Treatments for myasthenia gravis: Are there any side effects?

Hi, I have today been diagnosed with myasthenia gravis, I have suffered with condition since mid November last year, but only received diagnosis today. I am scared as I already have debilitating conditions to deal with, and now this. I am due to start treatment tomorrow with tablets, forget the name.

Hi, I'm currently waiting a diagnosis as my eyehood dropped suddenly early December amd my vision has been blurred/double at times since. After ruling out stroke/Bells, eye/brain tumours I am niw waiting blood tests (antibodies MG) due back end February. I'm totally exhausted through not sleeping and a back up if breast cancer radiotherapy end last year but trying to fight against it rather than giving in.

What else can you advise while waiting?

@Shazz2rs @swright570 I'm sorry you're both going through what sounds like a lot health-wise, but I'm glad to know I'm not alone here. Did you get your results back?

As for treatments, I've been given pyridostigmine and whilst I believe it's helping my MG, it makes me feel terrible. I'm constantly feeling sick to my stomach and sometimes I even have terrible stomach troubles. I'm constantly in the loo. Has anyone else had this?

@MaggieMG

I was given Pro Banthine tablets to counteract the stomach problems, they do work, but I certainly have had a change in bowel habits, keep chin up please!

@Shazz2rs

Hi, since November when MG BE started, I've either double vision or eye won't ope, I struggle to chew food, so on soup and pot noodle, breathing poor, leg cramps are horrendous, fatigued beyond belief. Lost hearing in left ear.

I try to keep spirits up, and my heart goes out to you, it's hard, but together, we will kick this condition. Stay strong, believe, and keep chin up.

Hi all, i was diagnosed with Generalised myasthenia Gravis in Jan 2022 even though i knew i had it but by time i got to see the neurologist it was Jan 2022. He took one look and diagnosed me there and then. the symptoms i have are

1-drooping eyelids

2-fatigues

3-jaw problems

4-trouble chewing and swallowing

5-weakness in my arms and legs

6-chronic back pain- i do have an underlying back pain but this has made it a lot worse

7-neck pain and dropping of the head as neck wont hold it upright.

there may be a couple more but those are the main things i suffer with. it has totally changed my life, i cannot walk properly now and have to sit in a wheelchair, not been outside for 4 months , lost a partner i think it put her off and she didnt want any responsibility and the thought that i cant even carry my own meals and asking her was a big deal she upped and left , prior to that we were together 7 yrs i did absolutely everything for her, run erands, cook, wash the dishes, clean up, do the shopping, she wasnt left to do a thing and as god as my witness i swear that is the truth, and this week she told me it was over. to say im in turmoil is the biggest understatement ive ever said.

@jonscfc

Hi, thank you for sharing!

I am so sorry to hear your partner left you. It does sound very sad :/ Hopefully you are feeling better about it now that some time has passed.

Take care!

Courtney

I take pyridostigmine (Mestinon), prednisolone and propanthaline for Ocular / pos general MG.

the side effects of mestinon are largely gastro related- loose stools, wind also urinary urgency. The propanthaline helps with this but they can cause a very dry mouth. Prednisolone by comparison is a different matter - sweating uncontrollably sometimes at higher doses. I was on 40mg daily at the start, weight gain. I put on 35 pounds in 6 months and developed type 2 diabetes. The dosage is dropping now - I’m done to 14 mg and dropping by 1mg a month. Hopefully moving on to a steroid sparing agent soon. I was also diagnosed with severe obstructive sleep apnoea and given a CPAP which has helped with reducing daytime breathing issues and strangely the urinary urgency as well though this may be due to loosing weight as well. The diabetes is now also under control and I am now classed as non diabetic.

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What can you say about your treatments?

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Thank you!😉