Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hey all,
I've thankfully not been on this board in a few years. Once I got on prednisone, things improved and I started taking less and less over the last 2 years. Last week, I was on 30mg every other day and starting to think "wow, maybe it's gone?" because I so rarely felt even the tinge of symptoms.
That has unfortunately changed. Over the last week, I've noticed my eyes getting really tired again, my mouth stiffening up, and my throat closing a little- that weird swollen feeling that causes speech issues. It's not too bad so far, so I'm not freaking out too much and just saying "ok, time to take more prednisone." I've gone up 10mg every other day and I hope that helps.
Curious though, if anyone has ever had any issues with fluconazole, which is an anti-fungal? I got a really bad rash that I stupidly ignored and have been on a few medications since summer to get rid of it. I started taking this one about 5 weeks ago, so the timing doesn't quite line up, but still- this is a new drug in my system and I can't find anything online about it interacting badly with mestinon or prednisone. 1 site said to avoid fluoroquinolones if you have MG, and that seems to be an anti-fungal, but I can't tell if fluconazole is a fluoroquinolone.
I'm seeing my neurologist on Tuesday but he's an idiot, so I figured I'd ask here. A lot of people on here are very helpful! I'm leaning towards immediately stopping this drug even before talking to my dermatologist. The rash is pretty much gone, so if there's any chance that this is causing a flare-up, then bye bye fluconazole.
My bigger concern is your attitude about your doctor. It is wonderful having a doctor you trust. you like. Your doc might work today as you would like but in a crisis I would think it would be in your interest to have a doc you trust. Maybe you should find a doc
You going to 30 is most likely the curprit. Might just be too low for you. We taper down until it doesnt work. My breaking point was 7 for years. Everytime I went lower than 7 I aways got symptoms, had to go up a bit, and back to 7.
This summer I had some real problems. So unfortunately I have been at 60. Never again....I hope. So i am headed down in my taper now.
@annkemp: I agree, but I don't have health insurance so trying to find another doctor is just too much work and too expensive (for example, this neurologist can tell I don't like him and I think he knows he's a bad doctor, so he actually suggested I go see another one at Tufts medical center in Boston- a huge, highly regarded hospital. The person I met there was awesome- he talked to me for an hour and I was blown away at the difference in how well he paid attention to me and seemed to care. Then he charged me $750 for that conversation (this was when I was insured so I wasn't expecting any charge) so I've never been back.
Unfortunately, I'm in a "whoever can get me the meds that help me for the cheapest" situation.
I may make another post because I now believe this is just my first spike in symptoms and I'm looking to blame anything but the MG itself just because everything was so good and getting better for the last 2 years.
In your experience, how long does a taper up take to work? I was on 30 every other day and I've now jumped to 40 every other day. I've only had 40 twice now and yesterday I seemed way better, but not today. I'm going to give it a few more tries with 40 and then I guess jump to 45 or 50, but curious what your timeline has been when you've had a spike?