Well, I had infusion #20 on Monday. I am now on the every 8 weeks schedule to minimize UTI's. This infusion was great: no flu like side effects. Sometimes it is really crummy for 2 days afterward and sometimes it is a breeze. Unfortunately, I think I got another UTI that started today. Ugh. So now I have to head back to the urologist.
Last week I finally saw my new neurologist who used to be at Johns Hopkins--basically my MS clinic "stole him away!" I like him MUCH better than the last one who was a dud. We talked about several things. 1. I shouldn't really take a prophylactic antibiotic for a week each time I get an infusion because it may build up resistance to the bacteria and then the only thing that would work would be IV antibiotics. 2. He also questioned whether I should stay on Tysabri--he said it is a little bit of an overkill since I have such mild MS (just the hardly noticeable optic neuritis, a little dizziness and cognitive stuff at that first event). I haven't had a relapse since I was diagnosed 2 1/2 years ago. Now he knows I went on Tysabri because I couldn't tolerate interferons or copaxone and he understands. He also said that we can't know if the Tysabri is what has prevented me from having any more relapses. I told him I was worried about my initial MRI with the black holes. He reminded me though that MRI doesn't necessarily correlate with symptoms. But given the UTI's and the PML risk with such a mild case of MS he suggested switching to something else. It's sad because I love my Tysabri!
He tried to steer me toward Avonex. I had tried Rebif. He thought maybe once a week might be tolerable. Of course I can't stomach that idea!!
He also said I could take a steroid pill called decadron on the day of the Avonex shot and that pretty much wipes all the side effects out. But again, the thought of taking regular steroids, even if one day a week, does not appeal to me.
We talked about the pills about to come out--cladribine and fingolimod. Out of the two he would lean toward fingolimod. He is very worried about the cancer risk with cladribine, and not just skin cancers, therefore he wouldn't advocate using that. Of course he said both drugs are serious immune suppressors. It's the same old dilemma: the better the benefit the higher the risk of opportunistic infections.
Anyhow, he wasn't pushing aggressively, just noting different options. We decided that I will get two more Tysabri infusions -- in May and in July. We will then meet in July to decide what to do. He will look at MRI results then. He is hoping that fingolimod may be on the market by then and I would switch to that.
Oh, in the meantime I found out I am iron deficient! I have been taking iron supplements for 3 weeks now and I feel like a new person. My hair stopped falling out, my lips are no longer chapped (weird symptom, huh?) AND the best part is I have stopped taking long naps. I have super energy now--I don't feel sleepy or fatigued like I used to. Sometimes at the end of the day I would just collapse with exhaustion. But now I have much more stamina. My brain feels a lot clearer and my memory is better. I am very happy about all of this! I thought maybe the fatigue was the MS or a Tysabri side effect. Really, it's likely I was very anemic.
Anyhow, I don't mean to go on and on and on and on.....
