- This topic has 17 replies, 16 voices, and was last updated 1 day, 18 hours ago by
paul spychalski.
-
AuthorPosts
-
-
August 30, 2021 at 3:00 am #16959
Jodi Enders
KeymasterLast year, my boyfriend and I went to a restaurant months after quarantining for my health. It was a spacious place that I felt comfortable at, and it had been months since I turned 21 and had been unable even to order a drink.
After one margarita, I got up to go to the restroom, feeling and walking fine, and then halfways there at the entrance of the restaurant, I blackout for a moment and fall to the floor. I haven’t and do not plan on taking even a sip of liquor anytime soon!
I was on high doses of prednisone, mycophenolate, and pyridostigmine. It was only around three months after my first MG crisis that led to a diagnosis.
I am curious, have you had complications with alcohol consumption? Do you believe this was due to your MG complications? What was your treatment plan when you couldn’t handle alcohol?
-
August 31, 2021 at 11:09 am #16975
FrancisW
ParticipantAlcohol is a definite problem. Any amount beyond a sip causes my MG symptoms to immediately appear. Recently, I have turned to trying some alcohol free beer. Not a fan yet, because pre MG my preference was always wine. Oh well.
-
January 26, 2022 at 5:03 pm #18142
paul spychalski
Participant1 drink might be ok, 2 might be too many. It might have happened if you were having an MG Crisis. This is from a MD site:
Myasthenic Crisis Symptoms
A myasthenic crisis may come on slowly or very quickly. Difficult or labored breathing is the main symptom. You may notice that your breaths are shallow or your muscles seem too weak to move air in and out as you try to breathe.Other possible symptoms:
Saliva builds up in your throat.
You can’t swallow.
Jaw or tongue weakness.
Nasal tone to your voice.<<<<<<<<<< ( I had this happen and didn’t know what was happening.)
Your airways feel blocked-
May 14, 2022 at 3:05 pm #19175
paul spychalski
ParticipantThe Nasal tone to your voice is scarry, that happened 3 times to me. When it happens my wife helps me to bed, after a short nap, it’s like nothing happened. I’m wondering if an MG crisis comes on if you have 1 or 2 drinks and are tired???
-
-
-
September 1, 2021 at 7:40 pm #16987
John Gore
ParticipantIn the last few months I’ve noticed that just a few sips of beer or wine makes my breathing labored. Breathing returning to normal after about 15 minutes. Currently have just ocular MG taking pyridostigmine. Needless to say, no more beer for me!
-
January 27, 2022 at 4:43 pm #18155
paul spychalski
ParticipantI drink O’Doul’s at times because it is only 0.4 percent Alchohol and tastes good. I have all the MG problems and that helps.
-
-
September 1, 2021 at 7:54 pm #16991
Amy Cessina
ParticipantI have a drink from time to time. Just white wines, or Prosecco no hard liquor. I’m not sure about the MG symptoms because the dizzy hits me first. I use those smaller cordial glasses so no one can pour me a huge glass. Saves the explaining.
-
September 1, 2021 at 8:30 pm #16996
Thomas Lee Clark
Participant<b>I do not drink alcohol. I come from a long family line of alcoholics but I love the taste and smell of beer. Bud now has a zero which is better than anything I have tried. </b>
-
September 2, 2021 at 3:41 pm #17010
Carol Youngman
ParticipantI had the same reaction with one glass of wine. At first thought it was a fluke but after the second time, when I felt like the wicked witch melting gave up the spirits.
-
September 3, 2021 at 8:00 pm #17039
ChrisM
ParticipantI like the occasional glass of wine but need to keep it to that, and can feel a definite difference the next day. So moderation but not total abstinence.
-
September 4, 2021 at 2:19 am #17053
Marvin Yudenfreund
ParticipantMS is a snowflake disease. I have a 12 oz homebrewed beer every night, a glass or two of wine with a celebratory dinner, and a shot of tequila or Scotch on occasion. The only problem I’ve had was a bit of insomnia after a couple of glasses of wine.
-
September 6, 2021 at 12:09 pm #17074
Rick Federmann
ParticipantWhen I was on Pyridostigmine (Mestinon), even a few ounces of light beer resulted in total lay-on-the-floor, can’t-speak exhaustion.
Now I am on Mycophenolate (CellCept) and I can tolerate a glass of wine.
-
September 7, 2021 at 3:11 pm #17076
FrancisW
ParticipantInteresting. Thanks for sharing. Do you also take Prednisone ? Presently, I am not.
-
September 9, 2021 at 2:28 am #17112
John Ulfelder
ParticipantSince I was hospitalized for the onset of my MG in March, 2021, I have not had anything alcoholic to drink. Currently I am taking both mestinon and prednisone for my MG. Although I was a regular drinker before MG (beer, wine and liquor) I have no desire for alcohol at the moment and based on the comments I am reading I should stay away from it!
-
September 13, 2021 at 2:31 am #17171
KATHY Lopez
ParticipantI don’t drink much, however occasionally a glass of wine or margarita when we go to dinner. I was diagnosed 11/2019 and on MESTINON. Approximately 6m ago after having one glass of wine 5oz? I went to restroom and halfway there out of breath, walking off balanced like I had 10 drinks, face and neck flushed. My son said it was like I had Asian Flush, but I’m Caucasian After several times thinking it was just a quirk, I now know for whatever reason I can no longer drink alcohol . I was never a huge drinker in my later years, but just one other thing that’s eliminated
-
September 15, 2021 at 9:06 pm #17198
Bill Wheeler
ParticipantI have been on meds for 13 months, Pred [10 mg] and Mestonin[60mg] I can tolerate a wine or two but my eye muscles “jump” within minutes of drinking a glass and occasionally my sight clarity is slower to respond for just a few minutes. As I have a strict disciplinary wife regarding my behavior, I am careful about my consumption. I am limited to one glass on occasion and that works for me. Beer does the same thing but a bit slower to react. I find that NA beers replace alcohol and I like Clausthaller Dried Hop, Becks and St. Pauli Girl. Also drink NA wine. Avoids problems!
-
November 11, 2021 at 11:18 pm #17632
Sue
ParticipantI have not had issues with alcohol other than flushed face. I am taking imuran, predinsone and pyridostigmine.
-
November 12, 2021 at 8:24 pm #17641
Jennie Morris
ParticipantMestinon with alcohol causes me to have flushed face and neck but also gives me a terrible metallic taste. Not worth the trouble. I get occasional muscle twitches and weakness but I’ve only had 3 drinks in 10 years – coinciding with the few times I was able to stop Mestinon. FYI – 40 years from diagnosis and it doesn’t get any better. So designated driver for me!
-
November 26, 2021 at 11:16 pm #17723
Sharon Haw
ParticipantMy face flushes and gets hot to touch immediately from alcohol but it subsides quickly. I rarely drink and 1 glass of wine is my limit but even that gives me insomnia that night. My neurologist said to avoid alcohol and coffee. I’m only on Mycophenolate (CellCept) now. The flushing was worse when I was on Prednisone and Mestinon when I was first diagnosed in March 2019. I had to stop taking Mestinon because after 3 months, my eyelids twitched so much, I could barely see to drive, and I had slightly elevated liver enzymes.
-
January 8, 2022 at 12:35 am #18009
Mike
ParticipantI’m taking 240mg pyridostagmine and have the equivalent of 2-3 beers’ alcohol per day. So far I haven’t seen a correlation between when and how much I drink and change in my usual MG symptoms.
-
-
AuthorPosts
- You must be logged in to reply to this topic.