Ocrevus– Approval

Recently I have been made aware of a new drug called Ocrevus and has been approved for Primary Progressive MS which is the type I have. This is the 1st medication that has been approved by the FDA for my type. To be honest I never thought I would see anything approved during my lifetime and this was a surprise to me. So last week my wife and one of our sons took me to see the neurologist. We were afraid that he was going to tell me that I am too far gone for to have much effect. I took my muscle with me to intimidate him. I'm not sure if that worked when he said he had no problem prescribing it for me.

My wife talked to the drug rep at a MS walk and they thought that my neurologist might balk at prescribing it so that is why took my son with me. We gave him credit for intimidating the neurologist. I agree that I am pretty far gone but there were 4 areas that I felt that if this drug can slow the disease progression it was worth it. I can still move my right hand a small amount and use it on the back incline of my power chair. This gives me the ability to lay back and rest which I do during the day. I can still use my neck to lift and turn my head and I don't want to lose that. The most significant was that this MS has affected my diaphragm which affects my speech and also my ability to cough up the phlegm which plagues me due to sinus issues. There is also my fear that I would have my eyesight affected and if this drug prevents or postpones it then  it would be worth it.

My wife got the impression from the drug rep that very few people who were nonambulatory had tried this medication and they were looking forward to seeing if it helped me.

The neurology nurse told us of how the process would work. They would do all the paperwork and then submit it to my insurance company. We expect the insurance company will accept it. At the same time the drug manufacturer Genentech as well as the marketing company both have programs in place to aid with the cost of the drug depending on the insurance coverage.

Friday evening my wife got a call from the nurse and she said everything was progressing well and she was very encouraging as to how it was going to proceed. So right now we are waiting to see what the next step all these different companies come up with. Not sure when I'll actually see the drug.

It would start with a 300 mg infusion intravenously 2 weeks later another 300 mg. 6 months after that would go up to a 600 mg and they continue with 600 mg every 6 months. Before we went to the neurologist I had looked at a list of some of the side effects. The list was a little troubling especially the one that said it may cause problems breathing for a while. Course we won't know until we actually try it but I decided full steam ahead! If the side effects are too bad they are too bad and we will deal with it then.

I will try to keep you posted of the progress when there is any via my blog.