Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

1,709 Members

7,414 Posts

0 Online

jeanniea 09/10/2012

I know there have been a few people here who in the past year have mentioned going on this for their MG.

I would be very interested in how this has worked for you and any side effects you may have had.

Thanks for sharing!

Jeannie

txkiki53 09/10/2012

Jeannie,

I agree good topic.. I am also interested.
Annette

mgadvocate 09/10/2012

I am also very interested in also hearing from anyone who currently or in the past, took Rituxan.

My doctor's and I have been talking for several months that Rituxan is the next drug of choice she wil put me on.

If she doesn't see improvement during my appointment next month I MAY be going on the drug.

Bruce

krbunn 09/10/2012

I had 1 gram in April 2012 after 5 days of PLEX. I had an additional gram two weeks later. Only side-effects were some mouth ulcers and tiredness. So far, it has kept me off PLEX for 4 1/2 months which is good. So far, I am not getting better, but I am not getting worse either. That is great for me. I will have blood work in Oct to see if my B-cell have returned, if them maybe more Rituxian.

Insurance has been a real problem with this. Still fighting about the 2nd infusion.
--Kerry

jeanniea 09/10/2012

Yes, my doc says the insurance is the big battle with this. I havent checke to see of it is less expensive than frequent plex treatments.

Im glad to hear it is working Karry.

Thanks!

Jeannie

DebbieF777 09/12/2012

Yes, Rituxan was thrown around for me, too, but we decided not to fight that battle with insurance yet. Since this discussion with my neuro, I have learned that it is one of the drugs of choice for DM (another of my collection) too. So I will ask in February, if things are not turning around more by then. Things are going better for me now.

BCCanada 09/13/2012

I started Ritux last year with treatment every other month- as no other medication worked for me after a while, and as soon as I taper prednisone the MG symptoms came back full force.

I do feel MUCH better since and my predisone is now at 3 mg (coming from 100 every other day) My neurologist's protocol is to repeat this after 6 months and now I am waiting for dates; every week for 4 weeks treatment.

Health Canada did not want to pay the bill (too experimental for MG) it's used mainly for Non-Hodg. lymphoma.

My health insurance covers part of Ritux but I needed an hematologist to prescripe and she put me in touch with Ritux company who helped pay for the drug, so my bill in the end was quite small.

I am happy with treatment- so if nothing else helps a lot or stops working (!) Ritux is worth a try for sure.

Willeke

BCCanada 09/13/2012

p.s. no side effects at all. just tired for a while. no nausea nor headaches. i just have to take 50 mg prednison on infusion day & in hospital i get tylenol and benedryl

Join the Conversation