I met with my neuro today and we talked about Cytoxan and Rituxin as an option for me since I am not responding to IVIG, PLEX, etc.

Rituxin has fewer side-effects as I am told. But my neuro says insurance companies do not like to approve it because it is "experimental." Your company may approve it.

So we are going with Cytoxan for me.

Kerry

Rituxin has been used more often in the last few years for MG (mostly MuSK patients), but as Kerry said it's considered experimental and your insurance may not cover it. Also, while the side effects are generally fewer, there are some serious ones that are associated with it (serious as in, fatal).

How long have you been on the CellCept and Imuran? My recollection is that you haven't been on them for very long - maybe a few months? If so, it's way too early to know if they will work or not. It can take 18 months to 2 years to know if they will work. (a side comment - being on both Imuran and CellCept at the same time is VERY unusual....) If it has only been a few months on the Imuran and / or CellCept, my guess is that your insurance is less likely to approve the Rituxin.

What about increasing the prednisone? I hate to ask that, given the .... intense.... feelings of some on here about prednisone (both for and against it), and I'm not looking to start another debate on that, but I would definitely look into increasing the prednisone if that's an option for you before trying Rituxin. Personally (and I realize it's a personal choice), I'd rather risk diabetes or osteoporosis from the prednisone over a fatal brain virus from the Rituxin.

My understanding is that Rituxin has been used more often to treat rheumatoid arthritis. It may be worth it to see a rheumatologist to discuss the pros and cons of Rituxin (I know at least one person whose neurologist works with a rheumatologist in prescribing Rituxin for MG). You might also want to ask if being on so many immunosuppressants (Imuran, CellCept, Prednisone, and Rituxin) will increase your susceptibility to the more serious side effects of Rituxin.

Thank you both for your comments.

Kerry: I will definitely have my doctor make sure that the insurance will cover the cost before I agree to the treatment. So many of these treatments have outrageous costs and like most, there is no way that we can afford to pay for them ourselves.

crimsonjenn: You are correct. I have been on cellcept (2000 mg per day) since the middle of March and the imuran (40 mg per day) since June. I am also taking 40 mg of prednisone per day and 60 mg of mestinon 3 times per day. The reason he put me on imuran along with the cellcept is because my mg is out of control and he is very concerned about what will happen if he doesn't get it under control. The ivig and plex treatments have not worked. He doesn't want to increase the prednisone unless absolutely necessary because of the excessive weight gain. The added weight puts added pressure on my diaphragm causing even more stress trying to breathe.

I will try to find out more information about rituxin on the internet. The side effects you mention are very concerning to me.

Barbara

Barbara -

Does the Mestinon help you? Because if so, I recommend talking to your neuro about increasing your Mestinon dose before trying Rituxin. If the Mestinon side effects are too much, you can try taking Hyoscyamine or Glycoppyrollate to block the side effects. 60mg 3x a day is a fairly low dose of Mestinon. I take 120mg 3-4 times a day, plus a 180mg Timespan at night.

As for the imuran, you should probably talk to your doctor to see if that's the right dose for you. My understanding is that the dose is weight-dependent and is 2 to 3 mg / kg of body weight. There are 2.2 pounds in a kilogram, so, an easy scratch calculation of your minimum dose is your weight in pounds (I think I did that right). It could be that he's got you on a lower dose since you are on the CellCept, too.

Also, I'm sorry if I scared you with the Rituxin side effects - that was not my intention. The side effects are serious, but rare. But I do think it is something to consider, especially since you haven't been on the other treatments long enough to know if they will or will not work and you are on a relatively low dose of Mestinon. (Rituxin is also called "Rituximab" - that may help with your Internet research.)

Feel free to send me a message if you want....

Jen

Barbara, you know Jenn is saying exactly what I said before to you in my messages in regards to mestinon, prednisone, and especially imuran with Cellcept, I didn't like the way things are going with you and your doctor, and I believe it should be worth repeating once again. Once again I agree that increasing your prednisone and/or mestinon should have been the course and not adding the imuran to the cellcept. It is what it is now, but I still feel that way, and it sounds like Jenn does at well. It is important to trust your doctor also, of course. I would take Jenn up on private messaging her too.. No matter what, we want a better Barbara. One that has her MG under control and not an MG(and MD for that matter), that controls Barbara.

I wish you the best on so many levels and my heart goes out to you. Please keep us posted about your condition.

Best wishes for peace,

TJ

Hi there, I have been "living" with MG since April 2010- hospitalized 4 times and have high dose of meds (going down from prednisone 100 mg everyother day since Feb 2011) Nothing works for me- and everytime my prednisone is lowered to around 15mg I get worse...Started Ritux in May this year (weekly treatments at first and now every 2 months until end November)
I am not in remission (yet) but I do have MORE good days and my good days are better...I also recover more quickly from a bad spell.I am very hopeful for the future (prednisone down to 40 every other day) still on Tacrolimus and Immuran. Please note to take anti shingles meds during Ritux treatment as this often occurs... Health Canada did not cover Ritux either, but my work coverage AND company itself ( I had to send income tax returns) pays for most of it. No side effects from Ritux at all ( I do get Tylenol and Benedryl during) Infusions are a lot shorter than Ivig and no headaches after.
All the best. I do find that coping and waiting for treaments to get better require a lot of patience. In the beginning "they" mentioned 8 months to 3 year until feeling better...I was adamant it was going to be 8 months; now I see I am half way at 16 months, but I still believe in a "normal" life in the future.