I just wanted to give a quick update and share some news I found out. I saw my "new" neurologist today -- this is only the second time I've seen him. He was previously at Johns Hopkins. I learned more from him today then any of the other 4 neurologists I have spoken to since I got MS.

First, my MRI showed no changes--no new lesions, no enhanced lesions. Yeah!! I just love Tysabri! I've had 22 Tysabri infusions. I'm on every other month since last Dec. I will get 2 more infusions in Sept. and Nov. and then meet in Dec. to reassess whether or not to stay on Tysabri or go on fingolimod. If I go on fingolimod I would stay off Tysabri for 3 months but have one dose of 1,000 mg. of steroids at the end of the second month to potentially stave off any kind of rebound effect until I can start fingolimod at the end of the third month. Interesting, huh?

Second, one of the patients on Tysabri at my clinic got PML a few months ago, although he had the infusion at an infusion clinic outside the city. Very sad. My neuro said that doctors are working on new treatments/drugs for PML aside from plasma exchange, the malaria drug, and steroids for IRIS. A new article came out last week about a PML patient who also received Remeron (antidepressant) but my neuro wasn't very convinced with its success. Anyhow, the neuros at my clinic got this patient into the hospital very quickly (even though he didn't have health insurance) and they gave him plasma exchange, steroids later on to protect from IRIS and used experimental drugs which they had flown in from ?? (I can't remember where). The drugs were flown in and the IRB (institutional review board) approved this all in 72 hours so the patient could take this drug immediately. The patient is now at home and has residual disability--weakness on one side of the body but doing fairly well. He started out with weakness and that is why he called the doctor. My neuro said the goal obviously is to catch PML as early as possible and that once you start treatment for PML, whatever disability you are manifesting is usually the worst you would be left with if you survive (75% survival rate); but the goal is to use the drugs, plasma exchange, and steroids to get you back as close to where you were before. The 3 things he said to look for with PML are 1) weakness on one side of the body 2) cognitive changes 3) vision loss. These get progressively worse over the course of 2-4 weeks.

Third, I learned interesting things about Fingolimod. They are not going to keep the name Gilenia. A new one has not been chosen. He spoke to Novartis and I think he said it will be approved Sept. 21 (if FDA says yes, but likely will). It probably won't become available to dispense in pharmacies until Oct. or Nov. Apparently there is an issue going on with the insurance companies and whether they will reimburse because it is new (and may be considered second line treatment). Or it may be reimbursed since it is "technically" the first pill. He spoke fairly positively about the drug. Of course he said we don't know what the long term implications are of imuno-suppression but the general side effect profile looks minimal for day to day feelings (no nausea, dizziness, fatigue...that kind of stuff). It slows your heart beat only on the first dose so he will keep his patients in the office for the first 6 hours to observe. Initially they were worried about lung capacity diminishing but he said that didn't really show up in any statistically meaningful way. There have been 6 cases of macular edema, 5 have resolved after going off the drug. He will have his patients checked by an opthamologist regularly. He will also recommend skin checks regularly since a few people got basal cell skin cancer.

Generally speaking, he won't recommend fingolimod as first line drug until after 2 years of seeing what will show up. But, he is not adverse to prescribing it and if he had to choose between Tysabri and fingolimod as a second-line, as much as he loves Tysabri's success he feels the safety record is slightly better with the unknown fingolimod v. the possible PML with Tysabri. But again, he seemed open to letting the patient make this choice.

What a day. I'm glad it's over.