MRI Results and New Treatment

MRI RESULTS

I don't think I ever posted results from my July MRI. They actually did a 3Tesla MRI this time which is much more powerful than a regular MRI. The images look like photographs of my brain, which is kind of crazy. I told my mom they looked like autopsy photos because they were so detailed....she didn't appreciate that much!! Haha.

Interestingly, it seems that my last MRI report may have been wrong. The radiologists compared my new scan with previous scans, including a 3Tesla scan from February, and the report was "no change" in either the lesions or the enhancement. My doctor says we will continue with regular MRIs to keep watching this. At this point we are approaching ten months of an enhancing tumefactive lesion, which is something you only read about in research papers, if at all.

NEW TREATMENT

Given that my lesion has failed to respond to every treatment we have tried....solumedrol, prednisone, plasma exchange (plasmapheresis), and Avonex, my neurologist has been more insistent than ever that we get me onto Tysabri. I have some pretty overwhelming cognitive symptoms that come and go, along with extreme fatigue, muscle weakness, numbness, nerve pain, nausea, head pressure, etc. My doc thinks there is a good chance that if we can get the lesion under control, I may also be able to get my symptoms under control. The hold up so far has been my insurance company. Tysabri is usually reserved for people who have had MS for a longer period of time and who have stopped responding to other MS treatments. Convincing them to approve such an expensive medication when I have been sick for less than a year has been a serious challenge. But I do have good news....it is finally approved!!! My first Tysabri infusion will be September 5th. I'm excited and hopeful, but also really nervous.

TYSABRI according to me.....

Tysabri is a pretty serious drug, in fact it is considered a black box drug because it has some risky side effects, including PML, a life-threatening, untreatable condition. You can't read anything about Tysabri without seeing this warning: "Since TYSABRI increases the risk of PML, a rare brain infection that usually causes death or severe disability, it's generally recommended for patients unable to tolerate or respond well to another therapy." Haha...that's pretty comforting when you keep seeing and hearing that over and over again! In some ways, even though I knew I needed this, I am not upset about the six months it took for my insurance to approve the medication. It has taken me that long to settle with the fact that we have tried everything else, and to accept that I really do need this treatment if I am going to get better...now we can only pray that it will work!

Tysabri is different than other MS treatments, because rather than delivering an interferon or other medication, it is actually delivering monoclonal antibodies. It does affect your immune system, though they say it is "immunomodulating" not "immunocompromising" like chemotherapy. One of the things it does is to modify the blood-brain barrier so that white blood cells and antibodies can no longer attack brain tissue. This is why we are thinking the Tysabri might help us get my lesions under control.

Because Tysabri is in the highest class of black box medications, the prescription has to go through the TOUCH prescribing program, which is a government regulated, and I had to be approved for the medication. It is nice because the Touch program makes sure that every facility giving the infusion is specially trained in giving Tysabri, and it collects regular updates from patients so that if there ever were to be a symptom or change that would indicate a problem, they would probably catch it sooner than later.

Tysabri is given once monthly, and I go to a doctors office to get the IV and infusion. They say it takes about an hour for the treatment to run, and then they always keep you for an hour to observe any side effects. I'm finishing off my valley fever treatment and then I'll be having my first infusion....I'll definitely write about it then!

I do have an update on the Valley Fever stuff. I had a chest CT which gave us another unexplainable puzzle piece (hooray!) It actually has nothing to do with Valley Fever. Or at least it doesn't look that way. Anyways. I'll write that update later because for now I need to sleep!

Mandy