Hello all you MS Warriors! Just a quick question, has anyone out there been on both Tysabri and Ocrevus? Which one worked better for you?
I'm hesitant to try Tysabri due to the risk of PML, but it seems to have fewer side effects and has been out for a while now. On the flip side, Ocrevus seems to have more side effects but less serious ones and hasn't really been out long enough to see long term effects.
And yes, I know that these DMT's affect everyone differently. I was just looking for some opinions. Thanks everyone!
My daughter’s doctors are at the Rocky Mountain MS Center in Denver. They have some great Webinar presentations on their website about choosing DMTs. I have participated in quite a few of their webinars and find them very informative. They recommend an aggressive course of action from Day one under the assumption that you should try to slow the progression of the disease as quickly as possible. I believe they have a chart showing their recommendations for Tysabri vs Ocrevus. She is on Ocrevus but only because she tested positive for the JC Virus which raises the risk of PML so she couldn’t take Tysabri. Your doctor could probably test you also. This is not a medical recommendation as I realize all doctors have their own approaches, but I know my daughter wishes there were more aggressive medicines available when she was first diagnosed 14 years ago. Good luck and keep asking questions!!
I have not been on both.
I believe you'll find that Ocrevus/ocrelizumab is a "humanized" version of a leukemia drug (rituximab) that was used off-script for MS. Thus, it does have something of a track record if you consider its history.
I have not had any side effects from Ocrevus. A friend who was on the trial of Ocrevus pre-FDA approval gets about every side effect in the book from it. She was previously on Tysabri but it proved ineffective in her case. You're right though, these DMTs impact everyone differently.
From cursory readings I've done, I've read that Tysabri is slightly more effective than Ocrevus. The key to PML risk is if you have the JC virus (JCV) present; have you been tested for that? The PML risk is real and serious, but OTOH, the odds are relatively low. Dr. Boster has a video "thought experiment" on that risk but you've probably already watched that.
I was not aware of Ocrevus' "relation" to rituximab. That is very interesting. I've heard lots of good things about it.
I thought to myself "I'm not special/lucky/etc. I'm always in the majority when it comes to the 1 in XXX scenarios, so what are the chances that I would actually get all those side effects?"
And then...MS HAPPENED. Haha. Not to make light of the situation, but it is indeed rare. So, now my thoughts are "well, I'm going to get every one of those side effects plus the possible cancer they say it can cause."
But, that also goes for Tysabri. I have done that thought experiment SEVERAL times and have always given the "thumbs up" but always overthink it afterwards.
Can't I skip the DMT's altogether? Lol. They all sound awful.
Hello "MS" friend:
I am currently on Ocrevus and I have not had any problems at all with the side effects. I just got diagnosed last year. I get infusions every 6 months for this and I take Amprya every 12 hours every day. I have not been on Tysabri but I will read up on it. I was nervous when I read the side effects but I had nothing to loose.
Your "MS" friend,
Did the infusions cause any of the itching/burning that my MS doctors have warned about, for you?
LAMchops2019 - I'm newly diagnosed, I had the first 2 1/2 infusions you get to start instead of the full infusions 6months thereafter and continuing.
I have had no side effects. The time of infusions I slept through them because of the benedril and couldn't sleep that night so I took the following day off of work because I didn't want to drive on wonky sleep. Nothing else at all for me. I have my 3 month appointment next week so lets see what my neuro says and wants to look at.