Charles Karcher

I received my sixth Covid shot this week.  I did not even have a sore arm this time.

I had my loading dose on 09/15/2022 with my first maintenance dose two weeks later.  My schedule is an infusion every eight weeks.  My previous treatment was Soliris having begun the treatment in late 01/2020.  Soliris  enabled me to live a relatively normal life.  Since going on Soliris I have had no exacerbations at all.  Because of the succe…[Read more]

Maybe it is the difference between an Advantage plan and a Supplement but I have not paid a single cent for my Soliris treatments.  When I was on Soliris the only thing I paid for was the required Meningococcal vaccinations. The hospital billed Medicare and my Supplement $70,00 every two weeks for almost three years and I never paid a penny.  N…[Read more]

I have been accepted into TAF from the beginning of my diagnosis.  I have sent them reams of paper and it is never enough for them.  I have sent them pharmacy receipts, pharmacy summaries, Medicare electronic printouts, credit card statements, and hospital billing statements.  All I have received from TAF is requests for more paperwork.  If you…[Read more]

I have hypothroidism.  I have heard the term Hashimoto’s before but I never heard it mentioned by any of my doctors in connection to my Thyroid disorder.  I take a daily thyroid supplement.  My thyroid diagnosis predates my MG diagnosis by almost two decades.  Truly I cannot say that MG has affected my thyroid disorder in anyway.  The two diso…[Read more]

My initial diagnosis resulted in 4 separate stays each lasting 7-8 days.  The hospital insisted on treating me with plasmapheresis the first three times along with Mestinon.  Finally they realized the Plasmapheresis was nothing more than a bandaid that lasted at most two weeks.  Finally i was put on IVIG and then transitioned to Soliris and now Ul…[Read more]

I have not used  it.  My neurologist has never mentioned it.  None of the pharmacies including the hospital pharmacy where I was hospitalized for my exacerbations carries it.  Since none of my doctors prescribed I do not know if Medicare would cover it.

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.