Ocrevous scheduled Yay!!!

[Lazarus]

Yes Agate. That is the schedule and I think it is what I wrote in my response above.

[Lazarus]

Linda, I don't know about Rituxan but for Ocrevus isn't it 2 infusions 2 weeks apart at first, then 1 infusion every 6 months after that? I got this from the Ocrevus Webpage:

Yes Agate, that is the standard dosing schedule that nearly everyone follows.

[Lazarus]

Have the upped the dose of the one infusion?

My Rituxan dosing has switched to one infusion every six months. It used to be a set of two infusions every six months.

Intriguing. Do you know the dose you get? Can you explain why this change was made? Interesting.

[Ikoiko]

I see you are in MA. I go to Beth Israel in Boston. I get 1000mg in one dose instead of splitting it into two 500mg doses. My neuro said that there is evidence that it works better this way.

[Lazarus]

I see you are in MA. I go to Beth Israel in Boston. I get 1000mg in one dose instead of splitting it into two 500mg doses. My neuro said that there is evidence that it works better this way.

This is really interesting to me. I have been on rituxan for about 4 years. Rituxan and Ocrevus are the same and I have been wondering about asking several dosing questions. Can you tell me who your Boston doc is? I am in western MA. Friends of mine go to UMass Worcester.

Thanks for any info. You have

Did you ask what your doc meant by “works better”. I have been wondering if people ever get more than the amount received in the standard dosage protocol. Higher dosing or more frequent dosing...?? That is my focus right now.

[Ikoiko]

This is really interesting to me. I have been on rituxan for about 4 years. Rituxan and Ocrevus are the same and I have been wondering about asking several dosing questions. Can you tell me who your Boston doc is? I am in western MA. Friends of mine go to UMass Worcester.

Thanks for any info. You have

Did you ask what your doc meant by “works better”. I have been wondering if people ever get more than the amount received in the standard dosage protocol. Higher dosing or more frequent dosing...?? That is my focus right now.

I see Jacob Sloane, MD, PhD at Beth Israel Deaconess Medical Center in Boston. He said that Rituxan gets into the brain and spinal cord better at the higher dose. I just started the 1000 mg dose two times a year last October. Before that I was taking 500 mg two weeks apart every six months.

[Lazarus]

I see Jacob Sloane, MD, PhD at Beth Israel Deaconess Medical Center in Boston. He said that Rituxan gets into the brain and spinal cord better at the higher dose. I just started the 1000 mg dose two times a year last October. Before that I was taking 500 mg two weeks apart every six months.

Thank you...thank you..thank you. I appreciate the answer.
I will take it up with my neuro next week. Your process confirms my instincts.

[ssusan]

I had the full dose today. Went fine. Tired but okay. Hoping for positive results. Apparently I am the first at Baystate to get the full dose. Last summer when I was there there we a few other people getting it.
I would imagine they will be in for full dose.
Fingers crossed.

[Virginia]

ssuan, hoping for really great things from this for you.

[agate]

This is so encouraging, ssusan!

[Sunshine]

Crossing fingers for you!

[Lazarus]

I had the full dose today. Went fine. Tired but okay. Hoping for positive results. Apparently I am the first at Baystate to get the full dose. Last summer when I was there there we a few other people getting it.
I would imagine they will be in for full dose.
Fingers crossed.

Great! Wishing you lots of good strength.

[Pegakafarmgirl]

ssusan glad this went well for you,, onward and upward,, we go !!

Well its finally scheduled {sp} Wednesday at Des Moines,, he really ticked me off by saying our Unity Point hospital, was inadequit to do this,, he didn't trust them,, I may get it done there, but I am changing neuro's,,

[agate]

Sounds as if you'll go to Des Moines for the infusion on Wednesday but change neuros--? Maybe you can get a neuro who knows and cares more about getting you to an infusion center (in a timely way) that isn't such a major trip.

Travel is tiring.

Having to get up and ready by a certain time to meet an appointment time is tiring.

If I had to have in infusion lasting hours, I'd want to be as well rested as possible just because something like that can take longer than expected.

[Lazarus]

Sounds as if you'll go to Des Moines for the infusion on Wednesday but change neuros--? Maybe you can get a neuro who knows and cares more about getting you to an infusion center (in a timely way) that isn't such a major trip.

Travel is tiring.

Having to get up and ready by a certain time to meet an appointment time is tiring.

If I had to have in infusion lasting hours, I'd want to be as well rested as possible just because something like that can take longer than expected.

I was thinking...maybe her neuro wants one facility rather than the other because of the quality difference between the 2. One of them might even be more equipped to handle a crisis with the infusion. It could be....