Do you have refractory Myasthenia gravis or MG that is difficult to control with treatment?

[Jennie Morris]

Unfortunately, nothing works forever for me. Even drugs for other conditions such as antibiotics for infections have a limited time effectiveness, including a cancer treatment before I was diagnosed with MG. My body begins to reject (develop side effects) or build a resistance to every drug I’ve ever taken. Add to that, I’m very sensitive to every treatment – IVIg = aseptic meningitis; SCIg = blood clots; Imuran = anemia; Cellcept and Tacrolimus = anemia and severely low blood pressure; Rituxan = severely low blood pressure, dryness leading to reduced vision, diarrhea; Prednisone = extreme weight gain, uncontrollable anxiety and mood swings, severe depression, insomnia, increased MG related weakness that improved once the treatment was stopped. I just completed my 2nd course of Vyvgart and have some improvement but I’m very concerned since both anecdotal and Argenx reports have showed there are increasing concerns about diminishing effects with long term use. I have gMG with compromised lung function due to diaphragm strength and scarring from aspiration. I’m oxygen dependent and use a ventilator for sleeping and during the day when needed. With Vyvgart, I am functioning without a walker or wheelchair but my stamina is minimal. I’m really concerned about what’s next. I was diagnosed in 1981 and it’s been a very long battle. My thymectomy was performed within a few months of diagnosis but with the addition of prednisone that increased weakness, I don’t know if it helped.

[Tonykrony]

Hello Jodi

My Neuro Dr. Has never called my MG refractory, but I have been difficult to treat. I had 2 plasma exchanges in 11 months. I was treated with IVIG 60 MG. Every 28 days. For 18 months. It worked on some of my symptoms for about 20 of the 28 days between in fusions. Currently using Vyvgart every 30 days. It works for me on most of my symptoms. I still have left side double vision when I lay down on my left side, and I still get that afternoon weakness slump, sometimes requiring a short nap. But I do feel better on Vyvgart every 30 days.

[kenneth j. bialkowski]

I have refractory MG and was hospitalized twice for severe flare ups. About 5 years ago I had a course of Rituximab and have since been on weekly IVIG infusions (Cuvitru). My symptoms (speech, chewing, swallowing, breathing) have been well controlled ever since allowing me to live a fairly normal life. Most people would never know I had MG.

[jeri castellanos]

I was diagnosed with ocular MG in 2013 (although it took until 2018 to actually get a positive test). Everything i have been given has worked sporadically. I have been on Prednisone for 10 years (which is literally killing me) and everything we try to get me off of it does not work. I have taken Cellcept which did nothing. Imuran which is a bit better but i still have double vision when looking to the left. I got IVIG infusions for 16 months (Gammagard) but every time i tried to lower my prednisone dose, i got worsening symptoms. I also tried Vyvgart to no avail. Rituximab was nixed because i was exposed to Hepatitis. Even when i stay the course with prednisone, it stops working for periods of time. In 2017 after changing NOTHING, i wound up with double vision for over 7 months which could not be controlled with anything. I do believe that part of the uncontrollable symptoms are due to the amount of stress in my life, but there has never been anything that will completely control my symptoms for any amount of time. Prednisone has completely destroyed my body and my life and at this point i am willing to try anything else.

[James McCay]

I WAS A 16-YEAR MEDICAL PROFESSIONAL (ADVANCED EKG/ECG INTERPRETER/EDUCATOR) WITH WIDE RANGING MEDICAL EXPERIENCE. THROUGH 20-YEARS OF RESEARCH WHEN MY SYMPTOMS ALL CAME OUT FULL FORCE- SADLY I KNOW MORE ABOUT MY DISEASES THAN MOST NEUROLOGISTS TO THIS DAY.

I’M A 2ND GEN CAMP LEJEUNE POISONED WAT<font color=”rgba(0, 0, 0, 0)” face=”inherit”>ER VICTIM. MY DEADBEAT FATHER SERVED ON THE BASE FOR 18-MONTHS IN 1953-54. HIS DNA WAS DIAGNOSED AS “ALTERED” CAUSING HIM TO SUFFER & DIE FROM KIDNEY CANCER/FAILURE AT AGE 79. I WAS BORN WITH THIS ALTERED DNA IN 1967 WITH TWO OTHER NEUROMUSCULAR DISEASES (I WAS SYMPTOMATIC </font>UNDIAGNOSED<font color=”rgba(0, 0, 0, 0)” face=”inherit”> MY WHOLE CHILDHOOD- BUT ALL WAS MINOR COMPARED TO AFTER 2001). MY ILLNESSES FULLY ALL CAME OUT, ALL AT ONCE- SOON AFTER 9/11/01. BESIDES MG, I HAVE DEGENERATIVE DISC DISEASE (FIVE MASSIVE NECK. L5/S1 LOWEST BACK HERNIATED DISCS, & FIBROMYALGIA/BILATERAL SCIATICA.</font>

I WAS FINALLY DIAGNOSED WITH GENERAL MG AND AN XL HYPERACTIVE THYMUS GLAND BY 2006 (THEY CALLED IT A THYMOMA WRONGLY UNTIL 2011). THIS EXPLAINED WHY SO MANY OTC & PRESCRIPTION MEDICATIONS EITHER HAD NO EFFECT ON ME, OR CAUSED ONLY BAD SIDE EFFECTS MY WHOLE LIFE. THIS IS QUITE RARE, BUT ALMOST NEVER CORRECTLY DIAGNOSED! SINCE 2009, NO NEW MEDICATION HAS WORKED AT ALL ON ME. NON-OPIOID MEDICATIONS NEVER DID A DARN THING TO HELP MY WIDESPREAD MUSCLE/NERVE PAIN.

BUT METHADONE DID, SO I STUCK WITH THAT FROM 2003-PRESENT WITH NO SIDE EFFECTS AT ALL. NO “HIGH” AT ALL EITHER EVEN AT THE HIGHEST DOSE; 180MG TWICE A DAY (BID)! I MADE MY PAIN MANAGEMENT DOCTOR LOWERED IT BACK DOWN TO 150MG BID WHEN I REALIZED 180MG DIDN’T HELP ONE BIT MORE. I HAVE SOME CONSTANT PAIN EVERYWHERE NOW (BOTH LEGS ALWAYS THE WORST, LOWER BACK 2ND WORST)! THEN IN 2010 THEY FNESOUND THE FOUR ‘MASSIVE” HERNIATED NECK DISCS (C3-C7) WITH PINCHED NERVES. THE METHADONE DOESN’T HARDLY HELP THAT AT ALL & IT AFFECTS BOTH SHOULDERS AND CAUSES BOTH ARMS TO FINGERTIPS TO GO DEAD DAILY. I GET THE BURNING NUMBNESS/TINGLING OFTEN WELL.

THEN CAME THE 2016 CDC OPIOID GUIDLINES WRITTEN BY ONE PSYCHOLOGIST AND ONE FAMILY DOCTOR; NEITHER WHO HAD ANY MORE THAN AVERAGE OPIOID EXPERIENCE (WHICH IS VERY LITTLE!).THE FDA AND ATTY GENERAL FOR HEALTHCARE STATED PUBLICALLY THESE GUIDELINES WERE USELESS AND DANGEROUS TO THOSE WHO TRULY NEED OPIOIDS FOR ANY QUALITY OF LIFE! BUT NO DOCTORS REMEMBER THAT! MY ONCE WONDERFUL PAIN DOCTOR (SINCE 2010) WAS MADE PARANOID BY THESE GUIDELINES AND LOWERED EVERY ONE OF HIS OPIOID PATIENT’S MEDS BY 10% TO 100%. HE TOLD ME ALONE TO MY FACE “I’M TOTALLY BREAKING MY HIPPOCRATIC OATH!”. ADD TO THAT THE SEVERE MEDICARE/MEDICAID CUTS THE DEMS MADE IN NY, CHICAGO, CA STARTING IN 2010, MY ONCE GREAT CARING DOCTOR BECAME A PATHOLOGICAL LYLING, UNCARING, MONEY HUNGRY JERK (PUTTING IT NICELY). PLUS HE’S THE LAST CHRONIC INTRACTABLE PAIN DOCTOR I’VE BEEN ABLE TO FIND IN NY.

I’VE BEEN LEGALLY HOMEBOUND/MOSTLY BEDRIDDEN SINCE 2012. I HAVE NO FAMILY, AND FRIENDS DISAPPEAR WHEN THEY REALIZE HOW SICK YOU TRULY ARE EVEN THOUGH I NEVER ASKED ANY OF THEM FOR A THING!. I CAN’T EVEN BLAME THEM, PLUS MY SMALL FAMILY ONLY STOLE MONEY FROM ME, I COULD WRITE BOOKS IF NOT SO SICK EVERY DAY!

AFTER SEEING LITERALLY DOZENS OF NEUROLOGISTS IN NYC’S BEST HOSPITALS (WHEN THEY WERE STILL THE BEST PRE-2010), NO ONE EVER TRIED ANY MG MEDICATIONS ON ME??? YET KEPT GIVING MUSCLE RELAXERS THEY TRIED BEFORE FOR DECADES THAT NEVER DID ANYTHING AT ANY DOSE! BUT MEDS I DID START PRE-2009 STILL WORK (NOT AS WELL, BUT THEY WORK); METHADONE, GABAPENTIN (RECENTLY STOPPED WORKING TOO), 800MG IBUPROFEN PRN & 5% LIDOCAINE PATCHES ON MY CALF MUSCLES AS NEEDED WHEN THE PAIN IS SO BAD IT RADIATES TO THE SKIN.

THE TWO MOST COMMON MG MEDS CAUSED MY WEAKNESS/FATIGUE TO GET FAR WORSE AS DID STEROIDS, AND MANY OTHER MEDS. NO MUSCLE RELAXERS, OR NON-OPIOID PAIN RELIEVERS EVER WORKED MY ENTIRE LIFE. SO I BUILT QUITE A HIGH TOLERANCE TO PAIN PRE-FULL FORCE DISEASES (LATE 2010 AT AGE 34). I HAD A ROOT CANAL AT AGE 21, WITH NO ANESTHESIA JUST TO SEE IF I COULD HANDLE IT AND I DID; NO PROBLEM!

EVERY NEUROLOGIST TOLD ME I NEED A RADICAL THYMECTOMY AND NO ONE WILL DO IT WITH ALL MY MEDICAL ISSUES…

[Douglas Manning]

I like the term refractory MG. It does identify the likely low percentage of those of us with generalized MG who have mostly been through a ‘been there, done that’s experience with treatments. My neurologist used the term “refractory” to describe my case back in 2017. As mentioned by others in this string, at times, the treatments can be worse than the disease. After going through the whole gamut, I am fortunate enough to be minutes away from an Apheresis center so that I get a plasma exchange every 10 days followed by an infusion of Soliris. I’m also on a 20mg/daily dose of prednisolone and buckets of pyridostigmine (780mg total between 60mg and 180mg ER caplets). The good news, I am stable and haven’t had a crash since 2019! Life is fragile, but cherished