Initial Treatent Experiences
As I said in my first post yesterday, I am so thankful for my family doctor. He did not know what was wrong with me, but he did not let that stop him. He sent me for test after test and specialist after specialist until the neurologist figured it out. Now on to the beginnings of treatment which I have to admit has been bumpy.
To start we tried 60 mg of mestonin 3 times a day and that was a god send at first. I could swallow almost immediately. jaw strength was still not great but arm strength at first was good and not twitching. After a week we also added 180 mg of the slow release version of mestonin at night time to bridge the night till my first dose of the quick release version. At the same time I was prescribed Azithioprine because we wanted to avoid a steroid. that did not go well. I I had a bad reaction and ended up in the hospital for a week.
Coming out of the hospital we stopped the Azithioprine of course and started a low dose of Prednisone 5 mg once daily. things went well for another week with the symptoms, but I developed stomach issues with serious cramps and a feeling of nausea frequently. the doctors added a PPI inhibitor Perindopril to calm the stomach. 4 mg 1/day. That did the trick and no more nighttime nausea since then which has helped me sleep through the night.
But symptoms started to return despite the regimen. We increased the quick release 60 mg mestonin to 5 times per day which worked for a while, but then the symptoms crept back in. I don't get many visits with the neurologist so I have resorted to Google while I wait for my next appointment. The quick release version of mestonin is identified as something of a use as needed drug, so I have been adding additional doses. If I do not by the end of the evening I can't lift my water bottle, and have difficulty controling eating utensils.
Stress brings on symptoms. So does too much physical activity. Right now even walking my Yorkie cross dog Chewie brings on breathing issues and muscle trembling. but the big killer for me is the heat. If I spend any time at all out in the sun an humidity and I turn into a wreck. I really have to be careful. I have never been extremely active these last few years but it is ridiculous what activities I used to do that I no longer can.
Google tells me that an "average dose" of mestonin is actually around 10 - 60 mg mestonins daily and that some people need as high as double that dosage. I don't want my dosage to be that high but either I seriously curb my daily activities and avoid a lot of the triggers, or I think I am going to have to increase the mestonin beyond the average dose. My livelihood involves constant user of my hands. I have to be able to type but at least the office is well air coxnditioned.
Is anyone else on a mestonin dose at or above 10 - 60s per day?
Opinions and advise welcome
My first 4 months started out with low dosages and various drugs I had adverse reactions to. Azithioprine worked at first but after about 2 weeks i had an allergic reaction with hives over most of my body (not good). Went on prednisone, 5mg at first then all the way up to 70, by Jan (4 months in) i couldn't speak or drink or swallow without choking. Finally went onto infusion therapy and within 2 weeks I was somewhat back to normal, and able to speak, eat and drink fairly normally. Still severe weakness and limited ability (any strenuous activity would wipe me out). I have been on several drugs which have not worked (trying to get off prednisone).
Good that you understand the stress aspect, I nearly died when a stressful situation caused an MG crisis with 0 ability to breath. What saved me was my cpap which allowed me to force air into my lungs. The dr warned me about stress and the impacts on MG, but I at the time I didn't think much of it, but you sometimes can't control a stressful event, it is just something that happens. Be aware of the impact and have a plan on how to deal with it. I now have a cpap in my house i sleep with and i paid out of pocket to have a travel cpap in my car (just in case).
I am currently taking Mestonin as an infusion, switched to it about 2 months ago, so far it seems to have a similar effects as my IVIG infusions, but I can lift heavier things with the Mestonin infusions than I could with IVIG so it seems to have a better effects. I wish i had done more strength testing prior and post switching from IVIG to Mestonin (also called vyvgart). My infusion methods has me getting it via a mix into a saline bag and I get that once a week for about an hour, then they monitor me for another hour to make sure there is no side effects. It is not a pill format for me.
