Charles Karcher
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Original poster here. With about 20 days left I found an independent pharmacy that is able to get me a 90 day fill. None of the major pharmacy chains could fill my prescription though Walgreen’s could get me brand name Mestinon($1319 and no insurance coverage). Pick up Monday.
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I checked two days ago and none was available. The pharmacy said next check date would be mid-April. I have about 30 day supply on hand. The supplier the pharmacy uses is in India.
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I was originally on 60mg 4 times a day then increased to 6 times a day. My neurologist then moved me to 180mg extended release twice a day that has proven to be the best course for me. I still have 2-3 stools in the morning but the rest of the day is good.
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I was on Soliris for 2 1/2 years. I switched to Ultomiris approximately 1 1/2 years ago. Ultomiris works just as effectively for me and has the advantage of being an 8 week interval between infusions. I do not understand the combo of plasmapheresis and Soliris. My neurologist put me on Soliris after plasmapheresis would only last 8-10 days and I would end back in the hospital.
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My symptom that is only partly controlled is my double vision. I have double vision if I look at something off axis. I also have double vision if I have my head down and look up with only my eyes. If I look directly my vision is fine. None of my treatments have stopped this. If that is the worst I have I can live with it.
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My initial symptom was double vision. I was diagnosed with Fourth Nerve Palsy by my Opthamologist.
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I received my sixth Covid shot this week. Â I did not even have a sore arm this time.
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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 success of the Soliris treatment it was with a little bit trepidation that I made the switch to Ultomiris. I did have quite a bit of confidence that Ultomiris would prove successful since it works in the same manner as Soliris. I went to Ultomiris with no expectations that it would work better than Soliris but would improve my life just by the simple fact that I did not have to plan my life around a biweekly infusion schedule. So far this has been the case with my symptoms, energy and overall health the same as on Soliris. Possibly my ability to swallow as slightly improved. I have had zero side effects in the seven months I have been on Ultomiris. The only downside is the social aspect of seeing my infusion nurses every two weeks but I will take the eight week schedule as an overall acceptable tradeoff.
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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. Now for my Ultomiris the hospital bills $180,000 every eight weeks and no change.
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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 received help from them good for you. All they did for me was frustrate me. I tried for two years to get help from them and finally gave up.
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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 disorders for me do not interact.
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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 Ultomiris. I have not been in the hospital for three years.
Some of the things I learned. Before you go get all your electronic devices and chargers together. Because my speech was heavily compromised I took a clipboard with ample paper for communication.
The most important thing I learned was to stand up for yourself. Most of the nursing staff were good people but I had a couple of incidents where I had to get management involved because I was not receiving the quality of care that I should.
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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.
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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 severe. My symptoms are well controlled except having double vision with my head in certain positions. I have been on Soliris for 2 1/2 years and hoping that Ultomiris is as effective.
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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.
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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.
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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 Soliris was the Meningococcal vaccines required before beginning Soliris. Medicare refused to cover them and all appeals failed. Truly the only real costs I have had to pay myself have been the Part D drugs (Mestinon and Cellcept) that I take. I know the post refers to IVIG but I was on IVIG before Soliris and had no out of pocket expenses for that treatment either.
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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 weeks. He promised to look into Evusheld more completely.
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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 doctors apparently love Plasmapheresis for they tried it for a third time. After that failed I guess someone got that was not going to work.( the definition of insanity is doing the same thing again and again and expecting a different result). I was given a 5 day course of IVIG and discharged with orders for biweekly infusions of IVIG. I was on IVIG for only 6 weeks before changing to Soliris. I had no side effects from the infusion of IVIG. I did suffer from great deal of fatigue during the course of taking IVIG but cannot say for sure if it was due to the IVIG or just being in and out of the hospital over the course of three months. At least from me Plasmapheresis was a near worthless therapy that only delayed the proper therapy from being implemented.
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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 admitted and fortunately diagnosed immediately.
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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 slight double vision with my head in certain position. I have had no side effects whatsoever. The dosing instructions recommend an hour wait after the end of infusion but after no ill effects after two infusions that went by the wayside. The infusion takes 35 minutes and sometimes I have to waiter longer for the pharmacy to mix the infusion than the actual infusion takes.
I will be transitioning to Ultomiris perhaps as soon as next week. Changing to an eight week infusion schedule will be a welcome change. While there may be no ultimate victory against MG with Soliris I have been able to maintain a close to normal lifestyle.
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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 back to a concert hall. I am considering weekday movie matinees after the movie has been out for a couple of weeks but have not yet. I am basically homebound.
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And this is relevant to the subject of this thread how?
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Fortunately I am able to exercise on a regular basis. I walk on a treadmill daily with a goal of 3 miles daily which I am usually capable of meeting. I exercise with hand weights intermittently using 5lb weights. While the primary goal is weight control the muscular development is also useful.