HELP IVIG not working post covid 19 infected April 2020.
March 12, 2022 at 12:00 pm
Covid 2020, not bad case. Had Cidp treated for 4 yrs. Diagnosed, 2016 following ankle surgery metallic screws etc., 2015 late diagnosis, because all symptoms were attributed to ankle, Feet and hands. Finally got Dx, NYC, great doc, IVIG got me out of wheelchair, but never back to normal, needed cane, stopped work. Followed same IVIG w same doc until July 2019, doc left for bio pharm job. After covid, I slowly regressed, saw doc that replaced mine June 2020. New electros, worsened. Other than changing dosing and IVIG frequency, no other option is offered, as too dangerous, wont work, etc. I changed centers, got new doc, same answer, and now he has left for private sector too. My CIDP has changed, not tingling, no pins, no dropped foot and wrists, no, numbness, now aches, muscles tightness in feet, toes curling down, joints in hands feel achey and tight, feels like wearing gloves 5 sizes too small. Ankles range of motion so tight. Balance gone. PT and stretching makes tighter ? IVIG almost feels like nothing or worsening. Have read many articles people with neuropathy with covid have exacerbated. I had metal tests on along shot the entire condition is some toxicity. I had tests of metals done by only lab in US that does it. I am sensitive to nickel, off the chart, which is in stainless steel. I am unable to get any doc to consider any other treatment, or entertain the covid exac. as factor, or the metal. In NYC and excellence docs are now few. Now when I try to make appt with new doc. they get large records and tell me stay where I am, they wont have anything else, or say see a rheumatologist, may have wrong dx. Have had 3 electros, all COE docs, said CIDP poly neuropathy. I am frustrated, exhausted, and bewildered what else to do. My IVIG nurse that comes to house says all her pts w CIDP,that got covid are worse, with similar symptoms. They have been on IVIG , prednisone, and plasma phoresis exchange added. No changes. Any suggestions or input appreciated. Read here JIM LA, knows many other treatments, no doc here seems to want to hear it ? I don’t know how to contact Jim LA here, only see his replies to other people. Can anyone tell me how, so thankful. Sorry for so many typos, my hands so debilitated.
March 12, 2022 at 3:48 pm
There are a number of alternative therapies that might work for some. My first choices would be Rituximab (Rituxan) or CellCept (mycophenolate). Myfortic (mycophenolic acid) is a good alternative too, but you’ll need regular blood tests. CellCept (mycophenolate) is a first-choice medication for preventing organ rejection since it doesn’t hurt the kidneys or liver like its alternatives. But it can have side effects for some.
In a few more cases, immunosuppressive drugs such as Imuran (azathioprine), Prograf (tacrolimus), cyclophosphamide, Afinitor (everolimus), cyclosporin, Rapamune (sirolimus), and type 1 interferon (INF-1?) and IFN-beta – can be used to limit corticosteroid and immunoglobulin use and may be indicated because of disease progression or poor response despite aggressive treatment with established therapies such as IVIg.
In all cases do your research on each drug and discuss them with your doctors. Maybe get a sample of the meds before getting a large amount to make sure you tolerate it OK. Also make sure they are covered properly by your insurance because some can be costly.
Many of the alternative drugs are discussed here:
There are many discussions about supplements in these forums too. Here are a few that might be helpful:
Vitamins and supplements for CIDP
Deficiencies of vitamins B12 (Methylcobalamin 5000MCG) and D3 (125MCG, 5000IU) have also been known to be involved with CIDP-related muscle atrophy and some members have cited taking such supplements as helping improve their condition. More info here:
Pammy, I wish you the best of luck in finding what might work for you.
March 12, 2022 at 4:39 pm
Yes , so kind, articulate, brilliant, Know all those avenues possible. BUT CANT GET A DOC TO GET ONBOARD IN NYC, EVEN AT CENTER OF EXCELLENCE. iVIG, steroids, plasmapheresis. If you know of anyone doing more or what you suggested, IN NY, let me know. I cant get those RX from anyone that is unwilling, hesitant,uninformed, or just tired of doing this. My 2 best named as ” excellent” cidpgbs docs here when I was first diagnosed, Gone.
March 12, 2022 at 9:21 pm
NYC is a vast area and there are many GBS-CIDP laisons there. What area are you in (name, zip code, etc.)?
March 12, 2022 at 9:50 pm
Im on the Nyc Long island Border. Been going to Manhattan. I know the heavy hitters…you cant ask them anything, show them anything, suggest, question, they r tired, many have left, have to pick up pt. overflow after resignations, no new hires. If I try to make appt w new doc, facility, they look at the voluminous records and say stay where you were. Cant see anyone else in that original group, except the doc that took over for him, that is director, that was doing research, lecturing around country, publishing books, and now he has to go back to seeing pts w diseases that new treatments have evolved but he has not. I have zoomed in LA, COE, have other ideas, protocols, cant do it from there. They were very empathetic with the situation of rigidity.
March 12, 2022 at 10:25 pm
Try these GBS-CIDP Foundation liaisons for referrals:
Beverly Baker (Bronx, Queens)
732 597 1115
Michael Ring (Brooklyn)
347 328 3713
March 13, 2022 at 12:47 am
Thank you, for contacts Im on long island border of NYC, anyone in long island like zip 11030 ? Ill check queens too. Too kind. Freezing tonight !
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