Duration of Ocular MG Flare Ups?

By 09telecaster

1 min read

I've got ocular MG (confirmed by serology in Jan 2023) and have had several flare ups over the past year and a half during which my symptoms (particularly diplopia) are much more severe and frequent.

Unwanted side effects

I have been using prednisone steadily for the past 15 months and it has been quite effective, but I'm currently down to 5mg/every other day and want to discontinue it altogether because I don't like the side effects (the worst being a ~ 20lb/9Kg weight gain).

Flare up causing me to increase medication

However, a couple of weeks ago I began to experience more issues with diplopia and ptosis and have been trying to manage it by better consistency with pyridostigmine dosing - 60mg at a time. I ramped up to 120x3-4/day but that didn't seem any more effective and I was having some minor GI issues.

What's your MG experience?

Anyway - to make a long story short: I'm curious to see what others' experience has been in terms of how long these flares last if not treated with prednisone. I'm trying to balance my ability to function for driving, refereeing soccer, playing pickleball, etc. with the negative impacts of the prednisone and wondered what other folks' experience has been.

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davidraymondhunt Member
Hi...I had a stroke to my left eye in Jan.2023...double vision....etc...and was later diagnosed with MG. I had MG crisis in May and started on prednisone, pyridostigmine 60 mg x3...and Mycophenolate 250 mg x2....Prednisone was doing multiple side effects so I weaned off it by Sept. I think you should get off it asap. My environmental doctor thinks my 5 covi d shots caused my stroke...so no more shots...he they flu...etc...My double vision has been corrected by 3.5 prisms in both new lenses...just recently. My internal medicine doctor has asked my neurologist...if I can reduce one of these....will know Friday....Pyridostigimine causes me to have diarrhoea, rashes, and sweats...These are my side effects of it. I think 120 x3-4 is too much for you...try 60 mg x 3....Do you have a neurologist? I do not have flare ups with my eye...but do have other symptoms....difficulty swallowing...choking....shallow breathing...raspy ..change of speech ...weak muscles ...I have a good nutritionist...and she recommends choline (250 mg x 2 twice a day).....to help with the acetylcholine reaction. Good luck!
1. Jodi Enders Moderator & Contributor
 <inline-mention username="davidraymondhunt" user-id="9760658"/> Hi there! Welcome to our wonderful community—we’re so glad you’re here! I want to extend my heartfelt sympathy regarding your eye stroke and everything you’ve been through recently. It must have been incredibly challenging. I’m truly relieved to hear that the prisms have provided some relief from your double vision. Please feel free to share any updates, especially if you receive approval to adjust any of your medications. We're here to support you! - Jodi, Team Member
2. davidraymondhunt Member
 <inline-mention username="Jodi Enders" user-id="4496596"/> Hi! Thank you! I have gone off prednisone and mestinon ..feeling much better as I had so many side effects....Dave
jtcrossen Member
I have the same eye issues, although I have generalized MG with other muscle weaknesses too. I carry an eye ice pack for when my eyes get droopy. I also had my first IVIG infusion and it really helped lower my episodes of eye and muscle weakness. Ask your neurologist about it. It’s been a game changer for me. Best of luck. 
1. Jess.Hall Community Admin
 <inline-mention username="jtcrossen" user-id="8661350"/> thanks for sharing with us! So glad to hear you have found this to be helpful! I hope you continue to find the infusions helpful. Wishing you continued relief. -Jessica (Team Member)
09telecaster Member
Here's an update: I started back on 10mg/day Prednisone two weeks ago and I'm still having symptoms. Not constantly, but enough to be quite irksome. Really - I'm spending a lot of time either wearing an eyepatch or just walking around with one eye shut. I did try Prisms for a couple of weeks, but my double vision is so variable in terms of degree of offset and vertical/horizontal orientation that they weren't very helpful.
CommunityMemberaf03b8 Member
I was diagnosed with ocular MG three years ago and I found (along with the other things you are taking) that Mestinon helped along with consultation with an Ocular Behaviouralist who actually mostly treats kiddies with turned eyes. Prisms were the turning point and now I am free of double vision
1. Jodi Enders Moderator & Contributor
 <inline-mention username="CommunityMemberaf03b8" user-id="9771262"/> We are thrilled you found what works to subside your double vision! Prisms have helped so many! Here is a link about them if anyone reading this is interested 😀 : <a href='https://myasthenia-gravis.com/clinical/prism-glasses' target='_blank'>https://myasthenia-gravis.com/clinical/prism-glasses</a> Jodi, Team Member
2. 09telecaster Member
 <inline-mention username="CommunityMemberaf03b8" user-id="9771262"/> Unfortunately, prisms were only occasionally effective for me because the degree and direction of offset in my double vision is highly variable.
taranaomi Member
Hi. I’m sorry to hear about your flare up. I am also experiencing something similar. For about a year, I have ocular MG (with occasional generalized symptoms) and was diagnosed at 3 years old (I am not 44). I started having extremely bothersome eye twitching in both eyes. It was more than a twitch - my eye lid would sort of freeze in place, half closed and I had no control over it. My doctor put me on mestinon, which I hadn’t had to take since I was a teenager. I hadn’t been on any meds for this as an adult. I stopped taking the mestinon because it caused muscle spasms and cramping in my legs and didn’t seem to be the answer to the eye twitching. The twitching subsided but in the last month, my right eye started to droop severely, often causing double vision. I first noticed overall fatigue that I couldn’t remedy. I was also extremely thirsty (this was all at the high point of summer) and I’ve been under extreme stress for the entirety of the last year. I started taking mestinon again about a week or two into noticing symptoms but haven’t gone above 60mg 3x daily. I tried an extra half pill between the six hour intervals, but can’t say that it made a difference. After finally getting in to see my Neurologist, I’m also on prednisone. I take it once in the morning daily along with my mestinon regimen. I started with small dosing, increasing daily up to 30mg. Now that my symptoms thankfully have been slowly improving I am happy to be staggering the dosage down every three days. I’m at 20mg per day, then after 3 days I’ll step it down to 10mg for 3 days, then 7.5mg for 3 days, and 5mg from there. I have a follow up appointment next week and hope to be able to stop the prednisone at least, if not everything. I’ve also been doing my best to manage my stress, get enough sleep, eat mindfully and focus on nutrient dense foods. Ptosis isn’t as challenging as losing mobility or the ability to breathe, but it is still difficult to deal with particularly from a social perspective. The states and questions and having to preemptively explain my appearance is exhausting. I’d almost rather deal with some of the medication side effects if I knew that my eye would get better. Here’s to hoping that things continue trending in the right direction for everyone in this community. Sending you strength, kindness, and resilience. Take care. -tara 
1. Jodi Enders Moderator & Contributor
 <inline-mention username="taranaomi" user-id="9801012"/> Hey Tara! We greatly appreciate the time you took to share your experience. Despite doctors often turning to it when patients say they experience eye twitching, mestinon can cause eye twitching as a side effect. So commonly, the twitch worsens for people after mestinon. Are you still taking the mestinon and prednisone? --- Ptosis is no doubt frustrating from many standpoints. Here are some articles I think may be of interest to you: <a href='https://myasthenia-gravis.com/living/good-stress' target='_blank'>https://myasthenia-gravis.com/living/good-stress</a>, <a href='https://myasthenia-gravis.com/living/dont-waste-energy-stressing' target='_blank'>https://myasthenia-gravis.com/living/dont-waste-energy-stressing</a>, <a href='https://myasthenia-gravis.com/living/prioritizing-vitamins-minerals' target='_blank'>https://myasthenia-gravis.com/living/prioritizing-vitamins-minerals</a>, <a href='https://myasthenia-gravis.com/living/changes-in-appearance' target='_blank'>https://myasthenia-gravis.com/living/changes-in-appearance</a>, <a href='https://myasthenia-gravis.com/living/choosing-compassion' target='_blank'>https://myasthenia-gravis.com/living/choosing-compassion</a>. --- Have you discussed treatments other than mestinon or prednisone with your doctor? Those are first-line MG treatments, but there are many others out there that could work for you. If you have not, I encourage you to take a look at this article: <a href='https://myasthenia-gravis.com/treatment' target='_blank'>https://myasthenia-gravis.com/treatment</a>. Do you know what MG antibody you test positive for or if you are seronegative? Jodi, Team Member
Jodi Enders Moderator & Contributor
<inline-mention username="09telecaster" user-id="6886466"/> Hey there! It's been a good while since we have heard from you! It is great to get an update 😀 I am so sorry to hear that your diplopia and ptosis have worsened recently. It's understandable that you want to discontinue prednisone due to the unwanted side effects. Have you discussed alternative treatment options with your healthcare provider: <a href='https://myasthenia-gravis.com/treatment?' target='_blank'>https://myasthenia-gravis.com/treatment?</a> Generally, immunosuppressants or biologic treatments are associated with less uncomfortable short-term side effects compared to the amount that individuals commonly experience prednisone and mestinon. --- Many individuals who experience MG flares are usually on some form of MG treatment, making it difficult to determine how long a flare without prednisone or any treatment at all would last. However, based on the initial MG symptoms or flares people experience, these often continue to worsen and persist, with new MG symptoms starting or worsening until the flare reaches the point of an MG crisis: <a href='https://myasthenia-gravis.com/living/flare-exacerbation-crisis' target='_blank'>https://myasthenia-gravis.com/living/flare-exacerbation-crisis</a>. --- Here are some prednisone articles you may resonate with: <a href='https://myasthenia-gravis.com/clinical/prednisone-withdrawal' target='_blank'>https://myasthenia-gravis.com/clinical/prednisone-withdrawal</a>, <a href='https://myasthenia-gravis.com/living/prednisone-coping' target='_blank'>https://myasthenia-gravis.com/living/prednisone-coping</a>, <a href='https://myasthenia-gravis.com/living/prednisone-self-esteem' target='_blank'>https://myasthenia-gravis.com/living/prednisone-self-esteem</a>, <a href='https://myasthenia-gravis.com/living/goodbye-prednisone' target='_blank'>https://myasthenia-gravis.com/living/goodbye-prednisone</a>, <a href='https://myasthenia-gravis.com/living/prednisone-experience' target='_blank'>https://myasthenia-gravis.com/living/prednisone-experience</a>, <a href='https://myasthenia-gravis.com/corticosteroids' target='_blank'>https://myasthenia-gravis.com/corticosteroids</a> Jodi, Team Member