Three month update!

A board to discuss the soon-to-be released drug Campath as a treatment for Multiple Sclerosis

Three month update!

Postby sugarmomma » Thu Jun 12, 2008 6:27 am

Well as it was our three month check up yesterday, so I decided to post a blog about our progress. Kristin and I haven’t had much of a chance to really talk lately, so most of it will be from my experience.

My body is slowly healing. As far as how I actually feel in general. I feel better.
I used to only have 1-3 good days a week. The rest of the time I was sick, exhausted, and miserable. Since the infusion, I now have 4-5 good days a week. My energy level is great. By the weekend I am usually tired but I can accomplish WAY more than I used to be able to do.

As far as my symptoms, they are okay. It seems that since the infusion I have more numbness that before and also more muscle aches and leg cramps. However my eyesight seems a little better and so does my vertigo and nausea. I think the worsening of my symptoms is due to the trauma my body experienced from the Campath. Hopefully, now that my body is starting to heal (as predicted by the third month), I will see nothing but improvement. All our tests are coming back great! Our immune system is slowly coming back and our lymphocytes seem good. One the down side, Kristin and I both have gained weight which we are having a hard time losing. I gained a solid 7 lbs. I have managed to lose 3 of them, but this last 4 lbs is not coming off and it’s hard not to gain. I think Kristin gained 10-15 lbs.

Kristin has started to notice a definite improvement in her walking. We had a bunch of physical exams yesterday to monitor our progress and she did better than she had done previously. Also she is riding a bike again, which she wasn’t able to do before.

Therefore I would have to conclude that the Infusion seems to be “working” and having positive effects.

Kristin and I are both anxious to see how we feel now that we hit month three. Unfortunately, we also live in Florida and summer has hit hard. With temperatures in the mid 90’s everyday and no relief from the heat, it is impossible to manage not getting over heated! In fact, I over-heated myself severely last Friday and had to spend the whole weekend recovering.

The crazy thing is Kristin had tried to get into another study previous to this. She was denied and instead managed to get into the Campath study. It turns out two people in the other study died last week. That really helps hit home about the seriousness of this whole thing. Hopefully Kristin and I picked the right one. The Campath study seems to have the best results so far. I feel really sad for the two people who lost their lives and my heart goes out to their families. To me these people are soldiers in their own right. MS soldiers. Because as we all know MS is a battle.

Hopefully the next update will be all positive!

P.S I think the study is still open and if anyone in the area wants info on how to apply for the screening process , feel free to contact me!

Be well.
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Postby gwa » Thu Jun 12, 2008 6:31 am

Am glad that you and Kirstin are doing well on the treatment. What was the trial that killed two people?

gwa
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Postby sugarmomma » Thu Jun 12, 2008 7:01 am

I believe the drug is Fingolimod. I don't think the deaths have been publicly released yet , they just happened last week. However my doctor is also participating in that study, so that is how he knew. Both patients who died had herpes ,I believe. I think they believe it is linked to that. Apparently both patients started to feel ill and were dead within 48 hours. Don't quote me on any of the details though!
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Postby sugarmomma » Thu Jun 12, 2008 8:12 am

This is the only thing I could find thus far about the Fingolimod deaths...

http://fty720.blogspot.com/
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Postby raven » Sun Jun 15, 2008 2:04 pm

I'm glad things are working for you. It's a long slow progression uphill against the damage previously wrought. At least you are moving in the right direction.

Campath gave me back my life. I sincerely hope it does the same for you.

Robin
Do not go gentle into that good night. Rage, rage against the dying of the light.
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Re: Fingolimod fatalities

Postby NHE » Sun Jun 15, 2008 8:17 pm

sugarmomma wrote:This is the only thing I could find thus far about the Fingolimod deaths...

http://fty720.blogspot.com/


Rainer posted an article from Reuters on it a little while back.

http://www.thisisms.com/ftopict-5681.html

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I went ahead with the trial!

Postby sweetC » Tue Jun 24, 2008 9:03 pm

Hey Sugarmomma,

I met you and Kristen during your Campath infusion. Thanks for all your info in person and on this site :D ...I went ahead and signed up for the trial and just finished my infusion on 6/20/08.

I'll post about my experience in another thread, but just wanted to give you a heads up!

-Caroline
<Frustration is trying to find your glasses without your glasses.

RRMS since Jan. 2006>
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