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196 Posts
Good luck with your rituxan treatment, I hope that it all goes well for you. I also had to wait a long time between my consultant wanting to try this, and the funding being sorted so have an idea of what you must have been going through.
Hopefully to offer you some optomism for the treatment it has been trully marvellous for me, in particlular with the CNS symptoms, which were absolutely limiting my life to a great extent.
Two things that I remember from when I started the treatment, it doesn't kick in straight away, I think I remember thinking that it had not helped until about six months after the first set of treatments. I don't know why technically, but I think of it as once the B cells have been wiped out a sort of slowing down of lupus activity. Then I think things got a whole lot better quite quickly.
As far as reactions or side effects, I believe the most common thing is to react whilst having the infusion, an allergic reaction, I have only once experienced this, a swelling of the throat, when they just decreased the rate of infusion, I know that other people have experienced more severe allergic reactions during infusion. As to side effects after the treatment, I think they are few really, I do find that after treatment I am pretty shattered for a couple of days. Sometimes I have steroids infused at the same time, and these often help me really quickly.
I hope that things really start to improve for you with this treatment, and that if it helps that you will be able to access more treatment as needed, I'm guessing you are in US so don't know about your system of healthcare.
Oh and if it gives you some hope I was retested for CNS difficulties I think eigteen months after starting rituxan, (now I recieve a treatment every six months) and the differnce in all areas they looked at has improved beyond what I could have hoped for, and has made the most immense difference to me, after being on every other treatment previously.
Good luck, and hope to hear how you are doing xx
Hopefully to offer you some optomism for the treatment it has been trully marvellous for me, in particlular with the CNS symptoms, which were absolutely limiting my life to a great extent.
Two things that I remember from when I started the treatment, it doesn't kick in straight away, I think I remember thinking that it had not helped until about six months after the first set of treatments. I don't know why technically, but I think of it as once the B cells have been wiped out a sort of slowing down of lupus activity. Then I think things got a whole lot better quite quickly.
As far as reactions or side effects, I believe the most common thing is to react whilst having the infusion, an allergic reaction, I have only once experienced this, a swelling of the throat, when they just decreased the rate of infusion, I know that other people have experienced more severe allergic reactions during infusion. As to side effects after the treatment, I think they are few really, I do find that after treatment I am pretty shattered for a couple of days. Sometimes I have steroids infused at the same time, and these often help me really quickly.
I hope that things really start to improve for you with this treatment, and that if it helps that you will be able to access more treatment as needed, I'm guessing you are in US so don't know about your system of healthcare.
Oh and if it gives you some hope I was retested for CNS difficulties I think eigteen months after starting rituxan, (now I recieve a treatment every six months) and the differnce in all areas they looked at has improved beyond what I could have hoped for, and has made the most immense difference to me, after being on every other treatment previously.
Good luck, and hope to hear how you are doing xx
