I have posted to several discussion and I don't see it. What is happening? am I no longer able to post. Have anyone else had this problem? God bless. Cabbage7

Today I got the results from my Musk antibody test and it was positive. I will be taking rituxan infusion in November if my insurance approve. She thinks I have been positive for a while now. I have always thought that mestinon had stop being effective. I am not pleased with the side effects. Have anyone experience a decrease in red and white blood cells and platelets. Kidney problems or dizziness after the infusion. Should I have a driver afterward because I live one hour away from hospital. God bless. Cabbage7

@ cabbage7.
Glad you got a positive result - on your MuSK test.
Now you can move forward with your treatment program.

Re: Rituxan. In January 2013, after my Neuro tried quite a few other Meds & Infusions, from the MG Medical Bag of Tricks, I then received 4 Rituxan Infusions, one a week for a month. (All this: being done to try to pull me farther away from the tipping point of crisis.)

It has been a long haul, but my Neuro now believes Rituxan is a large factor in my slow but steady recovery.
Starting this Tuesday September 3: I'm receiving a ''Rituxan Tune-up'' of 2 Infusions. One Infusion a week, for the next 2 weeks. I'm late in receiving this tune-up, by a couple months, but there does not seem to have been a downside to this. In fact, my recovery has only really taken off, in the last 2 months.

I'll ask the clinic and my doctors to note any changes in my blood panels, and will give you a report.
This should be about 6-weeks from now, in mid-October.
I'll try to get the same info, from the Rituxan Infusions, from back in Jan/Feb.
- Ross

It seems that the use of Rituxan, to fight MG - is still an ''off-label'' use of the product.
To the best of my knowledge, the only autoimmune disease, for which Rituxan has received FDA-Approval - is Rheumatoid Arthritis.
Rituxan was originally developed to combat Leukemia and similar cancers.
Over the last few years, Rituxan has also been used ''off-label'' to fight organ-transplant rejection. Rituxan is also being used ''off-label'' to fight Fibromyalgia - and other conditions - that are believed to have a significant autoimmune component.

Cabbage7, I have a Facebook page called MuSK Positive...everyone on there has been tested positive for the MuSK Antibodie. I have been on Rituxan for 1 1/2 years. 9 infusions ..you can see what drugs I have been on and the doctors at Yale Medical Center doing the research on Rituxan for MuSK Patients. I am in the clinical trial phase 2, next paper is out some time this year....

Hi, I had the anti MuSK test and was positive. If the insurance approve, I will begin the Rituzan infusion, which will be the first week November. It seems I may have had it for a while. My regular Neurologist never tested me. I have been going to UIC, Chicago to a Neuroscience Center. where I am in a Clinical Research. Mestinon has stop being effective for me the last few years. I am still taking 60MG 4/5 times a day. My speech is slurred, Swallowing, chewing and breathing. is still a problem for me. Maybe the Rituzan will work for me. God bless you. Cabbage7

I have been tested for all of the MG antibody tests, including MUSK. I was negative for all. The standard tests didn't cost me much at all because those could be processed through the local lab but the MUSK test was very expensive. With Athena lab they have a patient protection policy (PPP) which protects those that don't have ample coverage with their insurance company. It guarantees that the patient will pay no more than $500 out of pocket for the test. The actual cost of the test, as of December 2012 is $2,300 and some change. If your insurance covers 100% you will be refunded that money. If however, your insurance only pays a portion of it you will not be responsible for any more than $500. Same goes if they deny it completely. This does not apply to those that are self pay, unfortunately.

I paid the $500 just to get it out of my mind. It was very driving me a bit nuts not knowing so I just did it. I'm glad that I did the test though. As for other patients, we have stopped testing our patients for it. The only exception to that is those that are in-patient because it is covered at 100% if done in that setting. We have stopped mainly because of the cost and confusion that it causes in terms of the PPP and the order of the process, etc. For those on the mainland this probably isn't a huge issue but for us in Hawaii, the process is a big fat pain in the butt.

I am glad that those of you who are positive have an answer. I am also very happy to hear that you've found rituxan to help with your symptoms and overall health. Please keep us posted on your improvements. I am anxious to hear others say that they are in remission.

Aloha,
Angie

I am so glad you are finally getting good results. I was diagnosed in April and am on just Prednisone v40mg every other day. This is down from 60mg. Unfortunately, my symptoms are slowly coming back(slurred speech and fatigue mostly). I have an appt at Mayo on Thurs and hope to get some answers. I tested negative for the antibodies. The single nerve conduction test was very abnormal for me.

Sandra I had responded but I see it was not posted. I had the MuSK test which was positive. I am in a research program. I am on Mestinon and felt that it had stop during it job. I am waiting for approval from the insurance, then I will begin the Rituxan infusion. What type of symptoms did get from the infusion if any? I pray that it is working for you. God bless you. Cabbage7

Sandra I'm not to smart when it come to finding my way on the computer. I see were I made a mistake about my posting. I found it. I am happy that the Rituzan are giving you good results.

Ross, thanks for the information. It gives me joy when I read about the positive response some of you are having with the infusion. I hope things keep going well for you. God bless. Cabbage7

For anyone interested, that has the MuSK Antibodie, I have a Facebook page called MuSK Antibodie......

Made an error...this is the link to FB...
https://www.facebook.com/pages/Myasthenia-Gravis-MuSK-Positive/148547268548431

I'm ACHR and MuSK negative and my RNS testing is normal too. Still, Mestinon helps me. I have confirmed myopathy, POTS, and intracranial hypertension on top of suspected MG.

The MDA doc told me sometimes MG is a clinical diagnosis b/c some small percentage have another antibody for MG that they cannot test yet.

Carly