jeri castellanos
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I was supposed to get a 30 day supply of Pyridostigmine 180 ER on March 4 and was told the same thing. I wasnt able to fill it until March 20th. I saw my neurologist in the interim and all he said was that i would have to switch to 60mg tabs if i needed to get it right then. Unfortunately the 60 mg doesnt work for me.
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i had the same issues using the 60mg tabs. My Dr. had me taking a ‘swig’ of Imodium every night as a preventive measure. It worked but i wasnt all that keen on adding yet another chemical to my body……When i got up to taking (5) 60 mg tabs per day i had had enough, so my Dr. switched me to the 180 mg ER/per day. The diarrhea became much less frequent (and the pills worked better for me). I still get occasional diarrhea, but not as bad. These also don’t bother my stomach as the 60 mg tabs did. And i have stopped taking my stomach meds also.
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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.
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i have worn an eye patch many times after being diagnosed when my medication failed (which happens often) I have never been told that it would help “strengthen” my eyes. I have never noticed my eyes getting stronger because of it. Yes it is embarrassing to wear in public but sometimes it is necessary. If you want to drive, or not run into anything then it is a necessity. It sometimes makes me dizzy and there is no depth perception but if you’re careful with a patch it can help. Unfortunately sometimes there’s no alternative if you want to function.
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I have been on Mestinon for Ocular MG since 2013. For over a year it worked fine on its own. Then the double vision came back. My Neurologist put me on prednisone in 2014 and i have been on it ever since. there are times it has worked and times it has not. My dosage has gone up and down over the past 9 years. It has also caused more problems for me than the MG ever has. I have developed Osteoperosis, Purpura, Prediabetes, Night sweats, Sever bruising and skin tearing, My hair has fallen out, my teeth have been damaged, i have gained over 80 lbs (after having lost 195 lbs and keeping it off for over 5 years), insomnia, diarrhea, high blood pressure, migraines, moon face, buffalo hump, steroid induced cataracts, depression, mood swings, and i have compression fractures and herniated discs up and down my spine. I have also been on Cellcept, Azathioprine and I was put on Gammagard IVIG one year ago every 4 weeks. My eye muscles felt stronger, but when i attempted to reduce my prednisone, my double vision came back. After a year i was put on Vyvgart. I believe this may have worked as i could feel the difference, however i only received the first two (out of 4) initial doses and then i had to move out of state for personal reasons. For now, i am still on 15mg of prednisone daily and 180mg Mestinon ER. My double vision has not come back, but i am slowly dying from the prednisone. Unfortunately this seems to be the only combination that works for me (although it also sometimes doesnt work for me). All i can say is that if you get put on prednisone, be sure to get off of it as soon as possible. It is a horrific drug and long term use will wreak havoc on your body. The treatment is worse than the disease.