[dl4plans]

Hey fellow MG suffers, I was just diagnosed a couple of weeks ago. A bit relieved to final have an answer to my symptoms but still trying to figure this out. Started on Prednisone and Pyridostigmine. Also had a CT scan which showed some abnormalities of the Thymus and have a consult with a surgeon this week. Feel like things are under control but don't want to get complacent.

One question my neurologist seems to be a bit fuzzy on. He wants me to stop drinking for now which I have done but God I miss my Jack Daniels at the end of the day. Not a heavy drinker but like to unwind with one after work. Any thoughts? Not looking for anyone to give me permission to have one just want to hear of others experience on this topic or general thoughts as I start this journey.

Thank you

[Jomar]

I think Drs might have a concern that pts may drink/smoke more than than they admit ....I don't know if one drink might interact with any of your meds..??

There are med interaction checking on sites like Drugs.com | Prescription Drug Information, Interactions & Side Effects
- you can put in all your meds and click to finds any interactions , and alcohol should be included in the results if it is an issue..

[mrsD]

Alcohol inflames the stomach lining and may cause gastritis.

Prednisone also does this and may lead to ulcers.

So risk of damage to the GI lining may occur when both are used at the same time.

[AnnieB3]

dl4plans, Welcome to the forum!

I'm a "Jack" lover as well, but I can't drink it.

What alcohol does is to bind to the acetylcholine receptor (among other ones) and reduces the amount of acetylcholine one can get to the muscles. We already have a reduced amount, so that is not a good thing!

Drinking at night can also cause someone to not breathe well while sleeping, wake up choking, or wake up unable to breathe. It's quite scary and dangerous!

Even if I try to have a sip of champagne, for example, for a brunch, the same thing happens. Drinking late in the day is even worse.

Mrs. D already pointed out the effects on the stomach, which is made worse by Prednisone.

Did anyone tell you how incredibly difficult it is to get off of Pred? Many MG experts now only use it as a "boost," if you will, when someone has a MG crisis. It can cause so many other health issues. So you end up with MG plus other problems!

Also, if you do have cancer, having Pred is not a good thing! What if you have to do chemo or radiation? That on top of the Pred would make you a high risk for infections and other issues. It's hard on the kidneys/liver as well. If I were you, I'd have another discussion with the neuro about trying IVIG as a stopgap measure (instead of Pred) until they know if you have a thymoma.

No treatment that suppresses the immune system is without risk, but the other ones are easier to withdraw from (i.e., Imuran).

There is a lot to learn about MG. Home is a good place to start.

There are drugs that are contraindicated in MG as well.

Stay out of the heat (and cold weather) because that makes MG exponentially worse. Stress, infections, lack of sleep, etc. can make us worse as well.

Some people have a thymoma. Sometimes once it's removed, MG will get better. Though, not all the time!

If you have any questions, just holler!

Annie

[dl4plans]

Thank you so much for the prompt replies. Much to consider. Comforting to know there's a way to reach out to others. All the best!

[brandonc]

Originally Posted by dl4plans

Hey fellow MG suffers, I was just diagnosed a couple of weeks ago. A bit relieved to final have an answer to my symptoms but still trying to figure this out. Started on Prednisone and Pyridostigmine. Also had a CT scan which showed some abnormalities of the Thymus and have a consult with a surgeon this week. Feel like things are under control but don't want to get complacent.

One question my neurologist seems to be a bit fuzzy on. He wants me to stop drinking for now which I have done but God I miss my Jack Daniels at the end of the day. Not a heavy drinker but like to unwind with one after work. Any thoughts? Not looking for anyone to give me permission to have one just want to hear of others experience on this topic or general thoughts as I start this journey.

Thank you

to start off....everyone is different so my deal with mg might be different than yours. that being said i can drink a few without having any problems at all. my mg is well under control though. your doctor probably wants you to stop for the time being so you can get used to new medicines like the prednisone. drinking isnt the best thing in the world for your immune system so adding that to a new influx of pred is prolly his concern

[Kimo]

This might not be what a doctor wants to hear, but here goes anyway. I have had MG for about a year. Started out needing just Mestinon and progressed to needing Prednisone with some Mestinon. I drink a lot, as in more than 6 drinks a day. I have PTSD and it's a problem for most of us. I have never noticed any problem or increase in symptoms from using alcohol, in fact if anything the opposite. I know that sounds weird, but it's true.

That having been said, I have never had a stomach problem with taking aspirin. My doctors say I should take something else because of possible stomach bleeding and I just say I'm 71 years old and have been taking aspirin on a regular basis for over 50 years. Do you really think something is going to change now?

Just my two cents.

[Poetist]

Drinking at night can also cause someone to not breathe well while sleeping, wake up choking, or wake up unable to breathe. It's quite scary and dangerous!

Annie, I don't drink at all hardly, so that's not a factor. However, I have problems breathing, when I'm sleeping. I wake up choking or unable to breathe.

OMG!!!!

Can you tell me more about this, because you've described what I feel to a tee? The only thing is I have this problem, when I lie on my left side. It seems that my scapula muscle is fighting a losing battle and gets heavy. A few days later, I can still feel the sore spot where I feel the twitching/giving out of the muscle. This has been going on for over ten years, and now, I feel the sore spot. It seems that spot on the muscle took a beating over the years. Mind you, this sore spot isn't painful or very sore, but if I apply deep pressure on that spot, I can feel the sore spot. It just feels as if it is overworked.

[ErinBear]

Dear Poetist,

I know you wrote to Annie, but I hope you don't mind if I respond also. I hope you will talk to your doctors about your problems with breathing at night. I had this problem also, and it is related to my generalized muscle weakness. It affected my respiratory muscles. I have some problems breathing during the day, which fluctuates with how I am doing. But it is more prominent at night, because when you lie down, it can make it harder to breathe if your respiratory muscles are weak. I see a pulmonologist due to my breathing issues, and underwent a sleep study. He prescribed a BiPAP/AVAPS machine, which helps me breathe overnight (it is similar to a CPAP machine). It has really helped. It may be possible that you could benefit from something like that also if you are having trouble breathing at night. Also, if you ever have trouble breathing during the day, you can use the machine to help support your breathing during the daytime hours. Contact your doctors and ask them for an appointment soon. I know that's a very uncomfortable feeling, and there is something that can be done to help you. Meanwhile, if you sleep propped up on pillows, it can help on the short-term, but do contact your doctors.

Take care,
Erin

[Poetist]

Thanks, Erin.

FYI: I had a pulmonary function test over the years, and it shows that my breathing is better. Of course, I'm not lying down, when I take it.

Plus, I have had sleep studies. No problems. I sleep like a baby w/that thing on at night. LOL.

Anyway, I feel as if it's muscle weakness that is causing this. As a remedy, the doc told me to take 180 mg of Mestinon at night and follow up with a 60 mg in the morning. It works for the most part.

However, the other night w/in 2 hours of taking 180 mg of Mestinon, I felt my torso, especially around the chest area, feeling as if was being weighed down, so I took 60 mg of Mestinon. There were no problems at night.

Does this sleeping issue mean weak muscles? I just need to hear from people out there, because the docs can't pin point any other cause.