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...

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copperzincbear 01/20/2018

As you know, the H3N2 flu has been going around the United States, and I was wondering what we should know if we contract it.

For instance, is it OK for us to take oseltamivir (Tamiflu)? I've heard that peramavir can worsen MG: http://www.myastheniagravis.org/mg-and-drug-interactions/

Has anyone gotten it while they are on immunosuppressants/steroids? Has anyone had complications? What can we expect? Should we instantly go to urgent care/ER if we think we have it?

I personally have only had ocular symptoms - do I need to worry about respiratory MG symptoms?

(I'm a little freaked out because I went to the bank to get some change today, thinking that the place would be practically abandoned as usual because no one actually goes to the bank window anymore, and the teller had a sore throat and told me he was sick and "had the flu" "last week" (!). This was after I handled the roll of quarters and pen and paper he gave me, and he handled my driver's license. Anything you could tell me about having it or what to do would be appreciated. Yes, I asked about this in August, and no, I didn't get the flu that time.)

wskimball 01/22/2018

Hey Copper and first of all don't panic. You do not need to add stress to your environment. I asked two neuro's about the flu shot and both said get it. We do not need the flu. I too have to worry about the breathing issue as I am also COPD and have CHF along with the MG. I had no noticeable reaction to the shot. Now since then I have had a cold and I am on the verge of another one. I am taking Guaifenesin 1200mg two times daily and some cough syrup with expectorant every 4 hours and it seems to work ok. I have noticed nothing is effecting my MG.

copperzincbear 01/29/2018

Hello - I got my flu shot back in October. People are getting this flu despite being vaccinated, however, so I wanted to know what to do in the case that I got the flu. I live in a crowded urban area, and take public transportation, and it's difficult to stay away from infected people completely.

Nanosecond 01/29/2018

Copperzincbear, I sympathize. I too live in a crowded urban area and take public transportation. It is a pain, but when I take the bus, I wear medical gloves and a mask (in honor of flu season). Food shopping I wear gloves and have the mask in my coat pocket just in case. I always have a small bottle of hand sanitizer in my coat pocket. At least while this terrible flu is a problem, I try to stay away from crowds and avoid restaurants.

I would also like to know what we should do if we catch the flu. I am on CellCept 2,000 mgs/ day.

PeterL 01/30/2018

Hi - new here. Have MG, diagnosed 1998, very stable until this month - just had a dose of Flu. At least assume it was Flu as it came with the usual symptoms together with bout of MG style tiredness which I am still trying to control by adjusting the levels of Mestinon I take. Currently, around the 4x 60mg / day. Last month it was 30mg/day! I had the Flu vaccination last October but probably for the wrong strain. My left eye has also 'popped' (that's what brought me here earlier). Agree with the previous comments.

copperzincbear 02/05/2018

Thanks for the advice. I don't really do anything but wash my hands a lot and avoid touching my face. I was thinking of getting a mask to make people stay away from me by making them wonder if I'm the one with the flu but I'd get paranoid about touching it and then putting it on my mouth. PeterL: Are you on steroids or immunosuppressants? I'm on azathioprine 200 mg.

tashariot 02/08/2018

I got the flu earlier this year and had to take tamiflu as I was bed ridden. It was like giving my MG a taser. I’ve had the worst flare up since and am on the highest dosages I’ve ever been on and there is no end in sight. I highly recommend NOT getting the flu and if you do, suffer through it. Don’t do what I did in attempt to go back to work.

GrnEyedLdy 02/26/2018

First ask your doctor tho check the literature of meds to avoid, and which are "use with caution", since this year's flu is provoking bad body aches, headache and chills, and sometimes that's for days before the congestion gets going. The pain and misery-factor stress alone would probably worsen MG for many, if not most.
Med - congestion-wise the first thing I'd do is drink 16oz water every time I woke up, decide if more testimony would help, and take plain Mucinex, all to keep any mucus thin and as easy to clear as possible. Then I'd swallow a spoonful of honey and sleep all I could. Half the goal would be to have thin mucus so I could clear it in 1-2 coughs, with no coughing that's not clearing mucus.

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