Campath feedback please
Posted: Mon Feb 23, 2009 8:55 am
Hello all,
I am new to the Campath forum but some of you may recognize me from the Tovaxin forum. I want to for some feedback from you folks, especially the those who have gone through the Campath treatment. Below the paragraph with my questions is a description of my situation if that helps with your input.
After the Tovaxin study was shut down, the Campath folks finally decided to let us Tovaxin folks into the CARE-MS II Campath study. Unfortunately for me, last Thursday at my baseline visit I was informed that I had been randomized to the Rebif arm. Needless to say, I'm pretty bummed out. I don't have confidence in another interferon and I'm afraid that I can't spare 2 years and an expected 2 major flares (based on my Betaseron experience) to wait for the crossover to Campath.
There is an MS clinic just south of Nashville, TN that prescribes Campath as an "off label" treatment for MS. They do the infusions and a couple of followup visits and then all of the monthly blood work is handled through your regular physician. The cost is about $6000 for the month 0 infusions and $4000 to $5000 for the month 12 infusions.
For the people who have gone through the Campath treatment, would you do it again? Do you suggest to other folks that it is a treatment that they really should consider? With the monetary costs out of the equation, is this an option that I should really consider?
My MS situation:
I have had MS for 5+ years now and my MS is primarily thoracic spinal cord involved. My symptoms are mostly problems with leg mobility and balance leaving my ability to walk certainly compromised. Depending on the day, my EDSS ranges from 4.0 to 5.0. Throw in a fair amount of tingling in my hands and feet as well as spasticity in my legs and you have how MS affects me.
I started out with Betaseron but things did not go well for me on that. I continued to have a fairly severe exacerbation every 9 months. After 18 months I switched to Copaxone and while I did feel better on that I still continued to have a fairly severe exacerbation every 9 months. After 18 months on Copaxone, I then entered the Tovaxin trial and did get the actual Tovaxin treatment for the first year and then went into the Tovaxin extension study. There, I received 4 of the 5 vaccinations before the study was shut down. During the total of 2 years in the Tovaxin study and extension I had only 1 relatively minor flare.
Thanks for your input,
Mike
I am new to the Campath forum but some of you may recognize me from the Tovaxin forum. I want to for some feedback from you folks, especially the those who have gone through the Campath treatment. Below the paragraph with my questions is a description of my situation if that helps with your input.
After the Tovaxin study was shut down, the Campath folks finally decided to let us Tovaxin folks into the CARE-MS II Campath study. Unfortunately for me, last Thursday at my baseline visit I was informed that I had been randomized to the Rebif arm. Needless to say, I'm pretty bummed out. I don't have confidence in another interferon and I'm afraid that I can't spare 2 years and an expected 2 major flares (based on my Betaseron experience) to wait for the crossover to Campath.
There is an MS clinic just south of Nashville, TN that prescribes Campath as an "off label" treatment for MS. They do the infusions and a couple of followup visits and then all of the monthly blood work is handled through your regular physician. The cost is about $6000 for the month 0 infusions and $4000 to $5000 for the month 12 infusions.
For the people who have gone through the Campath treatment, would you do it again? Do you suggest to other folks that it is a treatment that they really should consider? With the monetary costs out of the equation, is this an option that I should really consider?
My MS situation:
I have had MS for 5+ years now and my MS is primarily thoracic spinal cord involved. My symptoms are mostly problems with leg mobility and balance leaving my ability to walk certainly compromised. Depending on the day, my EDSS ranges from 4.0 to 5.0. Throw in a fair amount of tingling in my hands and feet as well as spasticity in my legs and you have how MS affects me.
I started out with Betaseron but things did not go well for me on that. I continued to have a fairly severe exacerbation every 9 months. After 18 months I switched to Copaxone and while I did feel better on that I still continued to have a fairly severe exacerbation every 9 months. After 18 months on Copaxone, I then entered the Tovaxin trial and did get the actual Tovaxin treatment for the first year and then went into the Tovaxin extension study. There, I received 4 of the 5 vaccinations before the study was shut down. During the total of 2 years in the Tovaxin study and extension I had only 1 relatively minor flare.
Thanks for your input,
Mike