44/365 – Left red faced

The warnings for medication side-effects can be terrifying and the drugs people with myasthenia gravis are put on are no different. We are given lots of warnings about all the unattractive and frightening things that could happen before treatment starts – swollen by steroids, cancer-ridden by immunosuppressants, excessive saliva, acid reflux…the list goes on and on.

I’ve been quite lucky so far in that I’ve never been on high enough steroid doses to get the ‘moon face’ look that the swelling creates and the main side effects I’ve felt have been mildly uncomfortable. However, one that was never mentioned to me and took me by surprise the first time it occurred was the fact that after one or two alcoholic drinks my temperature soars and I go bright red.

I’ve never had alcohol flushes so when I started to feel really hot the first time I had a few glasses of wine while on medication I was surprised. When I went to the bathroom to check what was going on, I was shocked to see my cheeks and chest looked like they were covered in burst blood vessels. It was not only uncomfortable as I was dripping with sweat but also embarrassing in the middle of winter.

It has consistently happened since then – another sexy part of having myasthenia gravis – and this weekend when I went to watch the rugby with friends my face was the reddest I’ve seen it in a long time (as pictured).

I’m not sure if this is a common side effect, but it’s been a consistent one for me. Thankfully it tends to pass after a few hours so I’m not left with tomato cheeks all night. In today’s photo I’ve captured the OTT rouge look, which I normally try to hide from cameras.

6 thoughts on “44/365 – Left red faced”

  1. Yes I get the same thing which has made me practically tee-total over last yr unless I’m having a few vinos hidden away at home! Bizzarely have just got back from wk end in Berlin where I decided not to care if I was the reddest in the room and drank to my hearts content- and didn’t go red!? Def made the most of it! Think it’s the mestinon and maybe how long you have it before drinking. Or the quality of the drink ? I’m not sure. However we still have to make the most of our lives and still live them to our fullest pink cheeked or not!! 😳

    1. Thanks for your comment Annie – it’s good to know I’m not alone. How strange that you didn’t get it in Berlin – have you found different drinks bring it on more than others? What makes you think it’s the mestinon?

  2. I find wine tends to cause it more than any other alcoholic drink. I don’t drink often as I’m on anticoagulant, but something I found interesting was a friend of mine (who worked as a Landlady and dealt with ‘high quality’ wines) told me when I said I found wine made me need to use my inhaler – that it can be pollen related! Apparently, grapes (or the vines they are from) can cause the same symptoms as hayfever! I’d never given it any thought, but she suggested checking if any particular ‘years’ were better than others. For example, a wine made in 2010 may cause a reaction if hayfever was particularly bad in that year, so try 2009 etc to see if that’s better. I don’t know if there’s anything in this, but I have found I react less to earlier wines!

    Funny lot eh?

  3. After one glass of hot whiskey last night, to try and help with my flu!, my face was bright red, more than I’d seen before, I was burning up!🙈Chest and tops of shoulders and back were slightly red too,blotchy.
    When I do go out socializing, the same thing happens, but I don’t notice as much as my makeup covers it up somewhat 😊
    But I think its now time to give up the alcohol for awhile, as I don’t think its good for us while taking all this medication and especially the way we are reacting to it! But yea I definitely think its the mestinon!

  4. This happens to me too when I drink – especially during the last year or so. I was diagnosed with MG 12 years ago, but was in remission for more than 6 until 5 years ago. I never have been a regular drinker but since my symptoms came back (generalized – started ocular) I started drinking even less because I never know how I’m going to feel and sometimes it just isn’t worth it. Sometimes I get so tired and feel like I’m in a fog and I get extreme double vision, which is not fun in a social situation. Other times I have had too much to drink and felt fantastic the next dayb- even needing less mestinon! I just never know. But, now I have the added embarrassment of turning deep shades of red sometimes when I drink (red wine especially). I never knew if it had anything to do with MG, or if I’m just getting old – lol (I’m 34). I know my hormones are all wonky too… So that may have something to do with it.
    As a note, I only take Mestinon and haven’t had a thymectomy, so those can’t be factors for me.

    1. Thanks for sharing that and sorry to hear you get those rosy red cheeks too. Interesting that it’s mainly with red wine – I find I always get it with that so have been drinking it less and less. Wish I had your discipline – definitely affects my MG but also hard to avoid with the London lifestyle (excuses excuses)

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