Tuesday, January 1, 2008

Faith, Hope, Tysabri

It's 2008! Happy New Year! This posting is about me relating a Bible passage to my investigation of going on Tysabri.

I'm currently sitting at my desk at home, where I have part of Romans 5 posted. It says:

"Therefore, since we are justified by faith, we have peace with God through our Lord Jesus Christ, through whom we have obtained access to this grace in which we stand; and we boast in our hope of sharing the glory of God. And not only that, but we also boast in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God's love has been poured into our hearts through the Holy Spirit that has been given to us."

I think of this passage often, what it means, what it means to me as an individual, particularly as an individual with MS. I believe that if I do not give up, so if "I have MS" but "MS does not have me" that then yes, suffering will produce endurance. Recently I had an exacerbation followed by an episode of depression resulting from the steroids. But I've got through that, although at a low point I wondered if I would. That resulting endurance then did enhance my character, because with each relapse, I do have thoughts that drive me forward, that keep me going, that build my character. That character then does produce hope. Maybe in this particular case of my exacerbation, it's thinking about going on Tysabri--for me that possibility is endurance and character. The endurance is thinking about Tysabri, the character is my investigation into it. I'm going to a session on infusion therapies, and will ask a lot of questions. Years ago, I would have been silent, and just listened. Lastly then, character produces hope; maybe this hope is that Tysabri could work for me, that I could be one of the lucky ones who gets tremendous benefit from it. Could this hope disappoint me? Romans says no. It could disappoint me, but maybe then I view, if Tysabri doesn't work for me, that maybe there's a learning there for someone else, and maybe somehow that is God's love shining through.

So can I look at it this way, right now, during this time? I think doing so helps me to link an eventual decision with being at peace with that decision.


Lauren said...

Hi "faith",

My name is Lauren and I have had 16 infusions of Tysabri thus far. It has my MS stable, and I have not had a relapse nor any disease progression in over a year, woo hoo!

You said: "Lastly then, character produces hope; maybe this hope is that Tysabri could work for me, that I could be one of the lucky ones who gets tremendous benefit from it. Could this hope disappoint me?"

Please dearheart, let me state that the Tysabri label indicates in part: "TYSABRI® is indicated as monotherapy for the treatment of patients with relapsing forms of multiple sclerosis to delay the accumulation of physical disability and reduce the frequency of clinical exacerbations."

If you have not had MS for a long, long time, it is quite possible that you may see improvements as your body starts to heal itself with the help of Tysabri reducing the amount of inflammation cells(T cells) from crossing the blood brain barrier (BBB) and entering the central nervous system (CNS)where they continuously attack our myelin. This is of course if the damage done by prior relapses is not permanent.

I have great faith in Tysabri, and great hope as well. I also have great faith and great hope in God because without that, I would not have been able to live these 32 years with MS :)

It is always best to discuss Tysabri with your neurologist, but it is my hope that you decide Tysabri will be your MS therapy of choice... plus, it is superior in its efficacy by 67%!

From your recent blog post, it appears to me that you are trying to convince yourself that Tysabri is for you. A very learned neurologist once said, "Time is Brain", and if you think about it, MS is eating away at our brains, producing more and more lesions.

I am thankful to God that Tysabri has stopped my relapses, and given me a better Quality of Life, with an ongoing hope for better days ahead.

I testified (via videotape) before the FDA AC in March 2006 in an effort (with other MS patients) to bring Tysabri back on the market for those of us that wanted/needed it. If you ever need to get in touch with me, my e-mail address is: LGLBGL2003@aol.com and you can also view my Tysabri Diary which is also my blog http://lauren-livingwithms-aolcomlglbgl2003.blogspot.com/.

All my very best dearheart... Faith, Hope, & Love and greatest of these gifts is Love.

Lauren :)

ms'er faith said...

I've had MS for probably 18 years although I'm only 35. The interferons were ineffective for me and I developed an allergic reaction to Copaxone. I have relapsing MS, so from what I read, I'm the ideal candidate for this as a mono-therapy. My fear is in having a reaction; my hope is that this could really work. I'm glad you and others testified before Congress--without it, this important drug would not have returned. Take care!

Lauren said...

Ah yes, the interferons and Copaxone. I failed both Avonex and then Copaxone...,then came Tysabri to my rescue.

You have the perfect attitude, one of hope. You also have the perfect name, one of faith. With a combination like that, how can you go wrong with Tysabri?!?

You are still young, so you have youth on your side, and I wouldn't be surprised if you make improvements on Tysabri, just don't expect too much all at once...It took you 35 years to get where you are today, so it might take a few infusions of Tysabri before you start to see improvements in your condition (although I am not a doctor and I don't know your entire medical history, only your neurologist and you do).

Sounds to me like you are the perfect candidate for Tysabri too, please keep me posted on your decision and progress.

Take care, and all my best.

Lauren :)