Charles Karcher

My medication regimen consists of 180 Pyridostigmine ER twice a day, 1000 mg Mycophenolate per day and will receive my first maintenance dose of Ultomiris tomorrow.  I have been on Mestinon for over two years.  At first there was a moderate level of diarrhea but that eventually subsided.  I get occasional bouts of diarrhea but not very se…[Read more]

In response to the above post, I guess pandemic response varied state to state and locale to locale.  My hospital did not close it’s infusion centers.  They had 3 and close one because it was not conducive to social distancing.  Other than restricting family and visitors it was pretty much business as usual at my infusion center.

Double vision was my first symptom.  My Opthamologist diagnose me with 4th Nerve Palsy.  Before my next appointment with him I was hospitalize with slurred speech and difficulty swallowing and was diagnose with MG by a hospital neurologist.

I am puzzled by the above post.  I have been on Soliris since 1/20.  The hospital(infusion center is part of hospital)bills a horrendous amount to Medicare.  Medicare pays what it pays and by law the hospital is obliged to accept that amount.  My supplemental insurance pays what they pay and that’s that.  The only cost I have incurred for Soli…[Read more]

I just had my yearly Medicare Wellness appointment with my primary care doctor.  We discussed Evusheld.  He had never heard of it.  The government(FDA) has done a poor job promoting Evusheld when a primary care physician has never heard of it.  For now we decided not to utilize it as the new bivalent booster should be approved in a few wee…[Read more]

At my diagnosis and first hospitalization Plasmapheresis was utilized along with Mestinon and Prednisone.  After a week in the hospital I was discharged only to be readmitted approximately two weeks later.  Again Plasmapheresis was used and after a week discharged.  The same thing again.  Two to three weeks and back in the hospital.  My doct…[Read more]

My first indication was double vision.  I went to my optometrist who referred me to his affiliated ophthalmologist who diagnosed me with 4th Nerve Palsy.  The Opthamologist scheduled  a followup appointment for a month later.  Before that appontment my speech became extremely slurred and my swallowing deteriorated.  I went to the ER and was admi…[Read more]

I have been receiving Soliris for 2 1/2 years.  After Plasmapheresis failed to keep my MG under control I was put on IVIG until I transitioned to Soliris.  I experienced extreme fatigue with IVIG but that gradually faded away with the use of Soliris.  I have been stable now for over two years with no complications or symptoms other than some sl…[Read more]

The main joy in my life was live music.  Before MG and Covid I attended at least a half dozen concerts a year.  Since my diagnosis and Covid shortly thereafter I have not attended a live performance nor plan to do so.  The thought of sitting with thousands of strangers in a concert hall scares the hell out of me.  Basically I will never go bac…[Read more]

Part of the cleansing process prior to a colonoscopy includes a magnesium solution.  After first giving the go ahead my neurologist changed his mind and recommended against using the magnesium solution.  My gastroenterologist had no problem deleting it from the prep so I question the need for it in the first place,  The procedure went through wi…[Read more]

When I was on IVIG my infusions took 3-4 hours to complete.  The infusion center was able to give me a room to myself so I had peace, quiet and privacy.  The only side effect was fatigue.  I soon moved on to Soliris which only takes 35 minutes to infuse.  In some cases I spend more time waiting on the pharmacy to mix the solution.

I am now awa…[Read more]

Spoke to an Alexion rep yesterday.  I am on Medicare and she said they had already successfully authorized a few patients.  She was going to work on my case.  She said it was unlikely I could switch over for my next Soliris infusion(05/28) but was possible for the infusion after that.  I have some trepidation making the switch because Soliris has…[Read more]

I am on Soliris.  Saw my neurologist’s NP last week and mentioned Ultomiris.  I also have reached out to my Alexion Onesource rep to get things moving forward for the switch.  Not familiar with the path from FDA approval to Medicare approval.

I received my fourth shot today.  All four were Pfizer.  My third was in mid August.  Sore arm was the only reaction with any of my shots.  Do not plan to alter my daily routine based on this latest vaccination.

My first symptom was double-vision.  My optometrist referred me to an ophthalmologist who diagnosed me with 4th Nerve Palsy.  It was only after I went to the ermergency room with swallowing issues and slurred speech was I diagnosed with gMG.  Fortunately that first trip was all it took.

I had IVIG treatments after my MG was not controlled by plasmapheresis and Mestinon and Prednisone.  I was never given Benadryl or anything else but saline with the IVIG. I had the five day treatment in the hospital. After a month of twice weekly treatments I was switched to Soliris.  The side effect I remember was fatigue.  I do not remember ar…[Read more]

My most severe symptom has been difficulty swallowing.  I was previously diagnosed with Acid Reflux with Barrett’s Esophagus.  Now when I have some difficulty I am unsure if it might be MG or Acid Reflux.  I take medication for both.

I was initially diagnosed with 4th Nerve Palsy.  My opthamologist said if it did not get better on its own than we would try Prismatic lenses.  I still have double vision but not to the point that I need those.  You might ask your neurologist or if you have an optometrist or opthamologist you trust if this might help you.

I have been on 2000 mlg per day for almost two years.  I have not had any side effects that I am aware of.  I know that is an immunosuppressant but either because of staying as close to home or simply good luck, I have not been sick at all since starting to take it.

The most extreme of my symptoms was the near complete inability to swallow.  Before I was stabilized all four times I was in the hospital I required a feeding tube.  The first time they used a full size tube.  I thought I was going to die while they were getting it in.  It was perhaps the most horrible experience of my life.  The other times whil…[Read more]