Tuesday, 19 May 2009
The day after the meeting!
Yesterday was the day I should have seen my consultant, but instead I ended up seeing the MS nurse. I was a little disappointed but as Martin said, as long as they could answer my questions then it didn't matter who I saw!
I actually came out of the hospital feeling more positive than I have done in a while.
I discussed the MRI results. Apparently the lesions that I had already haven't grown any bigger, so that's good right? But there are additional ones that have appeared on my brain - I was just pleased that it confirms I have a brain!!
The opinion is that it is these new lesions that have caused my latest relapse.
So where do we go from here?
We discussed the two treatments that my consultant had mentioned - Tysabri and Campath.
It turns out that I would be ineligible for Campath because I already have a Thyroid problem. This was one of the risks with Campath, that it could affect the Thyroid and because I already have it I am unable to take Campath.
So we are down to Tysabri.
We had a lengthy discussion about the drug and what it would involve if I decide to go on it.
Yes there is a risk of a brain infection called PML. It has caused death in the past but it is also treatable. The risk factor that I have been told is about 1 in 1000. But having said that, some of the deaths that did occur were in people whose immune system was already comprised or they were taking both Tysabri and an interferon.
More and more people are using Tysabri and it is generally thought of as a positive treatment for people with MS.
If I decide to go ahead with it, I would have the treatment in Plymouth and it would be an infusion every four weeks. That is another issue that I have talked to the nurse about, because of my troublesome veins. I don't really relish the thought of being black and blue every month.
It would be done on a unit where the nurses are very experienced and are dealing with this type of thing, daily. So is it worth a try?
We have asked the nurse to send us the information about Tysabri, just so that we can get it straight in our own minds, but I think Martin & I both feel that I have nothing to lose by trying this treatment. I would be fully monitored and I would see an MS nurse every four weeks. The more people that go on the treatment means that I could be getting my infusion with other MSers, which we be good support for us. I like the idea of someone else administering it and having other people about to talk to. That was a problem I had with Rebif and Avonex - I felt like I was battling this on my own, especially having to inject myself.
Tysabri can reduce relapses by up to 60%. That has got to be worth a try right?
So watch this space!