Peter
Your Replies
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January 6, 2018 at 1:59 pm
Heidi,
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. 😉
Peter
January 1, 2018 at 9:39 pmHi Heidi,
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.
Peter
December 29, 2017 at 3:56 pmHi Ila,
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!
Peter
December 29, 2017 at 3:34 pmHi Heidi,
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.
Peter
December 28, 2017 at 12:08 pmHi Ila,
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!!
Peter
December 27, 2017 at 6:55 pmHi Heidi,
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:
Dear Peter,
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
contact me.Kind regards,
Pascal Hänggi, PhDDecember 27, 2017 at 5:19 pmHi everyone,
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.
Peter
