My husband is back at MMC for another series of plasmapheresis but they are trying Rituxan one before the series and one after the last on this Friday. Some of the clinical trials look good, but was wondering if anyone has tried Rituxan?

The past 4 months have been difficult to say the least. After receiving plasmapheresis they left the line in his neck (his arms wont take anymore) and wound up with staff infection. His kidney levels were way out of wack due to cyclosporiene and blood pressure meds, he is now off cyclosporine and blood pressure meds (cyclosporine was causing HBP) He has now had a total of 4 rituxan treatments and seems to be back on track - I have to remind him that he was out for 4 months (in the hospital for a total of 44 days beginning in April through the end of june)and it's going to take a long time to get back. Still getting IVIG every 4 weeks.

I almost tried it a few months back. However, after I learned about the possibility of getting PML (activation of the JC virus with subsequent demyelination and death) since I also use Cellcept, I decided it just wasn't worth the risk for the possibility of the modest positive effects it may offer.

From what I understand, rituxan really doesn't show much effectiveness unless the patient has MuSK positive MG. In those patients, it seems that the longest remission ever achieved was between 1-2 years and something as simple as a viral infection can send you back to square one. In fact, the next clinical trial will be only using MuSK positive patients.

Good luck to your husband. Hope he is MuSK positive and has a great improvement.

Missy

Missy, I thank you so much for your input. No one explained to us the consequences. All I know is that it seemed to be our last hope. He has been on cellcept, immuran and lastly the cyclosporine and none of them helped. I still wonder, as this disease is so under researched that I suggested starting over again with the Cellcept, unfortunately I was met with negative responses. It has come to the point now that I/he will doanything for a simalace of a normal life for him. I lost my job because I believe my boss couldn't cope with his/my life of illness, hospitals ect. (boss is/was a Billionaire and thought I should take him to the best doctors, easy for him to say), the good thing is that I am able to be around to see what is going on, and since posting earlier this am - he feels like crap tonight. The roller coaster ride. I would go anywhere and do anything to help him.
He has been intubated 4 times since diagnosed 4 years ago. He is much stronger than I could ever be and I give you and all those with MG my prayers every single moment of my day! But one needs to pay the mortgage - so I must look for work soon unfortunatley. BTW I am picking fresh Maine Blueberries every day lately if any one wants some let me know, if you pick up the shipping i'll do the picking!!

Have you all considered the Revimmune protocol? I'd do that before Rituxan if I was faced with such a dilemma. It could possilbly adjust his immune system and then allow the body to accept the immuno drugs better. There is a ton of info on the web about it.

Good luck with the Rituxan!

Missy

OMG Missy, Husband was in a car accident last friday and needed to be hospitalized for back pain (he has had 12 back surgeries) - He was doing fine yesterday and when I went in this morning he was in ICU - they think he was on to many pain meds and while he was sleeping he aspirated into his lung(s). (He has COPD as well) anyway now he has an infection in his lungs and was running a fever this morning. I am so scared after reading up on the PML, et al. It has been one heck of a day to say the least - I just came home for a few minutes and am my way back to the hospital he is in a very good local community hospital, not Maine Medical Center. I printed out the info from the web on PML for the nurse to give to his primary care dr. - his Neurologist is at Maine Medical - I dont know if I should have him transferred - I am soooo scared - I have not told him anything about the info I found on the side effects of Rituxan, and I feel absolutely numb!!!!!

I wish I could give you more than my prayers. I really hope he will be ok soon!

Sorry things are going so badly. Hope the aspiration pneumonia resolves quickly!

Yes, the PML "side effect" was scary enough to read when just thinking about trying it...can only imagine how you feel. Try to take heart in that the cases are rare, and the odds ARE in his favor that he will be just fine. However, you may want to consider whether or not to continue, remembering that the PML can occur for up to a year after the LAST infusion.

Hang in there and keep us posted.

Missy

Hi Janet

thinking of you and your husband at this trying time, hope things start improving soon
take care
redtail

Well they transferred him to Maine Medical tonight as things were getting worse (breathing trouble) - they will hopefully do a plasmaphersis tonight. I think I am going to discourage the Rituxan treatment (I don't think it's helping anyway) I am going to inquire about the revimmune - blows my mind that I find out more about MG here, thanks to you all, than I do from any of the docs, I am so angry that they overdosed him on pain meds - this should not have happened.