Thursday, January 26, 2012

First Bleed of 2012

I haven't talked about this new clinical trial I have been on, mainly because I didn't want to jinx it but after 6 months and only a couple bleeds, I think it's about time.  Last summer, shortly after my trip to Africa, I was approached by the treatment center about a new long lasting rFIX(r means recombinant) product in the last phase of clinical trials.  I was slightly skeptical as most in hemophilia community probably would be after being on a product for years and years but Dr. Manco-Johnson assured me it would a good product for my lifestyle.  I would only have to infuse once a week!!!!!  I was truely amazed and excited.  Could it be real?  Could it really work?

I have now been on this study for about six months and I couldn't be happier!  I have had two break-through bleeds which is quite surprising considering some of the activities I have taken part in.  This past week was break-through #2.  Not sure exactly what happened but after a long weekend renovating the house, Monday morning started with an aching calf muscle and some swelling.  Can't complain to much though since I was up to 2-3 bleeds on month before this product.  Has anyone else out there had any experience with "long-acting" factor?  Would love to hear some stories and comments on the subject and lets all hope these bleed resolves in time for skiing this weekend!  Pictures and hopefully video to follow!


  1. Hello Chris, I am Vaibhav, a young man with hemophilia A. This is my first visit to your blog and I find it very interesting. Congratulations for conquering Mt Kilimanjaro. I have been on a clinical trial for a longer lasting rFVIII product for a couple of months now and the results till now have been very encouraging. Though the half-life of FVIII products is shorter than FIX products, I hope that further product development will make once a week infusion a viable option for FVIII deficient patients as well. :-)

  2. Hi Vaibhav! It's great to hear you are having success with a long acting product as well! As I understand it, FVIII is a much more complicated molecule to work with but things are looking promising.Have you been able to increase your activity level on the new product?
    Thanks for checking out my blog and hopefully you will come back and check on it from time to time. I will be posting more in the near future!

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