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Old 07-10-2018, 06:20 AM #141
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Default Anti-mag and WM

I was diagnosed last year with anti-mag and WM. I go to the Mayo Clinic and have had 2 rounds of Rituxin to treat my anti-mag symptoms. In addition to PN, it has caused high blood pressure and digestive problems as a result of mylen degeneration of nerves and muscles to vital organs. Rituxan therapy has been very good at reducing my numbers and symptoms but not long lasting. I am hopeful of some new targeted therapies in the future that will be more effective so I don't have to take Ibrutinib. Trying to put that off as long as possible. It took 12 years for someone to finally diagnose me. Very frustrating! But now I have great doctors at Mayo!
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Old 07-10-2018, 06:47 AM #142
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Hi Valcox

Welcome to NeuroTalk .

It is good to read that you are getting excellent care.

Best wishes.
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Old 01-01-2019, 08:29 AM #143
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Default anti-mag

i have been diagnosed with AM as of lastv week. i have had symptoms for
the lst 5 years but none of my former doctors did not recpgnized it.

my neurologist is recommending Rituxin but i have some concerns about
side affects.

any suggestions appreciated.

Jim
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Old 01-01-2019, 02:52 PM #144
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Hi Jim

Welcome to NeuroTalk .

This information about Rituxan might help you Rituxan Monograph for Professionals - Drugs.com .

Best wishes.
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Old 01-03-2019, 12:25 PM #145
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Default rituxan momograph

i read the document especially the warnings. pretty serious. need to talk to

my neuro again.

jim
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Old 06-08-2020, 12:42 AM #146
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Default Any Anti-MAG folk still there?

Hello,
I’ve just joined this forum because I’m looking for other people around the world who have been diagnosed with Anti-MAG Neuropathy.
I don’t know anyone else with this condition where I live in Australia, though I’m sure they exist, even if it is a rare disorder.
If you’d like to share your story with me, particularly about what has helped you improve and/or live with the symptoms of Anti-MAG, I would love to hear from you.
I was diagnosed 18 months ago, but have probably had it for over 10 years , firstly in a mild form, and originally diagnosed as neuropathy from a possible pinched spinal nerve. My symptoms accelerated about 3 years ago and I sought a re-diagnosis nearly 2 years ago. Since the diagnosis of Anti-MAG Neuropathy (my titre = >70,000) with IgM monoclonal gammopathy , I have been treated with Rituximab every 3 weeks x8, but it had no apparent effect. Three months after that I was started on IVIg Privigen 50g every 4 weeks. I have been on IVIg now for 9 months. After the first 2 treatments of IVIg, I noticed a significant improvement in symptoms and was able to start walking without the aid of a stick. Since then, my neuropathic symptoms have plateaued. They are no better, but also no worse. Fatigue and temperature control are still a huge problem though.
So.....are any of you who used to chat on this thread still out there? Or anyone else new to this forum?
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Old 06-09-2020, 12:57 AM #147
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Hi Skwiss, I am a 66 year old woman who lives in Australia. After a year of health investigations, six months ago I was finally given a diagnosis of anti-MAG PN. This condition developed quickly and is considered very rare particularly in women. I also have regular blood tests for monitoring the condition of MGUS, which is another health issue I have to deal with.
With the situation of COVID 19 and my auto immune disorder, I am waiting to hear from the hospital when I can start some treatment with Rituximab. I was very interested to hear your views on the various treatments you have followed. I am struggling with this condition as my quality of life has deteriorated drastically. My walk, balance are severely effected - thankfully I see my physio twice a week which helps me to manage. I do get bouts of depression and will be seeking guidance from a psychologist. I would like to hear more on how you managed this condition.
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Old 06-09-2020, 07:30 AM #148
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Hi Krysa,
It’s lovely to hear from a fellow Aussie! I’m under the care of a haematologist and neurologist in Melbourne. They both acknowledge that there is not a lot of experience in this country with Anti-MAG PN and I’ve found medical journal articles online that they hadn’t ever seen! So I feel as if we’re all trying to find a way forward together.

Initially, my haematologist wanted me to have a cocktail of Cyclophosphamide, Rituximab and Dexamethasone. At the last minute my neurologist changed it to Rituximab only as there usually worse side effects with the cytotoxic drug. However I still reacted to Rituximab, with several days of fevers and chills and then fatigue for two weeks. I only had one week out of three when I felt I had any energy.

At that stage I needed a stick to leave the house and couldn’t walk easily in the dark. Eighteen months ago I also had a sural nerve biopsy during the diagnostic stage. That has added to the numbness in my left foot and still causes constant pain.

In terms of management, I’m thankful that I have an extremely helpful husband and who drives me wherever I need to go. It has been very hard to have to give up driving, as is required legally for people diagnosed with PN. Before COVID-19 I was about to apply to be medically tested to regain my licence. I applied for a government health care plan, but didn’t get to start with a nutritionist or exercise therapist before COVID restrictions started. I support my legs and arms with extra pillows and sometimes a bed cradle at night to help with the pain. I tried Pregabalin (Lyrica) for a while, but it didn’t help and I try to limit my use of medications anyway.

The other significant help in facing my health problems has been my Christian faith and the support of friends across the world who pray for me.

What helps you??
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Old 06-09-2020, 03:48 PM #149
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Hi Krysa and Skwiss

Welcome to NeuroTalk . I hope that the Covid-19 restrictions will allow you both the get the professional help that you are looking for.

This fairly general information about anti-MAG neuropathy may help both of you.

Anti-MAG Peripheral Neuropathy - GBS/CIDP Foundation International.

Best wishes.
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Old 06-09-2020, 09:04 PM #150
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Thanks Kiwi33,

Over the past 18 months I’ve tried to read everything about Anti-MAG PN that I can get access to! Your article from the GBS/CIDP Foundation was one of the first that I ever read.

There are different views on effective treatments. Most people agree that more research needs to be done but, as with most rare disorders, it is difficult to get the necessary funding.

I’m thankful that in Australia we do have access to government funded treatments and can try different options without suffering financially. And, so far, COVID-19 has not prevented me from continuing treatment in hospital.
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