Sorry this is so long!! Today I had a Q & A appointment with my neuro to try and understand why he is so enthusiastic about Ocrevus and why he is encouraging me to switch on to it. Basically he wants me off of Tysabri because my risk of PML has gotten to be too great. He even told me he wants me to switch because he doesn't want me to contract PML and die from it. Well I don't want to die of it either!! (He has lost patients in similar circumstances to PML.)
He will be switching all of his JVC+, long time Tysabri patients to Ocrevus. He said I could go on Lemtrada if I'd rather but after he described the issues with it, I like that option even less. His belief is that Ocrevus should have a similar safety profile to its predecessor Rituxan. When I asked him why wouldn't my PML risk carry over to Ocrevus since it is a biologic like Tysabri, he said its because of the difference in the affects on the immune system. Ocrevus operates on the B cells whereas Tysabri operates on the T cells. I asked him about the cancer risk and he said that the risk of cancer on Ocrevus is less than my risk of PML on Tysabri. And that the risk of cancer and other opportunistic infections is similar across all the biologics. So...I guess once you are at the point of the first tier drugs not working and you enter the realm of the biologics, these are the risks.
Since we are coming in to the summer months and I'm very heat sensitive, he agreed with me that I should wait to make a switch. He doesn't want to be in the position of figuring out if its the heat causing me an issue or the drug. I agree totally. So...it looks like I will have one more dose of Tysabri in early July. Then fill out the Ocrevus paperwork at my neuro followup appointment in August. He wants me to wait 12 weeks from the July Tysabri dose so I'm looking at a first dose of Ocrevus in Sept.
One other thing we talked about it is that there is now a recommendation for patients switching from Tysabri to Ocrevus to have steroids during the time period from the last dose of Tysabri to the first dose of Ocrevus. I said it made no sense to me to do that because I've had almost no exposure to steroids and they are also an immunomodulator. He said that he had to present it to me but that he agreed with me 100%. The end result of our discussion is that I will not be doing the steroids unless I have some kind of flareup during that time period.
I'm definitely not happy about any of this but am not willing to keep taking a high risk of PML. I try not to think about it but its always there. I don't like that Ocrevus has not been tested in my age bracket. I also don't like that there seems to be almost zero facts around switching JVC+ patients from Tysabri to Ocrevus.
I've posted before that all this makes me feel like a lab rat and I hate that. I'm hoping a little more will be known by the time I'm supposed to get the first dose. When I suggested that to my neuro, he was not optimistic about it. He feels it will take more time than that.