AnonymousJanuary 30, 2008 at 11:20 pm
[SIZE=”3″]I understand that you have taken Rituxan. Did it help? If helped, for how long? Was it covered under Medicare?
Is your dx CIDP? If so what has been your most helpful treatment?
Neuro today sending me for a consult in AM to see if a nerve/muscle MD can recommend some other treatment as the one i’m on isn’t doing a thing for me and i’m slowly getting worse. I’ve had 13 IVIG tx, on Cellcept 2000 mg, Arava 20 mg and Prednisone 40 mg. The Prenisone is being reduced by 5mg a week.
I was on Prednisone 80 mg and am getting quite a few side effects from it.
I was dx Nov 2007 by EMG, blood work, and spinal tap.[/SIZE]
Thanks for any info you can give me
AnonymousJanuary 31, 2008 at 10:02 am
My husband had several Rituxan treatments in 2006. They really helped him a lot. Now, Medicare won’t cover Rituxan for CIDP, so he gets by with IVIGs monthly and a lot of pain medication. I tried many avenues to see if we could get him the Rituxan, but all were dead ends.
January 31, 2008 at 11:16 am
If Norb does not reply, check his members name and look at the bottom, it gives his dx. As I mentioned, I did not pay attention to the exact name, but there are CERTAIN blood test for odd variances. His blood work indicated something that allowed him to get the rituxan covered because it fell under a specific cancer. I KNOW he will help you if he reads today, and he will set what I have mentioned straight, as he is the pro!!! Good luck.
AnonymousJanuary 31, 2008 at 11:57 am
Beth, here is a link to the Rituxan thread Cheryl pointed out: [url]http://www.gbs-cidp.org/forums/showthread.php?t=204[/url]
Normally, Rituxan is not approved for CIDP. Because of that I waited two years until my diagnosis changed to lymphoma as the underlying cause. However there are some members on this forum who did receive Rituxan for CIDP. There is an older thread “Medicare paid for my Rituxan ” started by John: [url]http://www.gbs-cidp.org/forums/showthread.php?t=3432[/url]
Perhaps you could send him a private message if you want to find out more about it.
A tip: Sending private messages or posting to an existing active threat probably gets you answers faster than starting new threads for something that is already being discussed. I don’t look at the main forum where you posted your question to me very often but another member pointed it out to me by sending me a private message a few minutes ago.
AnonymousJanuary 31, 2008 at 12:28 pm
Beth, here some additional thoughts about Rituxan. In my opinion it is the better treatment for CIDP because it goes to the root of the problem. If it does work – and this is not always the case – it removes the “sick” B cells which keep “spitting” out the antibodies attacking the myelin. These cells may come back after a while requiring a repeat treatment, perhaps once or twice a year. This would be a lot better than monthly IVIG’s. I must add that I am not quite sure of the role T-cells play in common CIDP.
And then there’s the question of cost. Just yesterday I received the first statement from Medicare about my Rituxan treatment in October. The total cost for the four weekly treatments was around $25,000. Compared to that my last IVIG was somewhere around $40,000. If you look at annual costs Rituxan is going to cost me $50,000 while monthly IVIG would cost $480,000. I wish someone would convince the insurance companies and the FDA of that.
AnonymousJanuary 31, 2008 at 1:04 pm
Just another quick note about the Rituxan cost. It is still somewhat a drug under trial for CIDP or MGUS, and as such the drug manufacturers are interested in promoting it as a remedy. Bescause of this, there are patient assistance programs sponsored by the drug companies. The amount of assistance may vary according to household income, but it is undeniably a great help. Your doctor should be able to give you the phone number for the Drug assistance program. It’s worth a try.
AnonymousFebruary 1, 2008 at 6:01 pm
Beth, Genentech, the maker of Rituxan, has a reimbursement program called “Single Point of Contact Reimbursement Program”. This is supposed to help patients who don’t have enough financial resources. If you’re interested here is a link: [url]https://www.genentechaccesssolutions.com/rituxan/patient/index.jsp[/url]
It includes a phone number you can call.
AnonymousAugust 20, 2008 at 4:46 am
I have MGUS with peripheral neutopathy. I have M Protien. I found out about 4 year ago when I went to my primary physician because I was having difficulty walking and a little problem with balance. She sent me to a neurologist and he did the shock and needle test and ordered some blood tests. The blood test revealed the M protien. The level was just .2, but that little bit was really doing a lot of damage. Not sure what the protien level is now, but about three months ago it was .7. My Dr. tried a steriod and that did not help at all. All that was being done was blood tests periodically. I was told there was no treatment. I take Lyrica for the nerve pain and Provigil for exhaustion. I read on the internet that Mayo was doing a clinical trial using Rituxin for MGUS related neuropathy. I called and make an appointment and was approved for the trial. I have had four infusion of Rituxin. The last infusion was about a month ago. It seems to have helped a little. I still have difficulty walking, but it seems that I have a little more feeling in my feet than before. I go back Oct 3. If I have improved or am the same, I will receive another four infusions. If I am worse, I will not be permitted to continue with the trial. I am very hopeful that this will help me and others out there like me. I think Mayo is still taking volunteers for the trials which are being held in Jacksonville, FL (where I am going), Tucson (I think), Arizona and Minneapolis, MN. The drug company furnishes the Rituxin for free. I am counting on Medicare and my insurance to cover the rest. I might have some out of pocket expences, but I don’t think it will be very much. It’s 4:40 a.m. here in Florida. Couldn’t sleep, so please excuse if some of this doesn’t make sense.
AnonymousAugust 20, 2008 at 11:31 am
thank you for posting. I’ve been wondering about this trial and its outcome. Do you know when it is going to be over? I had two sets of Rituxan infusions , one in October and the last one in May. each one was 375 mg once a week for four weeks. Unfortunately, I have not seen any improvement. However my symptoms have been stable more or less. I’m scheduled for the next infusion in October but this time we are doubling the amount and I will receive infusions for eight weeks. Instead of going down my blood tests two months ago showed an increase in anti-MAG protein. I had blood drawn again yesterday but it will be a week or two before I get the results. The problem seems to be that although Rituxan reduces B cells, it does not affect long-lived active B cells, called plasma cells which continue to produce the “bad” protein. My oncologist told me yesterday that there are new drugs that affect plasma cells which are used for myeloma patients. He was not very clear on that but I think he sounded like he might try that down the road.
AnonymousAugust 20, 2008 at 12:20 pm
Wow Norb! Now that is one hefty medical bill on medication. Gosh that is high! I would feel sorry if someone did not have medical insurance while waiting to get some assistance or help! I have a cousin with Leukemia and his bills are pretty high too.
Just asking! Because they may have to treat me with some of these types of treatments also. Does Medicare cover this all or do they only pay a percentage? I am on that Humana Drug Plan and some of my meds are no copay while some are. My husband where he works at won’t insure me. And if they are insure me he would have to pay $650.00 a month. So I only have the Medicare Insurance. Because of prexisting medical conditions. So that has me of major worry. Ending up owing for a payment on a house! I think it’s rediculious the prices of some things. Especially in medical care. Everybody needs medical care at one time or another and some need constant care. I’m glad I have some form of insurance but it does not pay everything. I learned one thing about being sick. You can have all the money in the world. Get sick with a very bad illness and can loose everything you have with the blink on an eye!
AnonymousAugust 20, 2008 at 1:49 pm
The trial is for 2 years. I took 785 mg of Rituxin once a week for four weeks.
As I said before, I think it has helped some. The tingling and numbness around my ankles is a little better. The feelings that neuropathy brings are hard to describe, but the tight feeling is better. The feeling of tightness, like a huge band was squeezing my feet and ankles is better. I am not familiar with medical terms, so there is so much I don’t understand about this. I am just doing everything I can to get better. My overall health had always been excellent until this thing jumped on me. I will keep you up-to-date on my appointments at Mayo. About Mayo. I can’t say enough about the staff and clinic. They are all top notch. They are always pleasant, courteous and helpful and they taken you in at your appointment time. I wouild like to go there for my primary care, and I just might do that. It is a 160 mile drive from my home.
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