We had an appointment with my neurologist several months ago, discussing the need to be on a medication for my MS. We were having a disagreement about being placed on a drug called Tysabri. Tysabri is a drug that has a possibility of causing death if you should develope a problem called PML. This is a brain disease that can cause death. I have known about this drug since it first came out about 7 years ago. It has not changed. So, this was a BIG concern on my part.
It has been said your chance of developing this problem is very small, especially if you are JC Virus negative. This virus can be the trigger to having PML if you are positive. I was checked for this virus and was negative. I still didn't want to take that chance. I really was not offered too many other new drugs that did not have some side effects but I felt Tysabri was not for me. I had read and researched this drug and what I had read, this drug was given to those who were having big problems with their MS. This wasn't me! So, we asked for a second opinion.
The office referred us to a doctor at the Medical University of South Carolina (MUSC). MUSC is located in Mt. Pleasant, SC, which is about a 2 1/2 hour drive for us. It is just a little past Charleston. It really isn't a bad drive. We have done this drive for other appointments and Charleston was were I had surgery for my thyroid. The doctor I saw, Dr. Aljoeson Walker, was fantastic and confirmed our thoughts about being on Tysabri. He said I didn't need it as it was the most powerful of the MS drugs and he usually gave it to his patients that were having a lot of problems. He told us that he had a patient in a wheelchair, who was able to walk after taking this drug. (This did not happen immediately). Dr. Walker did suggest another drug called Rebif.
Rebif has been on the market for at least 8-9 years. It is taken three times a week. The shot is taken under the skin, with a small needle, compared to the large needle I had with Avonex. Dr. Walker said, to me also, that Avonex will be coming out in the fall with a little stronger version of the drug that is only taken every two weeks instead and very similar to Rebif.
For now I will start Rebif. I am just waiting for the drug to be sent to me, arrange for the nurse to show me how to take it, and start the routine.
We were so impressed by Dr. Walker and the professionalism of his demeanor and knowledge. He is at a teaching hospital so he needs to stay very current and have that quality of dealing with so many different people. We both said WOW after we left the appointment. He took a full hour with us discussing everything. It wasn't a quick in and out as some doctors handle their time. Dr. Walker was funny and put you very much at ease. What a change from what we had been dealing with my other doctor! We made the decision to change doctors on the ride back home.
The call to my original doctor was not an easy one and when I did it was not meet with a positive attitude. I am sure they were unprepared to hear I would be changing doctors as this second opinion was supposed to be just that - a second opinion. I just had to do what was best for me.
One more other thing I learned. When you have secondary progressive MS, there are no drugs for this. The doctors will label you with Relapsing Remitting so the insurance companies will pay for your drug.
