ila.falvey@gmail.com
Your Replies
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June 18, 2021 at 7:01 pm
Eileen
How do you know that you developed CIDP as a result of a flu shot? Did you report it to the CDC?
I have MAG and had no significant reaction to the Pfizer vaccine.
Ila Falvey
February 20, 2021 at 8:38 amI had both my vaccinations – Pfizer brand and had mimimal reactions – just a sore arm.
We should collect data as there is none from the trials. As mentioned by the CDC, individuals who have autoimmune diseases were excluded from the trials. This forum and Jim as moderator would be a good person to do so if he is willing.
Ila
January 8, 2021 at 9:21 amFrom the CDC website
People who have autoimmune conditions
People with autoimmune conditions may receive an mRNA COVID-19 vaccine. However, they should be aware that no data are currently available on the safety of mRNA COVID-19 vaccines for them.My question is. “Has anyone with MAG received the vaccination”? Please let me know.
Having been treated with both IVIG and Plasma Exchange with no benefit, I don’t think anyone should be under the false impression that these treatments will provide relief.December 11, 2019 at 9:52 amI have MAG. Diagnosed over 3 years ago. Have tried the available treatments – IVIG, Plasma Exhange, and Rituxin but the disease continues to progress. Have stopped everything except exercise and am hoping for the best as the progression of the disease is beyond my control.
Please free to contact me.
I don’t know the rules of the forum. Can an email/phone number be provided to have an offline discussion?
IlaFebruary 10, 2018 at 8:30 amI 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.
Thanks,
IlaJanuary 10, 2018 at 10:51 pmThanks 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 8, 2018 at 6:40 pmI was curious whether I could find out how many people have this disease and I found this info from across the sea.
http://www.gaincharity.org.uk/pdf/Anti_MAG_sheet.pdf
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.
IlaJanuary 7, 2018 at 10:08 pmThis gives a dosing schedule for a 10% IVIG solution
http://www.health.gov.nl.ca/health/bloodservices/resources/pdf/adult_invig_inf_table.pdfJanuary 7, 2018 at 5:06 pmOther 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 6, 2018 at 5:54 pmThis summary is interesting reading.
http://www.bloodjournal.org/content/108/11/5122?sso-checked=trueJanuary 5, 2018 at 10:11 pmSundayrush 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.
IlaDecember 28, 2017 at 1:04 pmPeter
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.
IlaDecember 27, 2017 at 9:19 pmWelcome 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
IlaDecember 21, 2017 at 2:19 pmOur 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 20, 2017 at 10:35 pmPursuing 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.
Ila
