Nancy... I have been on a quest to get Rituximub since I was on here last. No luck so far. I am still trying. I have been approved to get IVIG infusions, but I am not sure of the benefit of Gama Globulin. I am very interested in how the Rituximub treatements are working for you as well as the treatment protocal and the cost of the treatments. Thanks

Bob

Contacting Nancy
 

If anyone knows how to contact Nancy please let her know I am trying to find out how her Rituximab treatments are working out. I will be checking the posts weekly

Thanks

Bob

Just dx with Anti Mag Neuropathy
 

Hi,
I just found all of you. I have peripheral neuropathy with numbness and gait weakness from toes to mid calf. I had MRI negative,electric nerve test (failed) and today my neurologist called and said I have Anti Mag Neuropathy and referred me to Dr David Simpson professor of Neurology who specializes in autoimmune neuropathy at Mount Sinai in New York City. I have an appointment Jan. 13, From what I am reading on this forum nothing really works as a cure. I don't have a problem with plasmaphoresis but chemotherapy is scary when they don't know the long range effects of some of these drugs. Many of you swear that Rituxan therapy has worked. Will insurance pay for this? $20,000 a dose seems overwhelming. Any improvement on holistic therapies like Lecithin and B12 or fish oils? Please reply...very confused but glad I am not alone.
Edelstep

Hello, Edelstep. After a couple of false starts, the nuro dept was able to get my treatments mostly covered. I believe it was coded as chemo therapy -- perhaps the secret is how your dr. or hospital codes it. Wish I could be of more help -- but the hospital didn't explain and I didn't ask. Good luck. NancyW

Hi Folks.
I am Mike from the UK (new member) I was originally diagnosed with Axonal Peripheral Neuropathy in 2004 and have been seeing a specialist Neuro doctor every year since that diagnosis. In 2008 after more extensive blood tests the diagnosis was changed to Anti Mag Neuropathy. He suggested I should have IVIG but I studied all the reports and decided against this. In December 2009 he suggested that I try Rituximab......this was not available on my private health insurance but he said he would apply for treatment through the National Health Service at Norwich University Hospital. After three repeat applications I was granted Rituximab treatment in December 2010. Treatment was for two 1000mg doses of Rituximab 15 days apart.
I am 70 yrs old and was not looking forward to this treatment but as it is the only product with any positive reports I decided to go for it !!
I was treated in the Rheumatology dept at the Hospital as a day case...arriving at 8.30 and getting all the usual checks plus a 1hr pre med with paracetamol, sickness pills, antihistamine and a Methylprednisone infusion. I was then started on Rituximab very slowly up to a maximum drip , as I had no side effects, which took 4hrs. The second infusion on 29th dec was exactly the same process but much quicker as they could speed the infusion rate.
At the moment I feel fine but have been told I will not know of any benefits for about three months.
To mention my symptoms....Difficulty walking and cannot stand without holding onto something or someone. Balance is the worst of my problems but added to that I have lost all muscle and feeling in my legs below the knees, some feeling in my fingers and have bladder and bowel problems.
Any questions anwered.........Regards Mike

follow up on rituximab
 

Hello, Mike.

Glad to have one more person to compare results after Rituxan treatments. Please continue to post and I will too.

I've had symptoms for about 12 years but only impacted walking, balance, etc the last 5 years. Had Rituxan treatments in Sept '09 and believe I am seeing very subtle positive differences. Have exercised steadily to keep muscles in tone so that they will be in shape to work when the nerves are able to tell them what to do. Very simplistic language - but the exercise pays off in lots of ways, physically and mentally.

Hope to hear further from you.

Regards, Nancy W.

Hello Nancy

Have you had any further treatments of Rituximab since Sept 2009 and if so how many?

I was told that if I experienced some improvement I could possibly get a redose at approx one year interval. Anyway I will have to wait a few months to find out if it is working for me......keeping active at the moment although no muscle or strength in the legs. Brain is still very busy (I think).. Will keep in contact.
Best wishes Mike

Good morning. No, I haven't had any further treatments. after the first set in Sept '10, the neuro doc set my next appointment at 6 months, which will be this March. I don't know what tests they will do - probably blood work and manual testing of foot/leg strength. I think that I remember him talking about repetition after one year -- depending on patient's condition. I will be sure to post after the March appointment. Regards, Nancy W.

Chemo
 

Hi Nancy,
Thankyou for responding. I went to Mt Sinai Jan 13. The Director of neurophysiology Dr David Simpson says I have classic Anti Mag nueropathy. He wants me to see a Hematologist because I also have family hx of antiphospholipid syndrome. I also have to see a Rheumatologist because I have severe Reynards syndrome. All of these are autoimmune disorders. Has anyone indicated that this neuropathy could be genetic? Could our children get it?
Also Nancy, How was your Chemo given? How long was the treatments? What were the side effects?
Thankyou so very much for responding. It is so great not to feel so alone.

Me too
 

I haven't been around in a while, but I was just checking the place out when I saw this post. I have MGUS....have had it now for 5 years. I get checked once a year to see if my very very low level of the abnormal protein has changed.

This is an excellent article on this blood disorder. "Dear Mayo Clinic:
Can you tell me if there is any cure or even some type of relief for MGUS?

Answer:
Monoclonal gammopathy of undetermined significance (MGUS) is a blood disorder that occurs when there is overgrowth of identical plasma cells in bone marrow. Since it is the job of any given plasma cell to make a single (monoclonal) immunoglobulin protein, an increased population of identical bone marrow plasma cells may be detected by discovery of a monoclonal protein (M protein) in the blood stream. Rarely, MGUS can be a precursor to cancer, such as multiple myeloma, or other serious blood disorders. But for most people, MGUS is harmless and doesn't cause symptoms or require treatment.

MGUS is a common condition that becomes more prevalent with age. About 3 percent of people 50 and older and 5 percent of those 70 and older have M protein in their blood. The highest incidence is among adults age 85 and older. And MGUS is more common in men than in women.

Typically, MGUS is found during a blood test that's done for another reason. The test, called a serum protein electrophoresis, can reveal abnormal proteins and unusual amounts of normal proteins.

A doctor who detects monoclonal gammopathy may recommend further testing to determine what type of M protein the body is making and how much. The tests can also help a doctor rule out other medical conditions that may be causing production of M protein.

If the doctor determines that the presence of M protein isn't the result of an underlying medical condition, then, typically, monitoring suffices for MGUS follow-up care. Although MGUS has no cure, the condition rarely causes symptoms, and usually no treatment is necessary.

However, in a minority of cases, over time the cells in bone marrow that make M protein can accumulate, crowding out healthy cells. Or, the M protein can damage other tissues in the body. In this situation, treatment with chemotherapy may be necessary. The risk of developing a more serious condition increases the longer a person has had MGUS. There is about a 1 percent per year risk of developing a significant problem.

People who have MGUS usually require a yearly evaluation including a blood test to monitor changes in their level of M&nbps;protein and to check for other symptoms. Some who are at low risk of developing a more serious disorder may require monitoring less frequently. The frequency of checkups depends on the size and type of M protein the body is producing, as well as a person's medical history. If you've been diagnosed with MGUS, talk to your doctor about establishing an appropriate follow-up schedule."