Newly diagnosed with MG
Hello,
I’ve only just been diagnosed with MG after months of drooping eyelid and severe double vision. I’m 35 years old and a lot of the symptoms seem to tie in with me falling pregnant (whether this can trigger it or has just heightened my symptoms I’m unsure). My AcHr antibodies came back at 100+ So extremely strong positive.
At the moment it seems to be predominantly ocular MG with the odd bit of weakness in my arms.
I’ve started out on Pyridostigmine 60mg half a tablet 4 x daily (120mg daily).
My question is- prior to starting the medication my double vision seemed to have really calmed down on its own for around 4 days, I wasn’t experiencing many symptoms at all. I then started on the pyridostigmine tablets and it seems to have flared it up, every day since taking the tablets the double vision has been back. This morning I tried not taking a tablet and everything was normal, I decided to take one at lunch just to see what happened and half an hour later the double vision was back?
Does anyone have any experience of this medication making symptoms worse or do you think it is just purely coincidental?
I would appreciate any feedback as feeling really low and disheartened.
Many thanks in advance.
Natalie Xxx
I would make sure you consult your Myasthenia gravis doctor as soon as possible if you have not yet already and provide an update. I would also avoid rapidly stopping a prescribed dose without a\your doctor's recommendation. The double vision corresponding with the pyridostigmine may be coincidental. Or very could mean your body doesn't tolerate that medication well. Everyone is unique in one's body response to MG treatments and what works specifically for them. It may involve a lengthy trial and error period. I do provide my best wishes that you resolve this vision problem soon! In the meantime, I recommend checking out the following articles on our site related to the topic: https://myasthenia-gravis.com/clinical/examining-mestinon
https://myasthenia-gravis.com/living/driving-considerations
https://myasthenia-gravis.com/treatment/ache-inhibitorI hate hearing you feel down about this, and I don't blame you one bit! I would love to interact in the meantime until you get some answers from your doctor.
I look forward to replying to your possible thoughts on them in the comments.
- Jodi, Myasthenia-Gravis Team Member
Hello
first off Congratulations. I believe you mentioned you're pregnant. Secondly, thank you for sharing your experience. I take Pyridostigmine (mestinon) 60mg tablets too. But I take 2 tablets, 3 times a day, so, 360mg daily for me. That particular medication is fast acting, it takes 30mins to an hr to enter your system and goes away within 4 hrs. It's more for short term relief. You're actually on a low dosage and that could be why you're not seeing any results from the medication.
Do you take any other medications? Along with the pyridostigmine, I take 20mg of steroids and monthly IVIG treatments. Sometimes medications have to be taken in combination with other medications and or treatments.
I was 17 when I was diagnosed with MG and I was 25 when I found out I was pregnant with my son. Being pregnant can cause more stress on your body which can cause some unwanted MG symptoms. I would get double vision and a droopy eyelid a lot when I was pregnant and I would wear a eyepatch.
Most importantly take all the rest you can get. Also, ask your doctor if there's another treatment plan that can help you with your symptoms but isnt harmful to the baby. Best of luck.
- Jazmin (team member)
