituxan infusion. The infusionist started it slow and kept checking my vitals every fifteen minutes. First they gave me a bag of cyumedrol (steroids) and saline, then started the Rituxan. Around mid afternoon, a headache came on big the infusion rate was slowed down. As the bag finished, they added some more saline and had me sit still for a half hour. I went home and felt okay for a few days until the steroid wore off. Oy...I felt like I got hit by a truck...and had the worse case of the flu.

Day Two: February 19, 2007 My last treatment started a bit late, but it went extremely smoothly. They first gave me cyumedrol again with saline, then started the Rituxan. Vitals were once again taken every fifteen minutes, then spread every half hour. I finished the treatment in six hours, and then sat around to be sure I was ok. The next two days were fine, but I am now in severe pain...undescribable actually.

The infusionist nurse told me it would take 2-8 weeks to see if the drug is actually working. I have an appointment with the doc in two we must continue to pray and keep good thoughts until then. Just wish the weather wasn't so darn cold. Damn!

Good news is that I am in a wonderful new rock 'n roll band since last fall. There is nothing better than singing in front of a large, live audience. Since they are waiting for my health to improve, we are on hiatus...and the guys are learning new tunes. We recorded a demo CD which can be heard at: (I hope you will check it out!!!)

Performing with my new band. Happier days ahead, we hope!


Anonymous Anonymous said...

I just found your blog...gotta say it was perfect timing.

I was diagnosed with Polymyositis 9 years ago and it has been a fight ever since. And really hard for people who have not had to live through or be close to someone living with it to understand. I have tried everything out there and thought we had found a good combination with methylprednisolone, cyclosporin, IVIG and iron transfusions until today. Today they told me it was no longer working and now we have to see if we can get Rituxin from the company on compassionate grounds because it simply is not covered for this disease.

I guess I just needed to read that I am not alone in this journey...

1:29 AM  
Blogger Jutta said...

Hi, I found your blog while looking for "Rituximab and MCTD"

I also have MCTD and have had 4 weekly infusions of Rituximab in Feb/March, one in June and the next in Sept. (each 1000mg)
Before each infusion they give me one with predisone, an antihistamine and one for nausea.

I still have to take prednisone (8mg) calcium, and a Bisphosphonate called BonViva.
I'm feeling really good, have a lot less pain than before.

It took almost 3 month for the Rituximab to kick in so don't give up on it and most of all don't give up on yourself.

Hugs from Germany

3:25 PM  
Anonymous Anonymous said...

MCTD does not have its own advocacy and organization to push for medications. I too, am lost in the maze of the algorithms of connective tissue disease and have just been denied IVIG after being on it successfully in the past, and am in for a fight. (Same insurance company you are dealing with) I won't get into the specifics of my disease at this point, because, it involves several connective tissue disease entities and is too complex to whine about on your blog, however, what I am hoping is MCTD can get it's own advocacy group. It's own web page. Thank you for calling attention to this disease and sharing your personal story. It has given me some hope that maybe, I can get some compassionate doctor to assist me. Again, thanks for sharing.

1:44 PM  
Anonymous Anonymous said...

I found your blog and about Rituximab for Polymyositis and it couldnt have come at a better time. I am trying to make my decision to start this treatment. I would love to hear how you are responding to it now.

10:19 PM  
Blogger Bridget said...

Thanks for your strength. I think it is amazing. I was diagnosed w mctd/lupus about 5 yrs ago. I feel like my health has gone on a slow downward spiral. I was forced to stepdown from my job I had due to being gay, and also from having taken fmla for two weeks. I am very happy with everything I have, but yearn to do more. I am wandering where everyone finds the inspration. I love God, and have a spiritual life with him.

10:22 PM  
Anonymous Anonymous said...

i found your blog , im fifteen years old . Barely started 10th grade and in the summer of 9th i was diagnosed with lupus now i have recently been diagnosed with mctd . My doctor highly recommends me getting rituximab but after reading about it some more im getting scared . some people die within the first 24 hours . im already scared of my life being shortened by mctd but now this .... if anyone can give me advice i woulld love it my email is

9:46 PM  

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