Does anyone have positive anti mag with their cidp?

General General CIDP Discussion
1

I have been diagnosed with positive anti mag along with the cidp. After being on ivig every other week for a year and a half it is no longer giving me the relief it used to. I was told by my neurologist this may be due to the positive anti mag and I may need to change to Rituxan. It is in the chemo family but only attacks the abnormal B cells. It is supposed to be a rare dx (anti mag) but we seem to be a rare group so I am hoping someone can talk to me about it. Thanks Peace Nancy

2

Hi Nancy, I have also been dx'd with anti-Mag although I'm not familiar with the "positive" portion of your dx. My symptoms began about two yrs ago but was not dx'd till Jan this year. I was initially given one course of ivig (4 treatments)with no results. Recently I was put on 50mg prednisone and just finished another round of ivig. I also just started chemo with cyclophosphamide. It would appear they are taking a shotgun approach to my therapy. Currently Rituximab is not authoriised for cidp cases in British Columbia Canada, although it remains the only promising therapy for this variant of cidp. I hope you do well in your therapy and and if you get the rituximab, you have a total if not lengthy remission. If you google "neurotalk" you will find a small discussion on anti mag. It will give you an idea of other treatment people are receiving.

cheers

3

Thank you so much for making me feel as though I am not alone. My neurologist told me that steroids do not address the anti-mag, but another neurologist gave me a one time infusion of prednisone prior to my ivig, it gave me a little more energy for a couple of days but that was it. My neuro also mentioned Cellcept and Methotrexate as a possible treatment. It won't be for another month before I change treatment, but I will let you know if it helps. I will goggle "neurotalk" thanks for the suggestion. Please stay in touch with how your treatment is working for you, remission for all!!!!! Peace Nancy

Boomer said:

Hi Nancy, I have also been dx'd with anti-Mag although I'm not familiar with the "positive" portion of your dx. My symptoms began about two yrs ago but was not dx'd till Jan this year. I was initially given one course of ivig (4 treatments)with no results. Recently I was put on 50mg prednisone and just finished another round of ivig. I also just started chemo with cyclophosphamide. It would appear they are taking a shotgun approach to my therapy. Currently Rituximab is not authoriised for cidp cases in British Columbia Canada, although it remains the only promising therapy for this variant of cidp. I hope you do well in your therapy and and if you get the rituximab, you have a total if not lengthy remission. If you google "neurotalk" you will find a small discussion on anti mag. It will give you an idea of other treatment people are receiving.

cheers

4

Hi Nancy

Here are a few links for you to read

http://neurotalk.psychcentral.com/thread27197.html

tp://neurotalk.psychcentral.com/showthread.php?t=27718&highlight=anti-mag

http://www.pdn-info.co.uk/index.html

Cheers

5

Thank you so much for the links, Boomer. I just finished my ivig today, another infusion tomorrow. I am a little blurry eyed, but what I read was incredibly valuable. I really want to also read more about Rituximed to see if the side effects are so bad it would outweigh the benefits. I currently get infusions 4 times a month and I am always wasted the day after, my symptoms seem to be progressing, so I am hopeful there is a treatment more tolerable. It is a beautiful day here in the Pacific NW, I can look through the woods and see Oyster Bay, so all is not bad. I hope you find things that bring you happiness. Peace nancy

Boomer said:

6



nancy said:

Thank you so much for the links, Boomer. I just finished my ivig today, another infusion tomorrow. I am a little blurry eyed, but what I read was incredibly valuable. I really want to also read more about Rituximed to see if the side effects are so bad it would outweigh the benefits. I currently get infusions 4 times a month and I am always wasted the day after, my symptoms seem to be progressing, so I am hopeful there is a treatment more tolerable. It is a beautiful day here in the Pacific NW, I can look through the woods and see Oyster Bay, so all is not bad. I hope you find things that bring you happiness. Peace nancy

Boomer said:

7

Hi Boomer, I have an appointment with my hematologist/oncologist tomorrow. I have read as much as my mind can hold on Rituxamed and anti-mag and hopefully my list of questions will give me some answers. If you would like I can let you know how it goes. Peace Nancy



Boomer said:



nancy said:

Thank you so much for the links, Boomer. I just finished my ivig today, another infusion tomorrow. I am a little blurry eyed, but what I read was incredibly valuable. I really want to also read more about Rituximed to see if the side effects are so bad it would outweigh the benefits. I currently get infusions 4 times a month and I am always wasted the day after, my symptoms seem to be progressing, so I am hopeful there is a treatment more tolerable. It is a beautiful day here in the Pacific NW, I can look through the woods and see Oyster Bay, so all is not bad. I hope you find things that bring you happiness. Peace nancy

Boomer said: