Ocular MG
Hi All,
34yo male I have had Ocular MG for about 10 years now. My only symptom is double vision (and its severe). Usually when the bouts of double vision hit, there's no fluctuation in symptom severity, symptoms are consistent all day long. The double vision is when looking in 1 or 2 directions only. I go on high dose Prednisone (50mg) and that usually nips it in the bud after 1-2 months of treatment. Then I start the slow taper. Usually it takes a few months for me to get below 10mg. Sometimes my symptoms come back sometimes they don't but I walk a fine line with the prednisone taper. Sometimes I'll go a few years without steroids and with no symptoms but then they will come back. Long story short I have been on prednisone for 6 months now, finally down to 5mg with minimal, if any, side effects. My symptoms are starting to come back and I can't take the steroid side effects from high doses, its really tough (mood swings, really bad insomnia, etc.) I really want to try another immunosuppressive, what have people had luck with? Has anyone tried Astragalus, Curcumin or other herbal supplements?
Sorry I never responded! I have been on Azathioprine for 5 months now and I have seen just a little improvement. I am completely off steroids so that's good. But I still have pretty bad double vision when looking down. I am hoping the Azathioprine starts working in the next month or so as it would have been 6 months since I started. Everywhere I have read says it can take 6-12 months for it to become effective. 
Yes, your doctor would give a referral, I believe; you may not need one, but it's still a good idea to keep your doctor in the loop. Neuro-ophthalmologists specialize in eye problems related to the nervous system, including MG. I have seen prisms mentioned a ton lately about being a life changer for people, far more than I've seen people say about treatments, so I highly recommend giving it a shot!
-Jodi, Team MemberThank you! I am definitely going to give it a go.
MG treatments and their effectiveness depend on the individual. Sometimes, Mestinon, prednisone, IVIG, or PLEX may still be needed to control the symptoms in addition to immunosuppressants. It comes down to discussing with your doctor and trial and error. If you want some direction to start a discussion with your doctor about immunosuppressants, Cellcept and Azathioprine are popular, https://myasthenia.org/MG-Education/Learn-More-About-MG-Treatments/MG-Brochures/ocular-mg
Jodi, Team MemberAwesome! Keep your head high; good things always come with time. Let us know if you have any further questions or concerns, and we would love updates on how the new treatment works out
Jodi, Team Memberthank you I will! I appreciate the support.
@hi my name is Joe, I have ocular mg.one eye is really bad I was on different meds that didn't work and now trying octagam infusions.so far no change.i have to wear an eye patch.vision is horrible
Here is a seronegative treatment discussion if you have yet to come across it, https://myasthenia-gravis.com/forums/do-you-have-seronegative-myasthenia-gravis-what-treatment-has-improved-your-symptoms-best
Jodi, Team Memberthank you so much for the information.
Hi
we appreciate you reaching out and hopefully other community members will chime in with what has been helpful for them. It is always important to keep in mind what is helpful for some may not necessarily have the same outcome for others. Also, we always recommend reaching out to one's physician before adding anything new. I included an article on complementary and integrative health that I thought may be of interest - https://myasthenia-gravis.com/mental-health/complementary-alternative-therapies. Also included a link to information we have on natural remedies - https://myasthenia-gravis.com/natural-remedies. Lastly I shared an article written by one of our amazing health advocates and her experience with insomnia - https://myasthenia-gravis.com/living/insomnia-experience. Hope this helps! Wishing you some relief. Hugs, Jessica, Team Member Thank you for sharing this information. happy to do so! Please know our community cares and we are here for you. Reach if we can ever help locate any other information or simply provide a safe space for listening. Wishing you well. Hugs, Jessica, Team Member
