Rituximab for MS anyone?

[Jifr]

Hi all.

I had a 3 month post flare follow-up appointment with MS specialist in Cincinnati today.  Based on current symptoms and my history of progression with my spinal lesions, he thinks I might be a zero positive for NMO (Devices disease).  The revised treatment plan for consideration  is to consider Rituximab for off label use.

I'm wondering if anyone else is following this treatment plan and can offer any information.  

Or, maybe someone knows where I can find information on its use for MS patients?

Thoughts, ideas, recommendations, suggestions, pennies and well wishes all appreciated...

[Doopies]

Thank you very much! It is hard to find direct answers when a drug is used off label.

Take care :)

[karryon55]

The Rituxan comes in 500mg packaged ampules only which have to be made up in a bag of saline fluid before administering. The dosage is typically 2 x 500mg ampules (or) 1000mg in a single dose for an infusion / treatment. This is the repeated again 14 days later exactly the same.

My prescription displays 2 x 500mg ampules = 1000mg dose as well as one repeat. I hope that makes sense :-)

Karry.

[Doopies]

I am confused on the Rituxan dose for MS. Is it 1000mg per infusion or 500mg in two doses?

Thanks!

[PeninaD]

DD doctor was so pleased with yesterday's exam and leukocyte panels that she may not have her take her next Rituximabs at 6 month, but wait to see signs on the blood work (CD19), which might be as long as a year from the first two doses.  DD also improved walking speed, balance, coordination and strength even since mid January.

[karryon55]

I had Anaphylaxis the first time I had it & am given my infusions over 8 hours always now. I had not been given any premeds though (they forgot) so this was not a good start for me. I have always had some breathing problems but I am also an asthmatic.

I took Zyrtec for my last infusion a fortnight ago & for the first time ever I had no breathing difficulties. I still got all the other side effects though. I have to wonder if the Phenergan I have always taken wasn't doing the job for me & I'm hoping if this continues they can speed up the IV after 6 years of having it over 8 hours.

Did they give you the IVSM prior to the Rituximab? There is a protocol they have to follow with the running time of Rituximab so they should find a rate that your body is comfortable with in the long run. If I was you I would just have the Rituximab run slowly if it is stopping the heaviness in your chest. It's only given every 6 months anyway & I'm sure your wiping your infusion day off anyway. Most people improve with each infusion as well.

Also if the nurse left the IV running full throttle & you were not doing so well this can be remedied by kindly asking them to slow it down. Take a second dose of the Benadryl if that helps I always did. I have learnt to have a break of about 30 mins from my IV because amazingly things settle & don't usually start up again. There is a section on IRR or infusion related reactions with Rituximab during some trials & it recommends you take "time out" like this because it is very effective in many cases. It's worth a try if you are struggling.

Good luck with your second dose. I'm off to hospital this morning for my next dose. :-)

Karry.

[immisceo]

Thanks for letting us know how it went. Be sure and keep your team in the loop if that doesn't go away. (Had to laugh at the full throttle comment. I've had a particular nurse take that approach to an IVSM infusion!)