Bulbar MG improvement in breathing not in swallowing
 

I was diagnosed in February with Bulbar MG and I have had improvement with Mestinon, prednisone, and CellCept. I was started on a low dose of steroids and had them increased to 60mg a day about 2 weeks ago but my gag reflex hasn't returned and I am still choking on liquids at the end of my dose of Mestinon. Has anyone gotten any improvement from plasmapheresis or IVIG? All of my blood work was negative for antibodies. I am 44 years old and have Hashimoto's thyroiditis. The MG showed up after a bout of bronchitis and treatment with Biaxin. I am still working full time and going to school and raising 2 teenagers. Some days are a struggle. Also, the medication makes me so sweaty! I am all ears for tips and advice.

Thanks,
Rachel

Hi, Rachel. Mestinon (pdf below) can possibly make you sweaty, but I would suspect the Prednisone. Is there a reason why the Pred was increased so high? Or were you talking about Mestinon when you said 60 mg? It is nearly impossible to withdraw from steroids. And an increase in steroids can make MG temporarily worse.

Going to school and raising two kids is rough for healthy people! Medications don't necessarily put you back to a normal state. We have to manage activities with rest.

Have you spoken to your neurologist? Is that person an MG expert? I'm really surprised that you are on all of those meds with negative antibodies. Did they do any other tests? Now, if you have the antibody tests again (AChR, MuSK, or LRP4), the results could come back negative due to the immune suppressant you are on. You probably have MG, but they should have made sure of that before giving you all of those drugs.

What does of Mestinon are you on? How often? The drug only lasts about two hours. Adjustments in the dose spacing might help. But you don't want to overdose on Mestinon either, resulting in a cholinergic crisis (too much acetylcholine).

Since your children are teenagers, might they not pitch in to help?! ;) And paper plates are great for when you are worse (no dishes). You really have to look at your life and what you can change to adapt to MG.

Since you were diagnosed in February, you haven't been through a hot summer yet (unless you live below the equator!). You can't allow yourself to become too hot, or MG can get exponentially worse. Cooling down right away if you do is essential.

You could try sipping on cold water between bites of food. You could also try a cool washcloth on your jaw/neck to help those muscles. Managing MG is an art form, and that can take a while to do!

I hope you can find a way to balance all of what you do, and having MG. Please take time for a conversation with your neurologist, and discuss the issues you are having.

Annie

Oops, forgot the PDF!

If you talk a lot, swallowing will be worse. But bulbar usually is too. I'd tell your neuro about that.

Annie

Hi Annie,

I have lots of support from my family so I am doing ok. I am taking 120mg of Mestinon 3 times a day and that controls most of my symptoms. The only thing that has lagged behind is the swallowing and voice problems which is why the steroids were increased. I am not looking forward to a humid summer in Maryland but I am aware that I have to be careful. Thanks for your advice and I am seeing my neurologist on Thursday to discuss things further. The increase in steroids did dramatically improve my shortness of breath. I know it that there is some trial and error involved so I guess we will keep plugging away. Thanks for your help.
Thanks,
Rachel

At 120 mg, you might be flooding the neuromuscular junction with too much acetylcholine. 110 mg is "normally" the max. Please talk to your neuro about going down to 90 mg. and taking Mestinon more often during the day. That higher dose might be affecting your throat muscles.

"Newbies" tend to go into a cholinergic crisis when they first have MG (too much Mestinon and acetylcholine). They can also go into a myasthenic crisis (not enough acetylcholine) before they are diagnosed and treated.

Mestinon kicks in after about 30 minutes. The drug wears off about 2-1/2 hours after taking it. So we have about 2 good hours of use.

I take the drug every 3 hours (sometimes sooner) around the clock. Yup, MG wakes me up.

If you drink coffee, that might affect the dose as well. Caffeine is a cholinesterase inhibitor and can cause an overdose of acetylcholine in combo with Mestinon.

I hope you have a good conversation with your neuro!

Annie

Your symthoms are almost like mine, I've had a crisis in April of 2015 and was hospitalized for 8 weeks...long story short is now I'm on Mestinon 6 doses a Day as such, 7am 120mg / 10am 120mg / 1pm 120mg + 200mg Imuran/ 4pm 60mg / 7pm 60mg and last dose before bedtime Mestinon SR180 and every 3rd week I do 80g of IVIG and have been maintaining a descent life style, IVIG for me is my BOOSTER juice when I get near my next treatment I tend to have more symthoms from MG especially my speech!!!

As for your sweatiness it's the Prednisone, when I was on my highest dose "60mg" daily I'd be Sweating Bullet's!!! It was awful I'd get so mad because I'm bald and the sweat would get in my eyes all the time...it took me a year weaning off they do a WHOLE LOT of side effects the quicker you can get off the better, the MG effects vs side effects of Preds for me where worth it. Are you on any kind of IMMUNE SUPPPRESSENT like Imuran or Celcept which seem to be the most commonly used?

What use to help me even more was plasmapheresis every week, I did 84 in all from the time I was in the hospital and as an out patient and had to stop because of my red blood cells being out of wack and other issues, I also got shingles because of mmy Immune system getting to weak and that's when we switch to IVIG, it's not as effective but my blood work all got back to normal and feeling descent. what also has helped me a lot is B12 and massive dose of Vitamin D3 10ui/day.

I'm back to work 5 days a week 6 hours a day, also try to get at least 8 hours of sleep and try to cut down on STRESS!!!��

This is my "Cake mix" that seems to be keeping above water so far!

Good Luck