Hi I'm new here and I was diagnosed with MS on 31st October 2001, my MS is R/R and I started of on Methalprednisalone steroids for my relapses, then in 2002 went onto Beta Interferon(Rebif), but it didn't work for me so in 2004 I had was asked to be a guinea pig and try out a drug called Campath 1h, which is a drug given in yearly doses,
I had to consent to it so I was given a form to sign and the effects of the Campath were stated on the form, there was a 85% chance of having flu like symptoms with fever and high temperature while I was given the drug, then to follow there was a 30% chance of having graves disease(thyroid problems) and a 1% chance of having cancer of the lymph nodes, so it took me a few weeks to decide and agree to have this drug,
I spoke to a member of the Campath team about the cancer of the lymph nodes and she said, "1 in 3 people get cancer anyway so even if you don't have the Campath there's still a 1 in 3 chance you'll get cancer and it made sense so I agreed to have the Campath now I'm glad I did.
The first year I spent 5 days in hospital and I was given a Canula for a drip. I had Methalprednisalone steroids followed by saline solution to wash the steroids through, then Campath, then more saline solution to wash the Campath through, I had a reaction to the Methalprednisalone on the first day and didn't have any steroids at all for the other 4 days, just the Campath on it's own. I had to drink 4 litres of water in 3 hours while the Campath was going through every day.
I had the flu like symptoms and the fever with high temperature that I was warned about on the consent form, and on the 4th day I felt as fit as a fiddle.
In 2005 a year later I went back to the hospital again, this time for 3 days and went through the same process all over again, this time I had Prednisalone Steroids in tablet form to fight of the flu like symptoms and I was fine but still had to drink 4 litres of water in 3 hours, and after having the first dose of Campath I felt like a new woman this feeling continued and I even started running and going to the gym, then I was told I was doing so well that I didn't need to come back for the 3rd dose the following year.
Then in 2010 I had an MRI scan and was told I had another lesion in my brain that was active and I needed more Campath, so in 2011 I went back to the hospital and had my 3rd dose of Campath, which was basically the same routine but as I was given it on a different ward I didn't have to drink 4 litres of water in 3 hours, I got away with it but since then my muscles in my legs have got weaker and although I can still walk I need help when I'm out and I can't walk very far before having to sit down and have a rest.
I now have to go to the hospital for blood tests every 3 months and monthly blood tests at the doctors surgery every month in between going to the hospital, which I have had to do since 2005, when I was informed that they need to do blood tests to check that my platlets haven't dropped and my blood is clotting, easy bruising shows if the blood is clotting properly or not, this is because a man in America had Campath and his platelets dropped and his blood wasn't clotting and he died.
I have put on a lot of weight and asked if I have an underactive thyroid as I can't seem to loose it, blood test show that I don't so I still have to figure out why I can't loose the weight, back in 2010 I was 10 stone, now I am 16 stone and losing height too, as I was 5'6 in 2010 now I am 5'0.1mm.
I am also taking anti-depressants and my ms doctor at the hospital said that MS causes depression, so I take Mirtazapine (45mg) and Oxybutynin (5mg) for Continence which help to make it easier so I can get to the toilet without it being too late.
Sorry if this is boring reading, hope it's not too boring as I hope to make lots of friends here like me.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
I had to consent to it so I was given a form to sign and the effects of the Campath were stated on the form, there was a 85% chance of having flu like symptoms with fever and high temperature while I was given the drug, then to follow there was a 30% chance of having graves disease(thyroid problems) and a 1% chance of having cancer of the lymph nodes, so it took me a few weeks to decide and agree to have this drug,
I spoke to a member of the Campath team about the cancer of the lymph nodes and she said, "1 in 3 people get cancer anyway so even if you don't have the Campath there's still a 1 in 3 chance you'll get cancer and it made sense so I agreed to have the Campath now I'm glad I did.
The first year I spent 5 days in hospital and I was given a Canula for a drip. I had Methalprednisalone steroids followed by saline solution to wash the steroids through, then Campath, then more saline solution to wash the Campath through, I had a reaction to the Methalprednisalone on the first day and didn't have any steroids at all for the other 4 days, just the Campath on it's own. I had to drink 4 litres of water in 3 hours while the Campath was going through every day.
I had the flu like symptoms and the fever with high temperature that I was warned about on the consent form, and on the 4th day I felt as fit as a fiddle.
In 2005 a year later I went back to the hospital again, this time for 3 days and went through the same process all over again, this time I had Prednisalone Steroids in tablet form to fight of the flu like symptoms and I was fine but still had to drink 4 litres of water in 3 hours, and after having the first dose of Campath I felt like a new woman this feeling continued and I even started running and going to the gym, then I was told I was doing so well that I didn't need to come back for the 3rd dose the following year.
Then in 2010 I had an MRI scan and was told I had another lesion in my brain that was active and I needed more Campath, so in 2011 I went back to the hospital and had my 3rd dose of Campath, which was basically the same routine but as I was given it on a different ward I didn't have to drink 4 litres of water in 3 hours, I got away with it but since then my muscles in my legs have got weaker and although I can still walk I need help when I'm out and I can't walk very far before having to sit down and have a rest.
I now have to go to the hospital for blood tests every 3 months and monthly blood tests at the doctors surgery every month in between going to the hospital, which I have had to do since 2005, when I was informed that they need to do blood tests to check that my platlets haven't dropped and my blood is clotting, easy bruising shows if the blood is clotting properly or not, this is because a man in America had Campath and his platelets dropped and his blood wasn't clotting and he died.
I have put on a lot of weight and asked if I have an underactive thyroid as I can't seem to loose it, blood test show that I don't so I still have to figure out why I can't loose the weight, back in 2010 I was 10 stone, now I am 16 stone and losing height too, as I was 5'6 in 2010 now I am 5'0.1mm.
I am also taking anti-depressants and my ms doctor at the hospital said that MS causes depression, so I take Mirtazapine (45mg) and Oxybutynin (5mg) for Continence which help to make it easier so I can get to the toilet without it being too late.
Sorry if this is boring reading, hope it's not too boring as I hope to make lots of friends here like me.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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