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.
PeterFebruary 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.
PeterFebruary 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.
PeterJanuary 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.
PeterJanuary 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.
PeterJanuary 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.
PeterJanuary 14, 2018 at 12:36 pm
I just read your post from 2009 and hope you have found a treatment to stabilize or improve your anti-MAG. Not sure if you are still posting on this forum but I’m interested in an update for your condition after 9 years since your description of your anti-MAG symptoms and its progression in the feet, legs and hands is exactly like mine. I just started IVIG every three weeks for six months but doctor will try Rituximab if IVIG not effective.
PeterJanuary 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 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 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 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 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.
PeterJanuary 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.
PeterJanuary 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.
PeterJanuary 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.