Good News Mixed With Some Sadness
I met with my neurologist this past Thursday because I have been slipping a little in the last few months. These past months I have not been very truthful when responding to the nurses who administer the Tysabri when they asked me five questions concerning my current condition. The first two being "Have you had any new symptoms?", and "Are any of your symptoms worsening?" along with three others. Knowing how closely the Tysabri infusions are monitored and knowing that if I answered "Yes" to any one of them, then the infusion would be immediately stopped, I chose to continue on with the medication. The Tysabri infusions have been so good for me that not only had the progression of the disease stopped, but I was actually showing improvement in several areas. I was fearful of stopping. I also knew that the risk of PML (a rare but fatal brain disease) increased the longer the infusions continued. Things were going so well that I did not want to be taken off the drug, even though longitudinal studies of those being on Tysabri for longer than two years have not been administered. I was to have infusion number 35 in the next weeks.
After our Thursday session it was decided that I needed another MRI to see what the progression of my MS was doing in my brain. We did the MRI yesterday and met with Dr. Blake immediately after in order to go over the results of the scan.
The great news was that when comparing my scan with one done almost two years ago, in addition to no sign of PML, there were no new lesions and the ones that showed up in the previous exam had not gotten any larger. I could not have asked for a better report. However, because I had to finally 'fess up and because I had been slipping a little, it was decided to discontinue the Tysabri. But on the good side (I hope) is that there is a very new drug, Gilenya (fingolimod) which was only approved by the FDA on September 22, which in the clinical trials, where double blind studies were administered, shows similar (or even better)effects on MS patients. I and two others from Dr. Blakes' office will become the first of his patients to try it out. That should occur sometime in mid-December. First, I have to jump through some more hoops in order to be accepted to take the very new drug.
I am sad to give up Tysabri, even though I know it might be the best move at this point in my journey. In the past I have always been able to thoroughly research various therapies which I have been on, but this one is so new that there is virtually no one to turn to in order to see what effect the medication might have. Plus, I have to be off Tysabri for two months in order to get any remnants of the drug out of my body. I call this a 'free fall' period. I will also miss the relationships I have formed with two of my Tysabri buddies, as well as the nurses at the hospital. In the past the nurses have always set up a special place for us and sometimes spouses. We have spent quite a bit of time together and have become rather close. I'm certain that we haven't seen the last of each other as Wanda and I have talked about going down to the hospital on our designated Tysabri day so we can visit.
I realize that this is a rather long post, but the last few days have been stressful for both of us and this is a way for me to get it off my chest. Thanks for listening.
posted by Gary Pruitt @ 1:17 PM
