David's story
Posted: Wed Oct 18, 2006 8:02 am
Dear all,
When I was first diagnosed in May 2004, I came across articles on Campath on the UK MS Society website. There was a link to a patient with very active RRMS (David's story) who set out his experience. His diary ended pretty much after his second infusion. Two years on, he has provided an update - set out below. He seems to be doing well.
Of course it is only one person's experience (as is the case of Raven and Teri), but it might be something to think about for those interested in the Phase III trial which should begin in early 2007.
Ian
Two years later - September 2006
As you can see, I have not updated this site for more than two years. The reason for that was simple. I believed the site had served its purpose. The CAMMS223 trial was full, and no more patients needed help deciding whether to take Campath-1H or not. They simply did not have the option. I understand that some centres were still giving the drug on a compassionate basis, but the scare over ITP (Idiopathic Thrombocytopenic Purpura) and the unfortunate death of one trial participant from ITP probably stopped that as well.
There was another reason - I simply wanted to get on with my life. As anyone with MS knows, it's easy to become defined by your illness, and regularly updating this site would have served as a constant reminder of that illness. I also did not have much to write about. My MS has been very stable, but more of that in a moment.
Why then have I decided to update the site? I read that Genzyme have just published the interim results from the CAMMS223 trial, and are now seeking FDA approval to start the Phase III trial in early 2007. That means that potential Campath users will be looking for information about the drug, and an out of date site is a worthless site.
After the risk of ITP was discovered, I was asked to have monthly blood tests to check my platelet count. This is a small inconvenience and no problems have been discovered. I have also been regularly tested for Grave's disease and found to be clear. I understand that the trial organisers have found that the overall risk of developing the condition is not as high as initially thought.
MS
My condition has been very stable. I feel stronger and fitter than I have for many years. I regularly walk long distances, and have completed two 50 mile sponsored walks in aid of the UK MS Society. I also still teach and train in aikido. That is not to say that I have escaped my MS entirely. I still suffer if I exercise too much, and my symptoms return if I become hot, stressed, tired or very hungry. I have suffered minor periods of extra activity during the last two years, but have not developed any new symptoms. I am unsure whether the extra activity constitutes a relapse, or is just the result of insufficient rest. I doubt I will escape the MS completely, but I believe the drug has given me more disease-free time and hopefully will continue to do so.
No date has been set for any further doses of Campath. At my last check-up in April, it was suggested that any further doses would be held in reserve should my condition worsen. As the trial organisers are still learning the most effective treatment schedule, the timing of any third dose may change.
Conclusion
So far, so good. I would still recommend anyone with aggressive RRMS to consider the drug, as I believe it has helped me. In spite of minor relapses or blips, I still feel as if I've been given a second chance. I am very happy with the effects that Campath has had on my MS.
When I was first diagnosed in May 2004, I came across articles on Campath on the UK MS Society website. There was a link to a patient with very active RRMS (David's story) who set out his experience. His diary ended pretty much after his second infusion. Two years on, he has provided an update - set out below. He seems to be doing well.
Of course it is only one person's experience (as is the case of Raven and Teri), but it might be something to think about for those interested in the Phase III trial which should begin in early 2007.
Ian
Two years later - September 2006
As you can see, I have not updated this site for more than two years. The reason for that was simple. I believed the site had served its purpose. The CAMMS223 trial was full, and no more patients needed help deciding whether to take Campath-1H or not. They simply did not have the option. I understand that some centres were still giving the drug on a compassionate basis, but the scare over ITP (Idiopathic Thrombocytopenic Purpura) and the unfortunate death of one trial participant from ITP probably stopped that as well.
There was another reason - I simply wanted to get on with my life. As anyone with MS knows, it's easy to become defined by your illness, and regularly updating this site would have served as a constant reminder of that illness. I also did not have much to write about. My MS has been very stable, but more of that in a moment.
Why then have I decided to update the site? I read that Genzyme have just published the interim results from the CAMMS223 trial, and are now seeking FDA approval to start the Phase III trial in early 2007. That means that potential Campath users will be looking for information about the drug, and an out of date site is a worthless site.
After the risk of ITP was discovered, I was asked to have monthly blood tests to check my platelet count. This is a small inconvenience and no problems have been discovered. I have also been regularly tested for Grave's disease and found to be clear. I understand that the trial organisers have found that the overall risk of developing the condition is not as high as initially thought.
MS
My condition has been very stable. I feel stronger and fitter than I have for many years. I regularly walk long distances, and have completed two 50 mile sponsored walks in aid of the UK MS Society. I also still teach and train in aikido. That is not to say that I have escaped my MS entirely. I still suffer if I exercise too much, and my symptoms return if I become hot, stressed, tired or very hungry. I have suffered minor periods of extra activity during the last two years, but have not developed any new symptoms. I am unsure whether the extra activity constitutes a relapse, or is just the result of insufficient rest. I doubt I will escape the MS completely, but I believe the drug has given me more disease-free time and hopefully will continue to do so.
No date has been set for any further doses of Campath. At my last check-up in April, it was suggested that any further doses would be held in reserve should my condition worsen. As the trial organisers are still learning the most effective treatment schedule, the timing of any third dose may change.
Conclusion
So far, so good. I would still recommend anyone with aggressive RRMS to consider the drug, as I believe it has helped me. In spite of minor relapses or blips, I still feel as if I've been given a second chance. I am very happy with the effects that Campath has had on my MS.
