I will be very interested in anyone's answer also. This is one of the options I have been presented with and will have to decide on in the next few days.

I had a Rituxan treatment years ago that worked well, but symptoms have increased in severity and now I am doing plasmapharesis and they want to add this in again.

Hope you do well.

I take pred and mestinon -4 to5 yrs,ivig allergy ,had phersis monthly which I liked but after last permacath got infected, I have no more access sites left. Have had rituxan 2rxs 14 days apart every 6 months since Dec 2014. Sometimes I really say yeah but dUe to son-in-law dying Sept I've really pushed myself to the max with 3 kids. Who knows but I always feel better 1-2 months for sure. Take care good luck with insurance -some people have trouble getting approved.

Thank you xmas25 for the info. Sorry to hear about your son-in-law, wishing you the best.

I was told I would only need the Rituxan once a year, but you have it twice a year?

I did have some trouble at first getting our insurance to approve it. I'm waiting on another approval so hopefully it goes through smoother this time.

Rituxan seems to be given in quite a few different ways depending on where you live

I had it December 2014 and it worked wonders, but only lasted about three months. The only side effect I had was itchy throat, which was handled with Benadryl.

My response was almost immediate and I felt at least 75% normal for those glorious three months.
I had it again the following year, but without dramatic effects, except I can now go every two weeks between plasmapheresis instead of every other day.

I get Ritux every 4 months as all other meds stop working. Although tired the first 2 weeks after infusion, I have no side effects. I do take 100 mg prednisone per IV with infusion. I really works, I would have no life without Ritux.

Thank you all for the feedback! Still waiting on getting the treatment approved so fingers crossed it'll be soon!

I have been given rituxan, alternating with IVIG every other month for over two years. The initial treatment was weekly for one month and then the every other month regime. It help with not only MG but with the CLL. Currently I am doing IVIG monthly and it helps for about 3 weeks. The only side effects from the rituxan stomach and weakness for a few days. I recommend the treatment.

I think they will stop the Plasmapharesis if they do the rituxan.

I used Rituxan after a very serious crisis that occurred in June of 2014. I underwent a series of 7 infusions spread out over 5 months. After about the 6th week, I really started noticing a significant improvement, it was night and day. For me Rituxan seems to be the only treatment that really works well. So far I have tried steroids, Imuran and IVIG. Imuran provided some relief, IVIG provided minimal relief and steroids really did not help much. Steroid doses much higher than about 30 or 40mg made my muscles much weaker, go figure. That one series of Rituxan provided for about 10 months of relief and I am starting to consider another round of Rituxan soon.

The side effects included some itchiness during infusion which needed extra Benadryl during the infusion and afterwards some hair loss and nausea for a while that was not too bad. Overall quite tolerable. It might be worth asking your doctor for some Zofran (nausea med) to have on hand just in case you need it.

I hope you can get approval soon

Joe

Thank you clark01 and joefnh for the feedback!

Hoping it'll get approved this week!

My 72 year old father was diagnosed with MG in Dec 2014. He got to the point where his swallowing muscles stopped working and his left eye lost most of its mobility. They started him on steroids and also IVIG. The IVIG worked like a miracle. He continued through 2015 only on steroids. But then he went into crisis again in Dec 2015. Unfortunately that time, the IVIG had no effect. During his nearly 6 week hospital stay, they started giving him weekly PLEX (plasmapheresis) to where now he has a port in his chest for that. After much deliberation on the hospital's part, along with indecision in the pharmacy about whether medicare would cover the cost, finally in Feb 2016 they started him on Rituxan, one IV dose per week for 4 weeks equaled the "first installation". The second installation will happen 6 months later in Sept 2016. It's safe to say it is definitely helping him, although now we're weaning him off the PLEX treatments, slowing down to every other week. If we ever stop the PLEX all together, that will be the final test as to whether the Rituxan is carrying him 100% or not. The neurologist is also trying to get him off the steroids, he's down to 40mg now (was up to 60mg daily). The only side effect that we can tell from the Rituxan is this. It purposefully gets into your bone marrow and suppresses your immune system in order to control the MG. My dad has had a couple of hospitalizations due to viral and/or bacterial infections his system couldn't fight off now that he's medically immuno-compromised. Also, your bone marrow generates hemoglobin, which is essential to carry oxygen to your muscles. So now he's borderline anemic ALL the time, which means low energy and lethargy. He's had 2 blood transfusions to get his hemoglobin level of 7 up to barely an 8.5 (when it should be between 11 and 13 for a normal man). But, he hasn't had any swallowing problems and his eye control is normal. So, as with anything, you take the trade offs. I would love to hear from anyone who is also dealing with rituxan (and/or PLEX) based anemia. He's on slow release iron capsules, monthly B12 shots and daily B12 vitamins, and still he's always lower than an 8. The hematologist shrugged his shoulders and basically sent him packing.

Sorry, I need to add one more thing about Rituxan. In the hospital my dad was in that administered the Rituxan, the people from the cancer ward gave it to him since it is considered a chemotherapy. They also made it mandatory that my dad take a specific kind of antibiotic, for life (or for as long as he's on rituxan) which is supposed to ward off a specific kind of pneumonia. I have forgotten the name of the antibiotic (but I can find out) but I do remember it was an anti-malarial. The worst part was that it was costing my dad $700 per month just for that antibiotic!!! At first the docs said there was no other option. Between his general doc, the hematologist doc, the neurologist doc, someone suggested changing to an alternate antibiotic which is much more affordable (like $100 per month). I would be interested to know if anyone out there taking rituxan for MG is also being forced to be on a daily regimen of antibiotics as a result.

Ive had rituxan 3 times 2 doses exactly 14 days apart every 6 months. Ive had a few utis but never told longterm antibiotics. Interesting about anemia. I just had 2 iron infusions but i always run low.ill be researching rituxan and anemia. Hope dad is doing okay. yes its chemo and drug companies dont want to payout$$$$

Never heard of antibiotic with Rituxan. Not mentioned in the literature, either, that I'm aware of. I was more prone to sinus and chest infections after rituxan.
I was chronically anemic for nearly a year, but after several iron tablets I couldn't tolerate, got on Chromagen (multigen) and hemoglobin and hematocrit are back in normal ranges.