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MG and chest pains
I’ve been diagnosed one and a half years ago (first symptom diplopia, then ptosis).
I had a positive AchR blood test, repeated after a year or so, also positive. The EMG test done as well at the beginning, but it was pretty inconclusive, the neurologist said that they would not have been sure I she’d have diagnosed me with MG, without the blood test. Cold patch on low eyelid also worked.
Initially I was put on Mestinon 180SR, which helped with energy. I guess that was also confirmation that this was MG.
After a couple of month I started getting chest pains. I went through various cardiac tests, up to ultrasound under stress, and no problem found.
Eventually I start noticing the chest pains coinciding with taking the Mestinon. Pointed that out to my neurologist, and even though they never heard of this problem, they agreed to switch me to prednisone.
I stopped taking Mestinon altogether.
The cardiologist by then thinks that I probably have vasospastic angina, so I’m on amlodipine and nitro patches to control that.
The prednisone eventually gets the flare under control (max dose I got 45mg), and I start tapering back as per my neurologist schedule.
As my flare subsided, I eventually I started tapering down amlodipine and patches mainly because of side effects, and still the chest pains are getting less and less.
After a couple of months I am amlodipine and nitro free, and no chest pains. Prednisone is also at zero a few weeks after that. I saw the neurologist after four symptoms free months, and she was thrilled with how things were going.
Then a new flare hit about a month ago, this time with almost entirely bulbar symptoms, though the flare started with some ptosis and diplopia, the ocular symptoms have remained minimal so far.
So I am back on prednisone increasing 5mg every 5-6 days, and at 20mg I start noticing the occasional weak angina.
Pain a bit more frequent at 25mg, but I decide to stick with the schedule. The day I go to 30 (yesterday) I got at least 30 episodes of angina, and took my nitro spray twice.
I talked to the neurologist nurse, which advised going to ER ASAP, which is where I am typing this. She also recommended stopping increasing the prednisone.
The problem is that now I have no idea what is going on. Not uncommon I guess for an MG patient. I was so sure that Mestinon was the bad guy in my story, and noted a correspondence between takin the pill and getting chest pains, but now I am thinking prednisone might also be bad for me.
Imuran is in my future according to the neurologist, but getting over this flare is job number one, hence the ER trip.
Sorry for the wall of text 😀
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