Anti-MAG treatment update
AnonymousSeptember 11, 2013 at 12:19 am
I have posted before under this “CIP/CIDP” title and often wondered if anyone else has the “Anti-MAG” diagnosis. I developed peripheral neuropathy – mostly numbness, with little pain – in April 2012, soon after hip replacement surgery. Blood and spinal fluid samples taken in hospital, during IVIG infusions in June 2012, clearly indicated “anti-MAG”. Of three options offered, I chose to pay ($20,000) for a single course of four Rituxan infusions rather than try ongoing plasma exchange or Prednisone treatments. My nerve damage seems to have been halted at about mid-calf. Neurology exam this week, compared with 6 months ago, showed some slight improvement in sensation of “sharp” and “cold” applications on soles of feet and lower calves – not much, but encouraging. Prognosis is that I may see some further slight improvement over the next year, then have to live with what condition I am in thereafter. No apparent case for further Rituxan infusions, considering the side-effects on the immune system – let alone the cost !
Weekly physical therapy for “gait training” and “proprioperception” (and nightly repeat exercises) has steadily improved my balancing and walking ability. The idea (hardly a theory, more a hope) is that nerves in the knee joints are finally being listened to by my brain – who knows, but something has caused a useful improvement. I still use a cane for security – or a walker in crowded places where people may not see the cane – but I now walk more upright and with a longer stride. I need the cane (or a hand-hold) much less than I did a year ago. It is good for me to practice walking on uneven surfaces such as grassy areas, where I prefer to use two hiking poles. We put up grab-bars around the house and an extra handrail on the staircase.
Hope this may be of use to others suffering from this rare variant of CIDP.
September 11, 2013 at 10:34 pm
There isn’t as much writtern about Anti-myelin-associated glycoproteinas (Anti-MAG) as there is about other peripheral neuropathies due to it being so rare. However, the results of a very recent clinical trial can be viewed here: http://www.neurology.org/content/80/24/2217.abstract
Another article discussing Anti-MAG treatment experiences can be viewed here: http://gbs-cidp.org/newsletters/printer%20versions/treatment%20experience%20in%20patients%20with%20anti-mag%20neuropathy.htm
AnonymousSeptember 12, 2013 at 2:55 am
Jim – many thanks; we had not seen that recent study. I feel I am among the more fortunate patients, in that Rituxan apparently halted the progress of the attack on my nerves. I think my weekly physical therapy, and a steady exercise regime, is the main reasom I am coping as well as I am.
March 2, 2016 at 8:05 pm
Hi I have just been diagnosed with anti mag neuropathy and my anti mag blood results indicate my level is 1:102000
I am waiting to see my neurologist to discuss my results and treatmenty balanced is no good I have a gait I am 53 yes old and if anyone has any advice for me on this condition I would appreciate hearing from you thanks
March 2, 2016 at 8:06 pm
Hi I have just been diagnosed with anti mag neuropathy and my anti mag blood results indicate my level is 1:102000
I am waiting to see my neurologist to discuss my results and treatment
My balance is no good I have a gait I am 53 yes old and if anyone has any advice for me on this condition I would appreciate hearing from you thanks
May 8, 2016 at 5:33 pm
What happened when you went to see the neurologist?
I have seen 2 now, but since I am still fully functional, they are offering no help.
March 2, 2016 at 9:56 pm
Rituximab is considered to be one of the most promising drugs in the treatment of anti-MAG peripheral neuropathy. This drug is an antibody against a protein which is primarily found on the surface of B cells which, when attached, destroys the B cells. Because of its ability to suppress the immune system, it has been used to treat anti-MAG neuropathy in the hopes that it will destroy cells that would target necessary glycoproteins on the Schwann cells. Studies in patients has shown that most patients experience marked increase in sensory and motor abilities within the first few months of therapy.
I suggest you talk to your doctor and explore the possibility of using Rituxan. This is not a low cost infusion treatment and you will need to confirm coverage by your insurance company before beginning treatments.
March 26, 2016 at 11:00 pm
This is must reading by those suffering from Anti-Mag:
March 27, 2016 at 12:56 pm
I have just been diagnosed with anti-MAG neuropathy. I live in a small town and the neurologist has not treated anyone with this condition. He did not tell me my level and said the condition was treatable and not life threatining. He is sending me to a hematoligist, whom I have not yet seen. Since doing reading it seems like it is not curable, and is life life altering. Going to a metropolitian area for treatment will be my next step. Also, will be pursuing a holistic treatment approach. I am 65 and am sure I have had this condition for two plus years. I had been going to a podiatrist and was treated for plantar fasciitis. Recently a physical therapist I was seeing referred me to the neurologist. In the last month numbness has moved to my fingertips. My balance and strength are still good.
July 28, 2016 at 5:17 pm
I went to see a neurologist at the Cleveland Clinic in Miami. I am still fully functional, as well, he offered no help whatsoever. Have an appointment with a neurologist at “A Center of Excellence” in Tampa on 9/20. We shall see….
Have you read “The Wahls Protocol” or “The Paleo Mom”? They suggest diet can be helpful.
July 28, 2016 at 11:04 pm
5523cats, thanks for your continuing contributions here! You are making a difference in our community!
July 12, 2017 at 10:32 am
I was diagnosed with anti-MAG in the fall of 2015 at the age of 58 however I am new to this forum. I went through steroids, IVIG and one course of Rituximab. Thus far, my condition has continued to progress. Does anyone know if there are treatments or trials beyond Rituximab that anyone is pursuing? It is a frustrating condition for sure but I hope that more studies/research will be conducted. Thanks!
July 12, 2017 at 3:37 pm
The following Clinical trial for Anti-MAG was updated in June 2017. Perhaps it’s worth reading for those suffering from this disease.
July 26, 2017 at 4:37 pm
I am really wondering, what your symptoms are? Also, what has the progression of your symptoms been? Were you a very physically active individual? As mentioned, I was diagnosed in March of 2016, I am 67 now. My balance is still fair to good and I move at 100% – if I wear tennis shoes. The active hand tremors have increased, just recently, and it makes doing some things quite difficult. It is my understanding IVIG does not produce results for our condition and Rituximab usually requires more than one treatment. My neurologist is the head of Neurology at USF and is considered an expert on our condition. He said treatment with Rituximab will be avoided until my functionality is diminished. However, he cannot tell me how long that will take. I do a lot of yard work, ride my bicycle an hour a day, and workout with a personal trainer 3 days a week to work on my muscle strength. However, since I don’t know anyone else with the condition, it is hard for me to determine if my progression is slow or aggressive, and what to expect in the future. I hope to hear from you!
July 27, 2017 at 1:18 pm
Hi..This response is for 5523Cats….not sure if you were asking me (Heidi) or Jim the previous question but I will answer for my situation. I was a very active person, diagnosed with anti-MAG two years ago at the age of 58. Tingling, numbness and decreased balance and strength have been my symptoms. I had prednisone, IVIG and one course of Rituximab with no improvement. I have been approved for a second round of Rituximab next month. I don’t know if it’s helping and it may be slowing progression but since I don’t have a sense of what it would be like without, I’m not sure. I still try to stay as active as I can but have had to cut work hours and limit what I can do in the yard. Use a cane and have great difficulty with stairs. You sound like you are still very functional which is terrific. I tolerated the first round of Rituximab very well-no side effects so that is good I just don’t think it helped me. I believe it does help some folks so best of luck moving forward. Heidi
July 27, 2017 at 2:01 pm
I am certain I had the condition for at least 2 years prior to my diagnosis. Initially treated by a podiatrist for plantar fasciitis, there were several signs he should have picked up on and he should have sent me to a neurologist. Symptoms progressed more rapidly after receiving a singles vaccination. They do not recommend it for persons with autoimmune conditions, but I did not know that was the problem at the time. Your symptoms sound similar to mine, but more severe and your timeline seems to be more aggressive. I take supplements, do a modified paleo diet, and eat organic etc… Don’t actually know if that is helping or not. Very difficult to know what to do since there is so little information available. Regards, 5523Cats
August 9, 2017 at 1:24 pm
Hello 5523 Cats and Hiedi
I’m living in France and i have a neuropathy anti mag with igM monoclonal
In switzerland, the research works about a new treatment:
I don’t want for the moment to try the rituximab despite my tired
August 9, 2017 at 5:39 pm
Interesting I found reference to this only yesterday!
Anti-MAG (myelin-associated glycoprotein) neuropathy is a disabling autoimmune peripheral neuropathy caused by monoclonal IgM autoantibodies that recognize the carbohydrate epitope HNK-1 (human natural killer-1). This glycoepitope is highly expressed on adhesion molecules, such as MAG, present in myelinated nerve fibers. Because the pathogenicity and demyelinating properties of anti-MAG autoantibodies are well established, current treatments are aimed at reducing autoantibody levels. However, current therapies are primarily immunosuppressive and lack selectivity and efficacy. We therefore hypothesized that a significant improvement in the disease condition could be achieved by selectively neutralizing the pathogenic anti-MAG antibodies with carbohydrate-based ligands mimicking the natural HNK-1 glycoepitope 1. In an inhibition assay, a mimetic (2, mimHNK-1) of the natural HNK-1 epitope blocked the interaction of MAG with pathogenic IgM antibodies from patient sera but with only micromolar affinity. Therefore, considering the multivalent nature of the MAG–IgM interaction, polylysine polymers of different sizes were substituted with mimetic 2. With the most promising polylysine glycopolymer PL84(mimHNK-1)45 the inhibitory effect on patient sera could be improved by a factor of up to 230,000 per epitope, consequently leading to a low-nanomolar inhibitory potency. Because clinical studies indicate a correlation between the reduction of anti-MAG IgM levels and clinical improvement, an immunological surrogate mouse model for anti-MAG neuropathy producing high levels of anti-MAG IgM was developed. The observed efficient removal of these antibodies with the glycopolymer PL84(mimHNK-1)45 represents an important step toward an antigen-specific therapy for anti-MAG neuropathy. ”
I plan on asking my neurologist how long from testing on mice to Medicare approval. Hope it is not too many years.
August 10, 2017 at 2:23 am
Thank you 5523Cats for this interesting information
August 12, 2017 at 3:06 am
Perhaps an orphan medicinal product in Europa
Do you know about Polyphenyl?
August 14, 2017 at 5:23 pm
Dear Matou and 5523Cats,
This information about the work at the University of Basel regarding the synthetic carbohydrate treatment for anti-MAG is very exciting! I have sent the link to my neurologist as well to see what he thinks. I will keep you posted on feedback I get. Also, I shared that orphan drug information with them. I am not a chemist so am not sure if the orphan drug information is the same drug that was used in the Basel study but will also let you know if I find out. Take care everyone!
August 15, 2017 at 4:27 am
Dear Heidi and dear 5523Cats,
I apologize if my english is very rough, i am French and i live near Paris.
This is interesting information about current research.However, the outcome of current studies does not presage marketing authorisation for the time being, and i have not heard for therapeutic trial.
I see my neurologist next week,I’ll talk to her, in september in Marseille, a seminar will address in part the anti-mag neuropathies.
I wish you the best and take care of yourself.
August 16, 2017 at 12:25 pm
Dear Heidi & Matou~
I have forwarded the information to my neurologist. When I hear anything, I will let you know.
It might be a while though.
August 22, 2017 at 1:54 pm
I share this information on July 2017 about the orphan drug:
Matou from France
August 24, 2017 at 1:06 pm
Hi 5523Cats and Matou,
The company that makes that orphan drug is called Polyneuron. I actually contacted the lead authors of the article that we have been talking about, http://www.pnas.org/content/114/18/E3689. They told me to monitor Polyneuron’s website for info on a clinical trial. They said most likely a trial will begin late 2018-2019 and would consist of folks in Switzerland (Matou you might be close enough to be considered in the early trial since you are in France). I just finished my second treatment (4 weekly infusions) of Rituxan. I didn’t see any improvement on my first treatment 6 months ago but thought I’d give it another chance as long as insurance would cover it again. I have found a few more anti-MAG folks from the USA and have sent them info on how to join this forum so we may have more people to share with. Take good care everyone!
August 25, 2017 at 5:29 am
Thank you Heidi, for this information about Polyneuron, it will be a good news for us if the orphan drug will be the good treatment.
I saw my neurologist and he offered me rituximab,i prefer to wait to try this molecule, i mainly tingling in feet, conduction speeds slowed and loss of sensitivity.I have fasciculations in the feet, i walk slowy about 12000 steps a day, i am rather tired.
I hope that you will have Heidi improvements after your second treatment and not too adverse effects.
Take good care everyone!
August 28, 2017 at 11:36 am
Dear Heidi & Matou,
I heard back from my neurologist and he indicated that “from testing on mice to FDA approval can be up to a 10 year process.” The Polyneuron seems to be the most promising treatment. I have numbness in my feet and fingertips. Having to get rid of my shoes made me very sad, I wear mostly athletic shoes now. The hand tremors are actually the most troublesome.
November 10, 2017 at 7:45 am
I hope you are fine and well
You can join this group on facebook about anti mag neuropathy if you want:
November 10, 2017 at 3:23 pm
I certainly will do this.
November 12, 2017 at 8:05 pm
Is that Facebook page only for French speakers?
December 10, 2017 at 9:12 am
This is Micky from Australia I was diagnosed with Anti mag 2 years ago and had 6 cycles of cyclophosimide which worked very well I had almost 12 quality months before my condition returned
I then had IVIG which did nothing so from my experience avoid this treatment insist on Rituximab because my condition got very bad during IVIG to the point I had to resign from work and had 6 months off work
I have had 2 infusions of Rituximab 4 months ago and my condition has improved not as good as the cyclophosimide but I am able to walk and my balance is OK not great but ok
I am now back at work which is a big relief but I worry my condition will return so hope my current treatment continues to work for me
My neurologist advised me that I can get Rituximab for the rest of my life so I am hoping that it works for me and I may need only 1 or two infusions a year to maintain my condition
My advice is research as much as you can and take charge of your situation because many of the treating doctors have little or no experience treating anti mag so I tell them what I want and I dont just go with the flow.
I am hoping that the human version of Rituximab is trailed for Antimag as it might offer some hope for us suffering from the condition
Exercise is important in the management of the condition as well
Good luck everyone and remember one foot in front of the other is a step in the right direction
December 13, 2017 at 3:01 pm
After 1 year of mostly unsuccessful IVIG treatments, I am biting the bullet and am going to try rituximab.
December 13, 2017 at 8:28 pm
I also have anti-MAG neuropathy (diagnosed about 2 years ago-much the same as yours). I have been on this forum for about a year. I started my treatment journey with steroids that did nothing. Also 6 months of IVIG infusions monthly. That didn’t do anything either and I felt my disease progress throughout these treatments. I had Rituximab last February and again this August. There has been a definite modest improvement-not earth shattering as I still need a cane and wear braces for foot drop-however I do feel more stable, my endurance is better and I am grateful that it has stopped the progression for the time being. I intend to have another round in Feb. of this year and I guess I’ll keep going at this pace of treatments as long as it keeps me stable and hope for a bit more improvement. There is so little information about treatment for anti-MAG but I do feel that the Rituximab is a reasonable route to go. I tolerated it extremely well-no side effects whatsoever so that is good. Take care and keep us posted on your situation.
Heidi (from Massachusetts, USA)
December 13, 2017 at 10:07 pm
Information about MAG states that it is “slowly progressing”. What is your experience?
December 14, 2017 at 1:45 pm
As mentioned previously, my official diagnosis was 2 years ago, but I am positive it started 2 years prior. I do not know my “level”, but it must be quite low, as the progression has not disabled me to any great extent, as of yet, and I am learning to cope. I am doing PT that consists of light treatment, ultrasound, massage and a few exercises. 3 days a week I workout with a trainer with focus on foot and leg strength. On 3 other days, I ride my bicycle 10 miles per, I take 1 day off each week. Daily use of an inexpensive foot massager is also part of my regime. My neurologist has me on a very low dose of amitriptyline, 1 tablet at bedtime. The hand tremors and numbness is something that I am not doing any therapy for at this time.
December 14, 2017 at 2:05 pm
Thanks Cat for the info.
December 15, 2017 at 5:42 pm
Has anyone had Rituxan -Rituximab treatment for MAG covered by Medicare?
December 16, 2017 at 9:09 pm
I’m on Medicare and all my 720MG Rituxan treatments qualified to be billed under Part B medical, where my cost share is the lowest with my “Plan N Supplement”. If billed under Part D prescription drugs … good luck, you could go bankrupt paying for it at around $17K per each 3-4 hour treatment!
December 16, 2017 at 11:48 am
I’m not sure if your question about “slowly progressing” was for me but I’ll answer. Unlike Cats, my disease seemed to come out of the blue with minor tingling in hands and feet progressing to more numbness and tingling and then affecting my balance and mobility. This all took about two years to peak. I do think the Rituximab treatment has been the only thing so far to slow (and seems in my case to have stopped) the progression. I have insurance through my work so I’m not sure about Medicare coverage but I’d imagine it would. Your doctor will be your best advocate. Take good care!
December 16, 2017 at 10:55 pm
Heidi and Jim
Thanks for answering my questions. I was told that medicare refused to provide a “PA” because MAG did not qualify for Rituxan treatment and there is no appeal process for medicare. I think they are pursuing the Part D prescription drugs. I have a Blue Cross Blue Shield Supplement (F).
December 19, 2017 at 5:50 pm
This is what I think I know. IVIG dilutes the concentration of the anti-Mag antibody but for some reason it is not effective for treating MAG. I have been to a total of 4 neurologists and I currently think I have one of the best. I was initially told by a doctor at Wash U Neuromuscular center to try Rituxan sooner than later if IVIG doesn’t work. He said that I would know whether it was working because my symptoms would decrease. My second Austin doctor kept telling me that IVIG was working and I knew it wasn’t but he did not listen to me. My first Austin doctor did not want to deal with a MAG patient.
The longer a MAG patient waits, the more of the myelin shealth is destroyed. The anti mag antibody creates “moth holes” in the myelin shealth. If there is axonal damage, it is very difficult to reverse. Theoretically, myelin shealth damage can be reversed if antibody production can be controlled.
HAS ANYONE TRIED A VIBRATION PLATE TO IMPROVE FUNCTION??
December 20, 2017 at 8:55 pm
Your overview of anti-MAG treatment was helpful. I didn’t notice any improvement on IVIG either and I did it for 6 months. It makes sense that the sooner the antibodies can be stabilized or decreased the better. I haven’t tried vibration as a treatment and in what I have read it hasn’t been mentioned. Did you find some information about it’s efficacy? Thanks for your information.
December 20, 2017 at 10:35 pm
Pursuing insurance coverage. This is what I was told today. Rixtuxan is an “off label” drug for MAG and Medicare Part B does not cover off label use so you have to seek coverage under Medicare Part D.
And if Your drug plan refuses to cover Rituxan treatment, then the drug company will be contacted to seek whether they will lower the price.
Jim – how did you get Medicare coverage? Heidi thanks for answering.
BACK TO THE VIBRATION PLATE. NOTHING I READ SAID IT WOULD HELP. THE BEST WAS IT MIGHT HELP BUT THERE WERE ALSO DANGERS WITH USING IT.
I keep thinking there is some magic out there that has the potential of helping. I have been in contact with the chemist in Switzerland about their glycoprotein that might bind the bad Mag antibody. He indicated that the mice trials are going well.
December 21, 2017 at 2:10 pm
I did not mention that my trainer has a vibration machine, it is a “PowerPlate,” I do my leg and foot exercises on it during each training session, about 15 minutes total. I would like to buy one, but they are about 5K. Has it helped? There is no way to know for certain. Bottom line, my progression has been quite slow and I am functional at this time.
December 21, 2017 at 2:19 pm
Our local COSTCO has a representative for ZAAZ – Whole Body Vibration – Same principle as Power Plate. Cost is about $2,300. My PT said it might help.
Also, without one’s own nerves simulating muscles maybe this will help keep them stimulated. My PT (who has had experience with a MAG patient) said that it might help if you don’t overdo.
If you live in Austin, TX you can use mine as I think I am going to buy one.
December 27, 2017 at 5:19 pm
This must be the only Anti-MAG forum on the internet. Found another one but the posts ended several years ago. I know this a rare disease but hadn’t realized how rare.
During 2014 my symptoms started with numbness, shooting pains, tingling, etc. in the toes/feet which was misdiagnosed as Plantar Fasciitis and I was given custom-made orthotics and sent to PT. That seemed to help for my daily walks and I used the same orthotics walking inside the house.
But in 2016 during my physical I asked my new doctor (having changed health plans) about the problem since my toes/feet were becoming more numb. He ordered a host of blood tests. Abnormal results were found with igM > 102400 and abnormal light chain tests.
Then off to the neurologist for nerve conduction tests which showed slow nerve conduction in feet and forearms. Neurologist wanted to start me on Rituximab right away. But my primary care doctor vetoed the idea since only my feet were affected and I was still able to walk OK with the orthotics.
In Sept 2017, I returned to my primary care doctor after the anti-MAG started to progress rapidly during the previous 6 months. Now having some numbness in ankles, up to the knees, and all fingers getting numb; balance problems on uneven surfaces and stairs, slower walking, muscles beginning to atrophy below the knees, etc.
The doctor sent me back to Neurology but my Neurologist had just retired and was replaced by a young doctor who had studied Neurology at UCLA and USC. I was impressed…very sharp doctor. After repeating the nerve conduction tests from 2016, she confirmed that nerve velocities had slowed significantly with muscle atrophy; and reflexes, vibration, hot/cold, etc. senses affected.
The neurologist discussed treatment with Rituximab or IVIG. Prior I had done internet research and also contacted Mayo Clinic and found the most promising drug was Rituximab for Anti-MAG.
I also contacted polyneuron.com about their pipeline with an anti-MAG compound but that will be years off for approval. However, Phase II clinical trials will be available to those in the USA in conjunction with a neurologist in California. The response from Polyneuron was very helpful and the researcher said to feel free to contact them for updates and check their website. Thanks to Jim-LA for posting here about Polyneuron! That drug gives anti-MAG folks hope if it works effectively as a “sponge” to capture the bad guy antibodies attacking the Myelin coating, leaving the immune system intact. I shared the article with my neurologist and she was impressed with the drug’s concept and unaware of this potential anti-MAG treatment.
To make a long story even longer, the neurologist recommended a 6-month course of IVIG treatment every 3 weeks, with the first followup after 3 months. Her reasoning was that IVIG is considered “safer” if less effective and benefits shorter-lasting than Rituximab. So If IVIG is ineffective, I can try Rituximab. Had the first IVIG treatment over 2 consecutive days last week.
I will post here about any changes in my symptoms and treatment in the coming weeks. I look forward to “trading” info and experiences with other anti-MAG folks here since apparently we are such a rare breed.
December 27, 2017 at 5:46 pm
I’m glad you found this forum and thanks so much for sharing your information. I had no problems with the IVIG treatments I had (a series of infusions for 6 months). They didn’t seem to help but then again, who knows for sure as it could have slowed progression a bit. I believe my insurance dictated that I needed to do IVIG first before jumping into Rituximab. I’m thinking that there may have been a need to prove a cheaper alternative either effective or not before going to the more expensive Rituximab. BTW….the very first line of treatment I had was high dose steroids which didn’t do anything either. I’ve also been to the Mayo Clinic and Rituximab was their suggestion. I have had two treatments with Rituximab-each 6 months apart. No bad reactions at all and I do feel that it slowed the progression and may have given me a slight improvement. So hard to objectively measure small changes with something like this. You are right that there are so few of us that the most effective treatment hasn’t really been settled on yet. I am also eager to hear when Polyneuron starts trials as I’d be more than willing to sign up! Again, thanks for letting us know your story and best of luck with moving forward.
December 27, 2017 at 6:55 pm
I’m with you. We can all “camp” in line to get spots up front for Polyneuron’s anti-MAG drug Phase II trial in the USA. Phase 1 is scheduled to begin in 2019 only in Europe. So we’ve got a ways to wait for Phase II in the US but I understand they have received “orphan drug” status in Europe so hopefully the FDA will also grant this.
I think you’re right that IVIG is pushed for first line treatment of anti-MAG due to cheaper cost than the more effective Rituximab treatment; but they say it is due to safety concerns. The Hematologist/Oncologist who did my bone marrow biopsy said they have been using Rituximab for many patients with diseases other than Anti-MAG with few side effects and great results. It is good to hear you have had a good experience with Rituximab and seems to have stopped progression and improved your condition a bit. But I suppose first we have to go through a 6 month IVIG regimen to “earn” the more expensive Rituximab. I have read that IVIG helps many forms of CIDP but for anti-MAG the benefits are not proven. Maybe it helps to stop progression? But common sense tells you that if 6 months of IVIG (which is not cheap either) won’t help anti-MAG folks, it would probably save money just to start with Rituximab which requires fewer infusions with much longer lasting benefits than IVIG (if IVIG even helps anti-MAG).
Thanks for your reply and talk to you again! One more thing, below is the email reply from Polyneuron about their potential anti-MAG drug treatment:
Many thanks for your interest in our research and our company. We are
small Swiss Biotech company. Our entire team is highly motivated and
works very hard on the development of PN-1007 as the first treatment for
anti-MAG neuropathy. Nonetheless, there are still many hurdles to
overcome but we are currently on very good track.
We are planning the First-in-Patient Study (Phase I) in Europe in 2019,
but we have planed the phase II in Europe and the US. In California we
currently establishing the contact with a renowned neurologist and a
clinical center, respectively. We are glad to update you with the
progress of the development but it is still a long way towards the
clinical trial. For any further information or updates, feel free to
Pascal Hänggi, PhD
December 27, 2017 at 9:19 pm
Welcome Peter to this “select” group.
I have been on IVIG for over a year. I stopped twice – once for 1.5 months and once for a month to see what would happen. What happened was that the pace of disease accelerated w/o IVIG. I was/am on an every 3 week regime of IVIG as I am trying to get coverage from Medicare for Rituxan, an “off label” use for Mag. Jim – how did you get coverage?
Rituxan has a 30% success rate but I don’t know what parameters determine success.
A different question – Have any of you had your level of Vit. B 12 tested and was it high?
Happy New year to all
December 28, 2017 at 1:07 am
A different question – Have any of you had your level of Vit. B 12 tested and was it high?
Just a CIDP DX, not anti MAG, but my B12 came back low and was put on 1000 mcg daily.
December 28, 2017 at 12:08 pm
Thanks for your feedback on your IVIG treatments. And, thanks for the “welcome” to the group!
That is an important discovery about your personal experience that stopping IVIG infusions resulted in the disease accelerating. At least you know the IVIG infusions are worth the effort and holding things in check. Best of luck getting Rituximab coverage from Medicare. I look forward to your updates.
Has your neurologist performed any follow-up nerve conduction or other tests during the course of your IVIG treatment to quantify whether it has improved or maintained your condition? Your own test of stopping IVIG twice and finding out the diseased progressed is very significant since you “know” your symptoms best. I had my first IVIG infusion last week and the neurologist wants me to return in 3 months for a “follow-up examination.”
To answer your question, during the last 2 years the neurologist tested my B12 twice and it was well within the normal range.
However, I understand low B-12 can contribute to PN and 3 years ago ordered a bottle of pills from a TV ad that claimed would help neuropathy. At the time, only my feet were numb and tingly so I tried it. Turned out its main ingredient was a mega dose of B-12 and most of it was excreted in my urine! (based on the strong odor).
Happy New Year all!!
December 28, 2017 at 1:04 pm
I have had two EMG tests and another scheduled for Jan 4. That is the only objective measurement of the disease progression. I was told that if IVIG is working that you would know quickly -1 or 2 treatments. If you look at charts of success with IVIG, improvement is usually within 3 months. If you have no improvement after 3 months maybe push for Rituxan.
I assume that your initial dose was the double dose(loading dose)as recommended.
I asked about Vit. B 12 because mine is high (serum value) and my theory was that because of MAG it was not being used properly and piling up. High Vit. B 12 can be harmful.
New topic – anyone tried Plasma Exchange to treat MAG?
I was told by several neurologists and other doctors that you are your own best advocate. I think a doctor getting annoyed at your questions is a bad sign. So little is known about this disease.
Also, I thought “slowly progressive” meant one barely noticed it. No so in my case. I have been obsessive about this disease for over a year, trying to learn everything about it. If I can provide any clarity, please let me know.
December 29, 2017 at 1:01 pm
My B12 was in the normal range as well so at this point I only take a multi-vitamin, fish oil and calcium. I don’t do anything in excess right now. I recently got AFO (ankle-foot orthotics) and I am pleasantly surprised by the help they have given me. I do have a bit of “foot drop” on both sides and use a cane. I had an over the counter foot brace but my Dr. urged me to give these a try. I had stalled a bit because I didn’t want anything more attached to my feet to get in the way of what little sensation I have. They are very lightweight and don’t need custom molding so are less expensive. They give me more confidence when walking and at times I’ve left my cane for short travel. Just thought I’d share that in case any of you are in the same situation.
Happy New Year to everyone!
December 29, 2017 at 1:07 pm
Oops! Sorry Ila, forgot to answer your question about plasma exchange. I’ve asked a number of neurologists that same question. Here’s what I get as an answer…plasma exchange may help in the very short run but it is just filtering out your excess antibodies temporarily and is not a very long term solution. Plus, there is a fair risk due to infection as you are literally having your blood taken out, spun and processed and returned (all through large catheters). That said, none of us are the same and our doctors all have slightly differing philosophies. If you have been encouraged to give it a try or want to try it for your own peace of mind then I’d give it a go. Take care!
December 29, 2017 at 3:34 pm
I am interested in your ankle-foot orthotics. Do you have a link or brand name? I am at the point where I will soon need a cane to help my current daily “balancing act” unless the IVIG I just started stops progression. I have some foot drop, and my ankles seem “loose” like the muscles and tendons are atrophied. When I walk on uneven surfaces like loose sand on the beach or uneven dirt, my ankles start to “roll” sideways. Do your ankles “roll” easily also? I have fallen down twice from this. One of the neurologists suggested leg braces from the knees to ankles. So your post about your ankle-foot orthotics is timely! Thanks for any info you can provide.
I also take a multi vitamin and fish oil. I have been taking glucosamine for 15 years after I had ankle surgery. I have no idea if it helps anti-MAGers to maintain muscles and tendons but who knows. I asked my neurologist about preventing muscle atrophy and was told if nerves are not conducting normal electrical impulses to the muscles, that is like a motor not getting enough electricity so it won’t work properly.
I agree with you on Ila’s question about the plasma exchanges. I bet this works to filter out the bad antibodies but it would need to be repeated indefinitely and has risks, and is no doubt costly. I just saw the first bill for my IVIG and so happy I have a relatively low annual maximum “out of pocket” expense for my insurance.
December 29, 2017 at 3:56 pm
Thanks for your feedback on IVIG. No, I did not receive a “double” loading dose of IVIG at my first treatment last week. Also, I received the 5% IVIG instead of the 10% IVIG that I have read online that is used for CIDP. The nurse told me the 5% is “safer” to prevent side effects. But now I am wondering if I did not get the “double” loading dose and only getting 5% IVIG if I am getting the proper “therapeutic” dose required to help or stabilize anti-MAG?
I am still hopeful for Rituximab and will push for it if the IVIG does not help or stabilize things by my 3 month followup with the neurologist. I assume she will give me the EMG test as you mentioned you have received.
You are SO right about being your own best advocate since anti-MAG is so rare and just by doing online research, you may know more about anti-MAG than most doctors. My first primary care doctor was annoyed when I mentioned my numb toes and feet at my physical. He walked out saying “You need to make another appointment. I don’t have anymore time and have other patients.” And, this was at my physical! So immediately I changed to another doctor in the same office and told him why. Then to his credit, he ordered blood tests that helped diagnose anti-MAG Neuropathy. He seemed excited when he called me with the test results since he said it was a rare disease in his experience. So yes, if a doctor is annoyed at your questions, find a new one!
January 1, 2018 at 6:12 pm
I also fell a number of times due to catching my toe due to foot drop. I started using a cane and picking my feet up fairly high which used a lot of energy. I had a simple over the counter brace I got on Amazon to help on my most involved side but still needed to walk very carefully and thoughtfully. My ankles do feel a bit more “wobbly” just as you describe and if I walk on uneven surfaces I really need to stay focused on my feet. The orthotic brace I got is made by a company called Ottobock and is called “WalkOn flex” model 28U22. It does help with the foot drop quite a bit and walking is less taxing. It doesn’t necessarily give me more ankle support but my ankles actually seem a bit more stable (perhaps a good benefit of having Rituximab treatment?). In any event, I was able to try a few different types at my orthotists clinic and these were the lightest and most comfortable. I hope you could try some different types and find one that works for you.
January 1, 2018 at 9:39 pm
Thanks for the info about your ankle/foot orthotics. I checked out the Ottobock website and the Walk on Flex model 28U22 seems to be a nice design for light to moderate foot drop. By the design, it looks to me like it could help support weak ankles from rolling sideways on uneven surfaces, too. But like you said, the Rituximab could be helping too! I read that it takes months for myelin and nerve function to regenerate if you get those benefits from the infusions which Rituximab has been found to provide.
I just started IVIG and going for round #2 next week but was told by the doctor to wait 3 months for any improvement (if it occurs). So I guess I will wait until my follow up appointment and ask about the ankle/foot orthotics you have. They mentioned some “knee to foot” orthotics but those seemed like overkill for my current condition. But I understand what you mean about needing to “stay focused” on your feet on uneven surfaces. I have a lot of trouble balancing and not rolling my ankles while walking on dry sand on the beach where I walk a lot, but walking on the wet sand along the water is no problem.
When did you have your last Rituximab infusion? I read a study online that found maximum improvement for anti-MAG cases was not reached for a median time of 9 months after the Rituximab infusion.
January 4, 2018 at 2:16 pm
Hi Peter (and group),
I had my last infusion in August 2017….I had my first infusion in February of 2017. They are spreading them out 6 months apart. I would say that your source may be correct in terms of taking about 9 months to notice a change. It seems to me that I felt improvement (slightly better balance, less reliance on cane all the time, more strength in my legs) around October 2017 which would be about 8 months after my first treatment in Aug. One thing that I’ve had difficulty adjusting to is the slow pace of noticing change. My dr. appts. are about 3 to 4 months apart which feels like a lifetime when you live with it every day. I did see Dr. Kenneth Gorson this fall who is associated with St. Elizabeth’s Hospital out here in the Boston area. He suggested a more compressed Rituximab dosage (every 3 months) so I’m pondering that. My next Rituximab treatment should be this February. I’m not sure if I will get approved for a more compressed schedule but will let the group know how it goes either way. Stay warm everyone!
January 5, 2018 at 9:03 pm
This is my first reply. Have had every treatment. Improvement only with plasma pheresis and cytoxan. Have anti mag and started 4 weekly Rituxan treatments ending in October, 2017. Hematologist wants me to have one treatment every 90 days. Was improving so much and trying to get walking without cane on track working up to mile. Broke bone in foot and sprained other foot in accident. Big set back, but feet healed and trying to get back and get next treatment.
Want to hear from anyone who has this. Was a former runner and this has been a challenge each day. Also a victim of age and on medicare. 😊
January 5, 2018 at 10:11 pm
Sundayrush Welcome to the Forum. I am happy to hear that you are on the mend. So little is known about Anti-mag and what effectively treats it. This forum might be as good a source of information as research data.
I am going to do a double header with Rituxan and plasma exchange as soon as I can get the insurance companies on board (I hope).
Has everyone had a flu shot? My anti mag symptoms started about 6 weeks after I received the specially formulated flu shot for seniors in November of 2015 and I have been reluctant to get vaccinated again.
January 6, 2018 at 2:04 pm
Thank you. I have a long way to go. Am thrilled to share and learn about anti mag.
January 6, 2018 at 1:59 pm
Good to hear the Rituximab is improving your condition!!
Have you had a followup EMG and/or nerve conduction test since you’ve been on Rituximab so your neorologist can quantify your improvement? But I personally believe we can best tell if a treatment is helping us (i.e. are able to stop using a cane).
But you are SO right about the slow pace of noticing change. My neurologist warned me not to expect quick results with treatment. I guess patience is a virtual with this disease. 😉
January 6, 2018 at 2:15 pm
Welcome to the forum! We are a small group since anti-MAG is so rare, but I waa glad to have found this group to share experiences, research, ideas.
It’s great to hear your improvement with Rituximab and I am sure you will continue your improvement now that your feet have healed.
Do you know whether your foot injuries were related to anti-MAG?
During the past year I may have had 2 stress fractures in my feet based on swelling and pain. At the time I was probably walking TOO much. My feet are numb but also the muscles have atrophied and I can barely move my toes.
My theory is that with muscle atrophy / motor function loss as a common symptom of anti-MAG in addition to sensory loss, the feet no longer have the normal support from muscles, tendons, etc. so the bones are under more stress. Two years ago I received custom foot orthotics and this has helped a lot and I wear them indoors and outdoors.
January 6, 2018 at 2:22 pm
To Ile, Heidi, Peter, etc. Thank you for welcoming me. Some of you wanted to know about plasma exchange. Had central Cath and it helped stabilize progression, but wound up hospitalized twice with serious infections. My neurologist then put me on cytoxan. That also stabilize me. For tracking my progress I used walking on a track. My husband recorded and graphed all of my progress during this time. We took it to our neurologist so he could see progress or regression. A few years after the cytoxan my times on the track went down. Neurologist did not want to put me on cytoxan again and that’s when he decided that Rituxan would be the best and that it was a promising treatment for anti mag. And presently waiting to hear if Insurance approved it. I am going to request a nerve conduction study since it has been years since I’ve had one. Good idea from Peter.
January 6, 2018 at 2:58 pm
I’m just figuring out how to read these threads and saw your question about foot fracture.like you I had stress fracture last year. It came out of the blue. This year stress fracture occurred in another bone in same foot, when I was walking more and started going to the gym. Tread mill took off at high speed and catapulted me against a wall. Tendon and sprain in the other foot.
I don’t know if weak bones that fracture are part of this. Do you have Mgus? Is there a connection?
January 6, 2018 at 3:07 pm
The one thing that I noticed since having Rituxan is that I can move my toes and feel muscle move in my calf. That was so exciting for me. In cold right now and toes don’t move as well. Hope this helps others who want to try Rituxan.
January 6, 2018 at 4:05 pm
That must be exciting to see improvement of your symptoms on Rituximab!! I just started IVIG once every 3 weeks but have read that IVIG usually only stabilizes anti-MAG symptoms IF it works, so on my followup with the neurologist in 3 months I am going to push for Rituximab since from my online research Rituximab actually IMPROVES the symptoms as you are experiencing with more toe movement and recovering calf muscles. That must help your walking a lot!
There is some misinformation online about anti-MAG such as it usually only affects sensory function such as causing numbness; loss of vibration, reflexes, hot/cold, etc. senses, etc. But what I am reading on this forum is that is causes significant loss of motor function, too. But with this disease being so rare, it must be hard to find enough participants and get enough data for a statistically significant study.
BTW, in case you haven’t read about this, Polyneuron Pharmaceuticals in Switzerland http://polyneuron.com/ has in their pipeline an anti-MAG treatment that will act as a “sponge” to soak up the bad anti-MAG antibodies without affecting the immune system. Phase 1 trials should begin in 2019. I am considering moving to Switzerland for a few years to participate if they would accept me in the trial. Phase 2 trial will include the USA in conjunction with a neurologist and medical center in California, but that may be 3, 4 years away. But that is more hope for a better treatment.
January 6, 2018 at 4:24 pm
To answer your question, I was diagnosed with MGUS that was confirmed with a bone marrow biopsy, and blood tests that showed igM > 102,400. My neurologist said that was “through the roof” and beyond the maximum reading of the test in that particular lab.
I have not come across information online that states that anti-MAG can lead to stress fractures or other problems in the feet. But your experience sounds very similar to mine. It seems like if muscles in the feet, calfs, etc. atrophy, there will be increasingly more weight on the many bones in your feet and put them under more stress. Just like with our balance problems, as muscles atrophy their are fewer muscles to automatically control our body movements as we move in different positions and walk. Then on top of that the brain’s nerve impulses are no longer conducted at the proper velocity to normally “fire” the muscles so they slowly atrophy.
January 6, 2018 at 5:54 pm
This summary is interesting reading.
January 7, 2018 at 11:23 am
Thank you for Polyneuron link. Will ask my Neuro and hematologist about it.
Totally agree with your assessment of atrophy, muscle, etc…
Ila, thank you for links. I’ll forward anything I find to group.
January 7, 2018 at 2:57 pm
The Polyneuron link was initially posted here by Jim-LA and after emailing the company directly about the anti-MAG treatment in their pipeline, I made a copy about the drug from polyneuron’s website and gave it to my neurologist who had not heard about it but stated that the concept of the treatment to act as a “sponge” to collect the anti-MAG antibodies sounded VERY promising. Of course, Polyneuron is still years away from getting the drug to market IF it works as they hope.
Ila’s link is an excellent summary of treatments for anti-MAG! Thanks for posting. Several months ago I spent all day searching Google for variants of “Anti-MAG Rituxan” “Anti-MAG Rituximab” etc. and reading all the studies on anti-MAG treatments I could find. The current #1 treatment appears to be Rituxan/Rituximab. IVIG was found to help some anti-MAG patients stabilize or slow progression, but not much disussion about improving the symptoms and the required 3-week infusion intervals are not very practical (as I am finding with my current IVIG treatment in which I get IVIG infusions every three weeks on two consecutive days of 5-6 hours each). But Rituximab seems to improve anti-MAG symptoms for patients and is effective on a higher % of anti-MAG patients than IVIG and has a much longer time interval between infusions than IVIG – plus it works better.
After my online research, I emailed four MGUS experts/researchers at The Mayo Clinic. Although they all correctly stated they could not make a diagnosis through email and all invited me to The Mayo Clinic for a second opinion, ALL four doctors agreed that if I was diagnosed with anti-MAG neuropathy, Rituxan/Rituximab is an effective treatment, with one doctor also stating IVIG is sometimes used. So their input confirmed my “Google research.”
Now I’m really looking forward to the clinical trials of Polyneuron’s anti-MAG drug or for someone in this forum to post another “wonder” drug.
January 7, 2018 at 5:06 pm
Other info – The usual dosage for IVIG is 1 gram per Kilogram of body weight every three weeks.
Rituxan for anti Mag treatment is an off label use for the drug. Check with your insurance company to figure out whether you can get coverage.
January 7, 2018 at 6:43 pm
I get 95 grams based on my weight for 6’ 4” but the neurologist ordered 1 hour of saline before the IVIG and a drip rate of 200 ml per hour while the nurse says 95% of her patients are infused at 300 ml per hour. She says the pre-saline drip and slower infusion rate are “safer”
So I need to sit in the chair for 6 hours on each of two consecutive days every 3 weeks.
Anyone get the IVIG infusion done in just one day?
January 7, 2018 at 8:35 pm
So I need to sit in the chair for 6 hours on each of two consecutive days every 3 weeks.
Anyone get the IVIG infusion done in just one day?
CIDP DX, not Anti-MAG. I do not get saline, just the IVIG with Tylenlol and Benadryl premeds. Rate usually starts around 115 and finishes around 350.
When I was getting around 100 gms that was being done in one day. Since we have upped the dosage I’m now getting IG over 2 days.
January 7, 2018 at 10:08 pm
This gives a dosing schedule for a 10% IVIG solution
January 8, 2018 at 5:11 pm
Hi everyone and welcome Sundayrush!!
Sorry I was away from email for a few days…after reading all the great information that everyone wrote I wanted to add a few thought/comments/answers to questions. Since I was diagnosed with anti-MAG over two years ago, my neurologist has warned me against a flu shot due to possible triggering of Guillaine-Barre. I had only sporadically gotten it in previous years so I’m not upset about skipping it. I don’t know of any data however that says that folks with CIDP or anti-MAG are more susceptible to GB after inoculation so if you feel you should get it to protect your health, I’d go ahead.
I also feel that there is some muscle weakness associated with this disease even though I’ve read and been told that there shouldn’t be marked weakness with anti-MAG. I don’t know if anti-MAG contributes to muscle weakness or if muscle weakness is a result of anti-MAG but I definitely felt decreased strength. BTW…that seems to have improved a bit on Rituximab. Especially going up/down stairs. I have not had any stress fractures but have had two other fractures due to falls due to my condition (ankle and fibula)-that’s when I started using a cane. I do feel there is something strange that happens in our ligaments-could be a weakening or maybe sensory related that just causes ligaments to feel like rubber bands!
Also, of interest, I am from the Midwest originally (live near Boston now) and have a relative at Mayo. I went there for a full work-up after my initial dx and they confirmed my dx of anti-MAG and their recommendation was Rituximab. I also went to Northwestern (Chicago) where Dr. Burt and Dr. Allen conduct stem cell transplants for people with Multiple Sclerosis and CIDP (I had run into a local person with CIDP in Boston who had good results with a stem cell transplant-she encouraged me to go). They did a thorough assessment and told me that yes, I have anti-MAG (no surprise there) but they also said that they have not had positive results from their stem cell transplant protocol for anti-MAG (they had only done a handful of people with anti-MAG and no one got better). They aren’t sure why it wouldn’t work but it doesn’t at least with how they are doing it. I was grateful for their honesty as it’s a rigorous protocol involving a significant health risk.
Sorry for the length of this post but I do appreciate everyone else’s experiences and hope that I can contribute to the group with what I’ve experienced so far!
Take care everyone,
January 8, 2018 at 6:40 pm
I was curious whether I could find out how many people have this disease and I found this info from across the sea.
Michael Lunn is British neurologist.
My neurologist insisted that I get a flu shot.
This is really a disease with “alternative” facts and more questions than answers including should this disease be treated.
January 8, 2018 at 10:15 pm
That is an excellent article describing the common symptoms of anti-MAG neuropathy. But since anti-MAG neuropathy is so rare, I wonder how the neurologist collected enough data about the disease progression in people with anti-MAG neuropathy to reach a statistically significant conclusion that this disease rarely leads to disability or needs treatment other than needing a cane and/or foot orthotics after many years. I read another paper that stated 30% become disabled after many years (i.e., 10 or more), and another that stated 10% eventually become disabled as in wheelchairs.
Here is a paper about someone with anti-MAG neuropathy with significant muscle atrophy and weakness. But it only refers to one patient! href=”https://www.ncbi.nlm.nih.gov/pubmed/20665518″>
You are probably right about “alternative facts” written about this disease. I don’t think anti-MAG neuropathy with igM protein levels should be categorized along with the other MGUS types with high igG, igA or igD protein levels which normally DO NOT exhibit any symptoms but can eventually turn into a blood cancer with about a 1% chance per year.
But as we know, the igM variation of MGUS does have physical symptoms. But maybe the extent of these symptoms depends on the levels of igM protein in a patient with anti-MAG neuropathy? In the MYELIN ASSOCIATED GLYCOPROTEIN ANTIBODY test I was given, < 1600 igM titers is normal. igM 1600-3200 is moderately elevated. igM > 6400 is highly elevated. The result on my test was igM > 102400 or 64 times greater than the considered “normal” number of igM. I have seen references online of people even with one million igM titers. I imagine these nasty anti-MAG antibodies like thousands of “PAC MEN” working 24/7 inside our legs and arms to destroy myelin coating on nerves, so it seems like someone with one million igM titers would have a much quicker progression and worsening physical symptoms than someone with 3200 igM titers.
What my neurologist has told me, each case of anti-MAG neuropathy is unique and has different levels of severity and rates of progression, or it can remain relatively stable for a long time. So I think it is a case by case basis whether a treatment such as Rituximab or IVIG is needed. For the first 4 years I got by with only custom orthotics in my shoes and was able to live with numb toes and partially numb feet, but during the last year the anti-MAG progression has seemed to shift into “high gear.” So that is why I decided to go in for treatment in the hopes that it stops the progression or even improves somewhat.
January 8, 2018 at 11:02 pm
Thanks for sharing your experiences. No worries about the long post, at least from me (who tends to be long-winded LOL).
I have never heard about the connection of flu shots with anti-MAG or that we should avoid them once we have been diagnosed with anti-MAG. At my healthcare provider, a nurse sits at a table in the hallway offering free flu shots and nobody ever asks whether you have an autoimmune disease or not. I got the flu shot last year and still caught the flu over Christmas holidays. I hadn’t realized they are only about 65% effective. So maybe I will heed your warning and just skip the flu shot next year.
So cool about getting a second opinion from Mayo Clinic about your anti-MAG. They actually coined the term “MGUS” and in 2006 performed a clinical trial that showed the efficacy for treatment of anti-MAG with Rituxan/Rituximab.
As far as your comments on muscle weakness, I saw a graph in a study showing the strengthening of ankles and knees after Rituxan/Rituximab treatment for anti-MAG. My neurologist said that when the nerve velocity slows down enough due to anti-MAG antibodies damaging the myelin coating, the muscles no longer get a sufficient “charge” to contract, so they begin to atrophy and weaken. Two years ago I could walk up or down stairs (like at the airport) taking 2 stairs at a time and without touching a hand rail. Now I can’t go up or down stairs without holding the hand rail (or wall) and my legs feel very weak and rubbery. And I am pretty sure it is not just old age!
January 10, 2018 at 4:01 pm
Article on anti mag from study done at Penn State Hershey recommends Rituxan for positive anti mag. Why doesn’t Medicare approve, but other insurance covers it?
Was not able to forward article, but it is from Annals of Hematology June 2015 Volume 94 Issue 6 Pages 1011-1016
Hope it helps.
January 10, 2018 at 7:57 pm
Below is the text from the article referenced by Sundayrush. Thanks for posting but I hope someone can explain why Medicare doesn’t approve or if they have received Rituxan through Medicare how you got it approved?
Annals of Hematology
June 2015, Volume 94, Issue 6, pp 1011–1016
IgM MGUS associated with anti-MAG neuropathy: a single institution experience
Authors and affiliations
Giampaolo TalamoEmail authorMuhammad A. MirManoj K. PandeyJeffrey K. SivikDivisha Raheja
Anti-MAG neuropathy is a very rare form of acquired polyneuropathy associated with IgM monoclonal gammopathy of undetermined significance (MGUS). We conducted a retrospective review of 194 consecutive MGUS patients seen at the Penn State Hershey Cancer Institute. We identified six patients among 37 (16 %) with IgM MGUS with anti-MAG neuropathy. Interestingly, an additional patient had anti-MAG neuropathy without MGUS. Common clinical manifestations were numbness and paresthesias of the extremities and gait imbalance. All four patients treated with rituximab and none of the three untreated ones had a subjective improvement of their symptoms. We conclude that all patients with IgM MGUS and neuropathy should be screened for anti-MAG antibodies and, if positive, they should be offered treatment with rituximab.
January 10, 2018 at 10:51 pm
Thanks for the article.
It is very troubling that Medicare doesn’t cover the use of Rituxan for treating MAG when it is the only drug that has any success in stopping the progression. My anti-MAG titre is over 100,000.
It is not covered by Medicare because Rituxan is not listed in something called the compendium for the treatment of MAG. Using Rituxan is an “off label” for MAG. Unlike IVIG infusions covered under Medicare part B, the use of Rituxan for MAG has the potential (if one is successful with the appeal process – both my initial appeal and subsequent appeal have been denied) of being covered under Medicare Part D.
In one of the prior posts, Jim stated that he was covered by Medicare Part B. I asked for additional info but haven’t heard further. Jim, please share your secret.
I find it very difficult to deal with this insidious disease and do not welcome the additional stress in attempting to obtain medicare coverage.
January 11, 2018 at 11:23 pm
Link to referenced summary and article purchase info
January 12, 2018 at 5:30 am
When i share the information about Polyneuron on this forum , we must be patient for the orphan drug, it’s very controlled : http://ec.europa.eu/health/documents/community-register/html/o1893.htm
Another information for you
My control EMG lasted a good hour at the Reference Center for Rare Neuropathies at the Kremlin Bicêtre Hospital.
Performed on the four limbs with this time the two techniques on some nerves on the surface and invasive (needles), I wonder about the quality and the reliability of this examination for the follow-up of the anti-Mag neuropathy. I see the neurologist at the end of February for the results.
This review gives me the opportunity to post two links about the QTRAC method that would be much more appropriate for tracking. I can not get an answer from the Adolphe de Rothschild Ophthalmological Foundation that tests this method.
Have you heard of it?
Matou from France
January 12, 2018 at 5:34 am
The link about Kusajili:
January 14, 2018 at 6:23 am
A very very interesting link about the international workshop in the Netherlands on February 2017
You must absolutely share these informations with your doctor or medical team
Matou from France
January 14, 2018 at 5:23 pm
Thanks for posting this information for us.
Do you plan to apply to participate in Polyneuron’s “Phase 1” clinical trial for their anti-MAG drug? I emailed the company and was told it would start in 2019 but only for Europe. Then “Phase II” clinical trial would also include the USA.
But if Polyneuron would accept me for Phase 1 participation, I would be willing to temporarily move to Switzerland in 2019. I have dual citizenship for the USA and a country in the EU. I plan to email Polyneuron again to find out requirements for enrolling in Phase 1.
January 14, 2018 at 5:36 pm
Thanks for the post about the anti-MAG international workshop. That is great news that there is a group studying this rare, misunderstood, and hard to treat disease.
Do you know how we can register with the IMAGiNe study registry? The article states it is open to all centers but I didn’t find any contact information and didn’t find anything in a Google search. Maybe we need to email one of the workshop participants in our own country.
January 22, 2018 at 7:29 am
Hi Peter and everybody,
Polyneuron and the IMAGiNe study are in contact with various hospitals and reffenral centers of rare diseases in Europe and in the United States.
Your doctors will certainly be contactedso that you can be part of the cohort of patients according to certain requirements.
I enclose a very interesting link of Dalakas of January 15, 2018 , wich discusses new treatments to come and humanized monoclonal antibodies Ocrevus.
Take care Matou from France
January 22, 2018 at 7:44 am
and if you want “my” small facebook group about neuropathy anti mag
January 23, 2018 at 9:38 am
This information to follow
The Obinutuzumab (GAZYVA), a Potent Anti-B Cell Agent, in the Treatment of Rituximab-Unresponsive IgM Anti-Myelin-Associated-Glycoprotein (MAG)-Mediated-Neuropathy will be submitte to the American Academy of Neurology annual meeting April 2018
January 26, 2018 at 2:17 pm
Thanks for the info on the Anti-MAG Facebook page and other links to the Anti-MAG studies and potential treatments. With Rituximab, Obinutuzumab and the Polyneuron drug, we have more hope for an effective treatment! I joined the Facebook group and asked how we can sign up for the IMAGINE study.
Currently, I have been receiving IVIG infusions for 6 weeks. Although there have not been many good results reported on the Internet with IVIG treatment for people with anti-MAG neuropathy, during the last 1-2 weeks I notice my walking is faster and I can walk fast enough so I don’t look like an “old man.” Maybe balance is a bit better, too. But the neurologist said 6 months of IVIG treatment is needed to decide how much or if IVIG will help. I will post my progress here.
January 27, 2018 at 4:17 am
I am Christophe the person in France who opened an anti mag group on Facebook, my username here is Matou
I am very pleased that the ivig gives you a better self-evident, it is the first intention of treatment for the forms of neuropathies anti mag very slow in their progression
On the facebook group you will find in the files a guideline on the treatments, it is the last leaflet of JM Vallat
I also had 4 years ago two cures on a week of ivig with a better being, I stopped because I made an allergic reaction.
all the best for everybody
February 5, 2018 at 2:10 pm
You said IVIG treatments were helping you but you stopped 4 years ago because of an allergic reaction. My neurologist prescribed the IVIG at a slow 200 ml / hour rate. The nurse at the hospital says almost all their IVIG patients have a 300 ml / hour rate. I also get a 1000 ml bag of saline for one hour before the IVIG. The nurse said the slow 200 ml / hr IVIG rate and pre-saline for one hour may help prevent allergic reactions.
What rate did you have for your IVIG treatments?
Has your condition remained stable or slowly progressed since you stopped the IVIG 4 years ago?
I have noticed after 6 – 7 weeks of IVIG I can walk faster. I did not expect much improvement from IVIG treatment but my neurologist prescribed 6 months of IVIG since improvement can be very slow. I think you are right that IVIG is usually the first line of treatment, probably followed by Rituximab.
We can hope that the Polyneuron.com anti-MAG drug will be a much better treatment but the clinical trials will take a number of years.
February 10, 2018 at 8:30 am
I was told a fact that add to my understanding of Anti-Mag. The Anti-Mag antibodies can be generated by different lines of cells. There is no test specific enough to identify what cells are generating Anti-Mag antibodies but if the antibodies are generated by C20 cells, then Rituxan can be an effective treatment.
Speaking of Rituxan, I have been denied coverage by medicare Part D thru 3 appeals and am now at the administrative judge level.
Based on an authoritative article http://www.medicareadvocacy.org/cma-report-medicare-coverage-for-off-label-drug-use/ has to be appealed under Part D of Medicare.
In Dec. 2017 Jim LA wrote “I’m on Medicare and all my 720MG Rituxan treatments qualified to be billed under Part B medical, where my cost share is the lowest with my “Plan N Supplement”.
Jim, please share the secret of your success with me.
February 11, 2018 at 5:14 am
I do not remember the rate of flow per hour of ivig treatment, but it was very slow.
I was hospitalized Monday to Friday night, allergists have not made the link between skin allergy and ivig.
Although this is rather common.
I felt an improvement that allowed me to resume the race on foot.
For about a year the disease progresses slowly to the limbs my conduction velocities and sensitivity are worse at the last emg.
I’m actually walking less quickly and I’m less sure on my feet
Ivig are in the front line when anti-mag neuropathy is not too severe, immunosuppressive drugs are second-line.
Take care of yourself
February 12, 2018 at 4:55 pm
That is interesting about the C20 cells. That probably explains why Rituxan works for some people but not everyone.
I read on the United Health Care website that Rituxan is not approved for anti-MAG neuropathy through Medicare since there have been no clinical trials that have proven it is effective. But we know it IS effective by the smaller trials that have not involved a large enough number of patients to make the trial results statistically significant. It must be frustrating for you and others who have been helped by Rituxan but Medicare won’t cover the costs.
While I am still 4 years away from qualifying for Medicare, I understand they DO cover the costs of IVIG. I have been getting infusions every 3 weeks at a “charged” price of $25,000, with the “insurance will cover” cost of $9,000. So about 18 infusions per year x $9,000 = $162,000 per year for IVIG treatments.
Since Rituxan has much longer lasting benefits than IVIG treatments (if they help your anti-MAG), I wonder if Medicare could be convinced to cover your Rituxan if you showed them the yearly cost of Rituxan vs. IVIG treatments. Maybe you already have done so? I find it hard to believe that Rituxan infusions every 6 months or 3 months would be more expensive than IVIG every 3 weeks.
February 12, 2018 at 5:11 pm
I have also read that allergies are a side effect of IVIG, as well as headaches. I always get a mild headache that starts 2 days after the IVIG infusion and it lasts for 3 days, even after taking Ibuprofen. But you are wise not to get the IVIG anymore due to the allergic reaction. My allergist says that each allergic reaction can be worse than the one before. That is good that after 4 years of stopping your IVIG that your condition has only very slowly worsened. After two months of IVIG I am walking faster and balance is better. My neurologist prescribed a total of 6 months of IVIG so I will report my progress on this thread.
But I hope for all of us the Polyneuron.com anti-MAG clinical trials will be a success. I am thinking of going to Switzerland for the Phase 1 clinical trials if they will accept me.
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