[Brad Herndon]

Hi Gary,

I started Vyvgart infusions back on July. 4 weekly infusions that ended on August 8th. I am currently in between 1st round and 2nd round, scheduled to start round 2 next week. I definitely noticed an improvement in between 2nd and 3rd infusion, and so far, it is holding. Reduction in double vision and improvement in fatigue and strength. Probably about 50% better. My MG-ADL scoring went from a 10 to hovering between 5-7. I am hopeful that I can see more improvement once I have started the next 4 week cycle. I see my neurologist in October for post infusion health assessment. The hope is that I can start the weaning off of prednisone and mycophenolate. The prednisone has caused an increase in eye pressure, so I am currently taking daily glaucoma drops, which I absolutely hate. Add to intermittent double vision dryness, itchiness, irritation and bloodshot eyes. My eye doctor said about 40% of patients have this reaction to the drops.

Very happy for your improvements and feel very blessed to have decent health insurance to cover the high cost of the medication. Best of luck.

[Brad Herndon]

I have generalized MG with the primary symptoms being diplopia and ptosis, which are currently kept in check with alternating days of 20mg/17.5mg of Prednisone along with Mycophenolate.  Mestonin was a non-starter for me as it wasn’t that effective and produced the unpleasant side effects of stomach upset and intermittent eyelid spasms…very annoying.

I have been on this current treatment regimen since April of 2022.  Everything is pretty normal, except for the occasional bout of fatigue and worsening diplopia when I get either really tired or overheated.  My neurologist tried to wean down from 20mg to 10mg during the summer, but ocular related symptoms returned at that level, so she elevated back up to 17.5/20mg prednisone alternating days. …so a tiny bit down from original max dose of 20mg per day.

I , too, know that you can’t stay on prednisone forever.  So far, only ill affects have been suppressed adrenal gland function re: cortisol, but otherwise A1C, other internal functions and levels have stayed normal.

I fully adopted an anti-inflamatory/lectin free (Gundry) diet since this started and have been able to lose some lbs since then…I was fearful about the prednisone causing weight gain.  This, along with daily walking and some light kettle bell workouts thrown in…I think…have all contributed to maintaining these milder symptoms.

My official diagnosis was last December 2021, but this journey actually started 2 years earlier when a surgical ophthalmologist misdiagnosed my condition as strabismus, subjected me to surgeries on both eyes, with only temporary resolution before the diplopia and ptosis returned.  (When I couldn’t get further help from eye surgeon, my PCP is the one who referred me to a neurologist upon observing the ptosis.)  Based on these factors (that initial onset of MG was most likely 2 years prior), my neurologist feels like my condition will most likely stay at its current level or possibly improve, but the big challenge of getting off the Prednisone remains.

(As a side note:  when an adult develops sudden ‘idiopathic’ double vision and eye surgery is recommended, the first thing that should happen is the doctor should order an AChR blood panel…which would have saved me a lot of expense, frustration, and unnecessary surgeries.  I hope that my ophthalmologist will take this to heart, seeing how big his eyes widening when I told him upon follow visit that I had an MG diagnosis.  This should just be standard procedure.)

I could get lucky and the Mycophenolate could start having a more significant positive impact on symptoms (my neurologist has stated that it can take up to a year for Mycophenolate to fully kick in if it is going to help as a treatment option, so still a wait and see on that. Theoretically, this would support the prednisone wean off.

Sorry for the long winded post, but hopeful that there will be a good replacement for steroids without side affects someday.

I appreciate all the good information and feedback and am so respectful and mindful of everyone’s journey.  I learn something every time I long on.

Thanks.

[Brad Herndon]

Hi N Muruga,

That is absolutely not true.  If you have the resources, you need to connect with a Neurologist, preferably, an MG specialist, if possible.  There are multiple treatment approaches.   Some won’t work for everyone but many do.  It is a bit of trial and error, but so important to connect with good clinicians to help guide the journey.

Best of luck!

[Brad Herndon]

I know there is so much more being discussed on this thread, but I want to echo how, in my opinion, it is so important to find a neurologist with a specialty in the neuromuscular subgrouping of neurology.  It was a night and day difference between the first neurologist I went to who, honestly, didn’t seem to have a lot of experience with MG to the 2nd neurologist who specializes in neuromuscular area.  The experience was completely different in a positive way.  I feel really lucky to at least appear to have found a good fit on the 2nd try.  I know others have struggled for a lot longer to find a good match.  Mestonin was not effective for me with my ptosis and diplopia symptoms, but so far, Prednisone, 20mg per day, is working really well.  I know its not a permanent fix, as long term use has some pretty negative side effects.  But, discussions were opened addressing this before leaving my first visit with my new neurologist, with the longer term goal to taper off steroids and move to a non-steroidal solution.  I know that will take a while.

I am very early in my diagnosis (4 months) but at 61 years old, I know that this can get much worse.  My process actually started in 2019, resulting in a mis-diagnosis and 2 strabismus eye surgeries that have ultimately ended up unnecessary.  Thankfully, the procedures I have had do not seem to be affecting long term prognosis, and upon follow up consultation with eye surgeon, are completely reversible.

Another thing I want to mention.  I have added to my treatment approach a total diet change.  I consulted with my PCP and neurologist about this before starting, to make sure what I was doing had no adverse affects on treatment and outcome.   I am giving a trial run to following the Lectin Free diet plan created by Dr. Stephen Gundry.  (Moderator: if endorsing a book or diet plan is not allowed on the forum, please advise and I can retract the verbiage).  He talks about how following this plan can have dramatic reversal of impacts of numerous autoimmune diseases. I know that this is not for everyone and I personally would probably not recommend it unless you are experiencing some health related issues and challenges.  But after to being on it for about a month, I have noticed a dramatic improvement in overall health, I have lost a good bit of weight despite being on the prednisone, and I think it is working well to support the effectiveness of the medication I am taking.  Think of it as a more restrictive Dr. Weil type of anti-inflammatory diet.  Lots of restrictions, so its  a tough transition.  Also, it requires a lot of meal prep and sourcing from good, organic sources, so it can be a bit expensive.  But I am finding that the costs are offset by buying less groceries, getting delivery and take out less, as they aren’t allowed (I am still not doing dine in due to Covid lingering), so that seems to be a wash.   But it does take a bit of time to get into a rhythm.  I would encourage at least checking it out.   Plant Paradox by Stephen Gundry.

Love this site and all the fantastic information, the sharing from others of your experiences, and I come away learning something every time on log on.  Thank you all for your stories, comments and contributions!   Take care.

[Brad Herndon]

After being recently diagnosed with MG at 60 years old, and being paired with a specialist that was not a good fit, I think I have now found a good match with a Neurologist.  Win! Very engaged, patient, thorough, empathic…and energetic about addressing my concerns and symptoms. On first appointment, I came away knowing so much more than I did from first doc match.  So that is a definite win. Working on medication selection.  After being on Mestinon for a month, along with Prednisone, she quickly assessed that the Mestinon was not helping me. So she had me discontinue.  WIN!  That stuff was wreaking havoc on my digestive track.  Its been two days and I already feel 100% better from a digestion perspective.  Still very early in the process, but starting to see improvements in my Diplopia and Ptosis.  She also confirmed I have Generalized Myasthenia Gravis and showing signs of body-wide affects, so first steps will be to work with Prednisone and maybe introduce another non-steroidal med.  The process will be gradual, but really feeling better about my prognosis.   I am hoping I can see some improvement in endurance and body weakness.  We’ll see.  Really appreciate the opportunity to share and to gain so much great knowledge and information from this member group. Thank you!

[Brad Herndon]

Hi All,

I am 60 years old and very recently diagnosed with MG, and am currently taking Pyridostigmine Bromide 270mg per day  and prednisone 10mg per day.   I am also currently scheduled for my first appt. with a 2nd neurologist, as I quickly realized that the neurologist I was referred to has not really been a leader in this process.  Each time there has been an adjustment in medication or reports of ineffectiveness of treatment, I have had to reach out to his office.  There has been no other live interface since my initial appt. He won’t answer my questions I submit through the office portal.  I just get a phone call from his assistant telling me to adjust the meds.  No instructions to check in, report results, etc.   This approach won’t work for me.  To one day go from a pretty healthy 60 year old on no medications to being diagnosed with an incurable autoimmune disease…this hands off approach with a physician is not going to work for me.  Not looking for constant hand holding, but a little more back and forth is not too much to ask.

I am less than 30 days out since diagnosis, and am actually seeing some improvement in symptoms.  But I suspect this was not the beginning of my journey.  Christer, I wish I would have had an ophthalmologist as intuitive as yours because I think my MG was missed as far back as 2019.

I started noticing some very minor “ghosting” or very slight double vision intermittently in Fall of 2019.  I didn’t think much of it, since it came and went.  I chalked it up to eye strain, tiredness, etc.  In December of that year, I went to see my optometrist for my annual checkup and renewal on contact lense  script.  She was not able to correct the misalignment within tolerances for my left eye.  My appt. happened to be during one of the “ghosting” periods, but I guess it was worse than I thought.  She referred me to an eye surgeon, as she thought that I was suffering from Adult Strabismus.

I saw the eye surgeon in January of 2020.  He recommended surgery to correct the misalignment. My diagnosis was “Idiopathic Adult Strabismus”.   The first surgery was in February.  The doubling stopped for a few months, but then returned.  On a follow up visit to the surgeon, he recommended a correction for the right eye.  This was performed in June of 2020.  After the 2nd surgery, I did not experience an doubling for over a year until fall of 2021.  Again, it was intermittent.  I went back in to see the surgeon and he recommended that I do some computer based eye exercises.  This seemed to provide some improvement, but was not consistent.

Then, with the onset of the 2021 holiday season, things started to change.  This was the first time I noticed that my right eyelid was drooping.  It was very slight, intermittent, so again, I chalked it up to being tired, etc.  Then,  a few weeks before Christmas, the ptosis became constant and the double vision got much worse.  It was also during this time that I noticed in the mirror one morning that my face didn’t look right.  The right side of my face was sagging and the corner of my mouth on the right was lower than the left.  This definitely got my attention, because now I was thinking either a mild stroke or Bell’s Palsy or something was going on.

This post is becoming really long…sorry.  Since January of this year, I have seen my PCP, a neurologist, had a head CT, chest CT, MRI, MRA, bloodwork, which showed really high AchR numbers, confirming the MG.  Scans have been clear, no thymoma, for which I am very grateful.  Most of this ordered by the neurologist, which I am grateful for, but to echo what most everyone here is saying, this isn’t a , “just take this and I will see you in a couple of months” type of disease.  Thus, the upcoming new patient appt. with another neurologist to try to partner with.

I can’t help but think this all began, albeit, very gradually, back in 2019.  I wasn’t showing any other symptoms other than the double vision, so clinically, I guess I didn’t present as an MG patient.  But somewhere during this eye surgery process, I wish the doctor would have ordered a AchR test.  His website even shows that he has MG patients and performs Strabismus surgeries to help with the Diplopia.  It seems to me at 58 years old, and you suddenly develop double vision, idiopathic should not be the goto unless your doctor does some testing for possible reasons to rule out other causes.

Now I have concerns that because the anatomy of the muscle structure of both eyes is different due to the surgeries, is that going to complicate the resolution or improvement of the Diplopia?  I am hopeful but, again, it is still very, very early in the process.

Also immersed in research for diet and exercise changes, possible supplements to add and anything else I can find.

Thanks for reading.  I am grateful to have found such a great resource and is a comfort to know there are others who can understand the experience.