So for the previous week or so I have been stressing over how my new neurologist wanted to take me off Tysabri and screw with my cocktail. Well after talking to my SoCal neuro and his nurses about my test results and doing lots of research I found I found out my odds of developing PML are just the same as I explained in my previous post.
So recap; considering I have only had 17 infusions so far and have no past history of immunosuppressant use like chemo (According to the Tysabri website steroids don’t count) my odds of developing PML now that I am JC positive are still less than 1/1000 which is the same as if you were JC negative). If you want to count steroids as an immunosuppressant on this chart than my odds are 1/1000. This confirmed everything everyone told me except this new MS clinic.
The place is nice looking and my neurologist is a kind individual but she truly underestimates my knowledge on Multiple Sclerosis and my ability to know when I am being BS’ed. I saw her yesterday and she knew I wanted to stay on it (because I called them and told them after they called me leaving a message saying I need to come in and choose a new therapy) but despite all her scare tactics I wouldn’t budge. She kept bringing things up and for every reason she gave me to get off now I gave her a solid answer as to why it’s better to stay on. Finally she told me “well it’s not really the JC virus that is dangerous, its the fact that you are now at a greater risk of developing something called P M L-” (all slow like I had never heard of it) I cut her off; “Progressive Multifocal Leukoencephalopathy? Yeah I know all about that, in fact, I am writing an article on it right now for MultipleSclerosis.net. It would be more dangerous for me to get off so early as I am pretty much a guarantee to rebound.” “well that doesn’t happen often” (BS) “and we are looking at a new medication that might safely help to switch people from Tysabri to”. “Campath?” “ no… Ala-something-mab; they currently use it to treat leukemia or something like that”. “Yeah that is Campath, Alemtuzamab is just the generic name and they are in the process of trying to get it FDA approved for treating MS under the name Lemtrada”. “No… I don’t think that’s it, it starts with an A.. Something mab…”. OK I give up, one day you will learn about this medication (I thought to myself).
At that point I told her I was not switching until that medication (Ehem, Campath/Lemtrada) is available because my risk factor as of now is no different (Campath is what my SoCal Neuro thinks would be good for me after Tysabri) so she said “let me go see what Dr. So&So thinks”. She left the office for about 10 to 15 minutes where I took the time to look around. No MS posters, no MS or neurology literature, just s travel magazine and an “MS Cheat Sheet” hanging on the wall… nice. My “MS specialist” needs an MS cheat sheet. Hide that in a drawer, don’t post it on the wall for all your MS patients to see! That makes you look way less trustworthy when it comes to your knowledge of MS! She came back in and simply told me that we will just keep going with the Tysabri (since it was clear that she couldn’t convince me to get off) and have me come back in for some blood work and see where things are at then. She told me to let them know if any weird symptoms start occurring and I told her “Trust me, I will, I know what the early signs of developing PML are so no worries” and then I left.
So I am good for Tysabri for at least 6 more months. During this time I will be looking for a new neurologist who knows more than me about MS as it SHOULD be… I was so worried about leaving my SoCal Neurologist for this very reason. Oh yeah, I totally forgot to have that abstract sent to that neurologist I saw the other week who had told me that he has “never seen a study showing that Acthar actually works”. CLICK HERE to read that abstract. For someone who is “all about patients continuing their MS education” he sure has some self educating to do! Note how it mentions that a medication like Solu-Medrol may increase your chances of developing PML whereas Acthar doesn’t compromise your immune system which mitigates your chances of developing PML. Not to mention they saw patient’s EDSS score improve. Anyways, I don’t want to come off as a smart ass to them I just want them to know that I know what I am talking about when it comes to MS, I am not just another patient who knows next to nothing and looks up to every neurologist like they are a step down from God… just because you read a few pages on MS in a neurology book and you work at an MS center does not make you a specialist. So please, don’t try to BS me, I am not dumb…
Of course that is just my opinion (I don’t trust my life in their hands) but I got the prescription and if I start noticing anything weird (highly unlikely according to the odds and my SoCal Neuro) I will notify them and request an MRI immediately and fly back to see my SoCal Neuro to get his expert advice as to what I should do. So yay, no more stress! If you know of any Neurologists in Colorado that can prescribe Tysabri let me know, thanks!