Treatment for Ocular Myasthenia Gravis

[michail]

I have generalized myasthenia, but it is mostly contolled; one of the first symptoms to go/reappear is the double vision. Mestinon does not work very well on eyes; I would say that Prednisone has a much better impact on eyes; it has both long term effect, but also a short term improvement; by short term I mean after taking Prednisone (15 – 20 mg in my case), there is a notable improvement in double vision after about 5-6 hours which lasts for about another 8 hours.

[Jack VanWey]

1. I have omg and initially was treated with only mestinon. That was effective for about a year but the double vision returned and now I am on prednisone and mestinon. So far everything is under control, Doctor is trying to establish what is the minimum prednisone dosage I need to control the symptoms. Have had omg for three years.

[Phillip]

Pyridostigmine was medication prescribed for me when I displayed symptoms of Ocular MG. The pyridostigmine had immediately improved the ocular symptoms and swallowing. I had further testing (EMG) done and that confirmed ocular MG as well as gMG.
Still taking pyridostigmine in addition to prednisone and azathioprine.

[Alan Raj]

How long has it been since you initial diagnosis?  I have been prescribed azathioprine also, but haven’t started yet.  Has your experience been a good one with azathioprine?

[Phillip]

I was diagnosed September 2023. I haven’t had any side effects from the Azathioprine, can’t say I’ve gotten any benefit either.It’s too soon to say at this point. I started the azathioprine April 2023, Dr. tells me 6-12 months before we know.

[paul spychalski]

Thanks!

[Phillip]

Pyridostigmine was the medication prescribed for me when I displayed symptoms of Ocular MG. The pyridostigmine had immediately improved the ocular symptoms and swallowing. I had further testing (EMG) done and that confirmed ocular MG as well as gMG.
Still taking pyridostigmine in addition to prednisone and azathioprine.

[paul spychalski]

How much Pyridostigmine do you take? Thanks

[Paul A]

I was diagnosed in 2020 and was started with Mestinon 60 mg on an increasing dosage by my neuro ophthalmologist before referring me to a neurologist. + Acrh and normal EMG. My neurologist recommended IVIG and pyridostigmine ER. I refused the prednisone because of previous GI bleed and intractable hiccups as side effects.. So far, this treatment regimen is keeping me “normal”. No more double vision or ptosis but I cannot tolerate heat (hot Texas summer).

[Linda]

This is a timely topic for me.  I have been seeing a neuro-opthamologist since January for right eye ptosis.  The doctor suspects ocular MG and has had me try Mestinon with no improvement.  My MG antibody panel was negative.  Now it is suggested for me to start a 60mg daily dose of prednisone with a taper down over a month trial.  I am hesitant to risk the side effects which the doctor does not seem too concerned about, telling me that this option could possibly resolve the ptosis completely with no need for further medication.  I would like to hear from anyone with a similar experience.  I have read that treating ocular myasthenia gravis with prednisone could prevent the progression to generalized MG. My father was diagnosed with late onset MG in 2015.

 

 

 

 

[Cynthia Green]

Linda, in my case, we started with 30 mg prednisone and then after 60 days started to taper 20 mg for another 60. When I got to a 10 alternating five I was ok for about a month and then double vision came back. So started back on a 15 /10 for a month with good results and then a much slower taper. I have had good results. Our goal is to get to 10 mg every other day. My Nuero Ophthalmologist will be happy with that low dosage if we can’t do better, and I am too. Hope yours works well.

[stuart cohen]

Diagnosed with LRP-4 Ocular MG two years ago, eyelids completely shut. Mestinon didn’t work. Prednisone did, and immediately at 60 mg daily. Began tapering and am currently holding at 10mg daily. If your MUSK tests are negative – as mine were – suggest your doctor test for LRP-4 MG. Very rare, and unknown 10 years ago. The test is done through Athena Labs.

[Cynthia Green]

I was initially given Mestinon to treat my double vision after 5 months of not knowing what I had. I was treated by a Neuro Ophthalmologist at Stanford who quickly recognized Optical MG. It did not work for me. She started me on Prednisone and within 10 days my vision cleared. It was amazing. It has been three years since onset and now I am tapering off Prednisone. 10 mg and 3 mg alternating days. I am very grateful.

 

[Nicola Biagio]

Cynthia which was the initial load of pred for you?

Nicola

[paul spychalski]

I’d be happy too, Congrat’s

[Ray Bartholomae]

My ocular MG was under control with six 50 mg mendisone (Steel Ply?) daily.  Then I got COVID and while COVID symptoms not bad at all I lapsed into terrible double vision and general MG symptoms.  Prednisone, starting with 20 mg daily brought under control.  Now weaning down on prednisone, as all the cautions on steroids are correct

[Alan Raj]

Pyridostigmine helps for me for Diplopia (eye crossing) and swallowing, but I’m up to taking 120mg, 3 times/day [8AM,1PM, and 5PM] which my neurologist thinks is a lot, so he has prescribed me to start on IMURAN (azathioprine) 2X/Day.  The hope is I will maybe be able to reduce (or maybe eliminate) the 11 mg of prednisolone I take per day.  Swallowing has only become an issue recently, but I am still hoping I am not going towards gMG – so far no other muscle issues (Its been 4 years since initial diagnosis)

[John]

Have there been any studies that show Vyvgart can improve Double Vision?

[Bill V]

The only thing which works with my ocular MG is Prednisone.  In 8 years , I’ve had 3 relapses and, each time, prednisone controlled the episodes. The first time only required 10 mg/day, the second, approx 23 mg, and the third episode required 30 mg. Each episode lasted for 3-4 weeks after starting the Prednisone and gradually titrating upward from 10mg until the symptoms abated. When I was initially dx’d, I had plasmapheresis, which didn’t work, and I was unable to take Cellcept or Mestinon due to side effects. I am so grateful that Prednisone works so well for me.

 

[Vee]

What are you taking now?

[Paul Lull]

I’ve had ocular MG four separate times. I am currently in fourth go around. The first case (Diplopia and ptosis) was treated with prednisone combined with Cellcept. I reached 30 mg before being put on 1000 mg Cellcept. I was taken off prednisone and continued with Cellcept until symptoms cleared and was declared in remission (about 9 months). I was also prescribed Mestinon, but could not tolerate the side effects. 8 years later, the second bout was fought only with prednisone. I achieved remission with a maximum dosage of 60 mg over about a one year period. 9 years later, the third bout was again fought with prednisone, I achieved remission at 40 mg for 9 months. This case left me with a case of central serous retinopathy in my right eye. The current case, after 3 years, is being fought with Cellcept and Mestinon. I’m about 5 weeks into treatment with Cellcept and have seen a stabilization of both the ptosis and diplopia. I need to have safety blood work monthly because of the Cellcept, but it is a small price to pay for not using Prednisone.

[John]

Paul, you mention this…”This case left me with a case of central serous retinopathy in my right eye.”

Update please on this condition and has it improved for you, as this is what I have now also got. Fluid appearing in the Retina. I think on both eyes, plus a very small nodule appearing from a month ago when last tested at Bascom Palmer Eye Institute. Keep getting a fluttering in the eye and driving not been easy, plus I’m terrible at judging distance now and what appears near to me when parking is actually way out to what I think it is. The problem it appears to me is that there does seem to be a conflict here between my Neuro and the eye specialist as I think the Preds can keep the eye condition  relatively stable and yet eye gut wants me to get off them as they are in his opinion now causing the retinal problems so what does one do? Thats why I asked if anyone noticed an improvement with Vyvgart for Ocular MG as I had one months worth of infusions about 10 weeks ago and thinking another bout cant do me any harm? Certainly better than I was strength wise and balance but my eye condition changes daily.

Thx. J.

[Paul Lull]

Yes, the retina specialist worked with my neurologist to taper me of prednisone faster than what she wanted. The CSR generally clears on its own. I had about a 95 percent clearing and after 3 years the retina specialist has said that is as good as it is probably going to get.

[Paul Lull]

I forgot to mention that my neurologist says that she is phasing out prednisone as a treatment for ocular MG. I am using Mycophenolate (Cellcept generic) and is not as bad as Prednisone. I also take Mestinon and understand that is essentially a cosmetic fix and will not reverse the ocular MG.

[Gary]

My 1st symptoms of MG was vertical double vision. Since it would go away on its own my neuro opthalmologist attributed it to a palsy that I had probably had all my life. It wasn’t until I developed swallowing issues and double vision at the same time that I was tested and diagnosed with MG. My neurologist put me on 90 mg mestinon 3 x daily and 180 mestinon SR at night. That was 2 years ago and so far so good. No recurrence of double vision and swallowing issues have virtually disappeared. I do have the usual side effects from mestinon mostly in the morning but are tolerable.

[Nicola Biagio]

So Gary, if I understood well you take 1 and 1\2 pill of 60 mg mestinon 3 times a day? Does not a 1 pill 3 times a Day be sufficient

[Nicola Biagio]

So Gary, you take 1 and 1\2 cp of mestinon 60 mg 3 times a day? Does a pill taken 3 times a day not working.  Nicola

[matt-sereby]

Hello everyone. I need some advice to try and find some solution before things get much worse. I was originally diagnosed with ocular myasthenia gravis. After several years that diagnosis became GMG. I have had double vision for about 5 years now. Last year my right eye began closing. Not drooping but closing. This year my left eye began closing. If I sneeze both my eyes will close and I need to manually open them. Right now I’ve bandaid the right eye open and after 4 or 5 hours of being awake I also Band-Aid the left eye which starts closing. I have been through the usual mestanon and prednisone really to no avail. I do not take the mestanon anymore but I do take 20 mg of Prednisone everyday. In addition I have just finished my second full course of Vyvgart with a round of rituxemab in between. So I have a total of 10 infusions behind me and I still have the same problems. My strength has increased a little bit but my eyes are getting no better. Anyone had this experience and had a solution? I had a brief period of time where my eyes were both open easily. That lasted about 4 days. Everything else that I’ve done lasted a day or two. I am up for license renewal and I am required to go in person. I really would like to have some resolution prior to going for my driver’s license renewal. I really don’t think they were renew a guy walking in with Band-Aids holding his eyes open! I am open to suggestions and would love to hear if anyone had similar eye problems that have been resolved.

[John]

Matt, nobody has replied to you, so I will give it a go. I still have double vision(not as bad as before which was extreme) plus fluid now forming in my retina due to the steroids I’m told. On my second bout of vyvgart, just started, strength may have gained a little, but eyes the same. The second dose next week I hope will kick in. However, not sure how old you are but when you go and take the test put a piece of tape inside some non-prescription glasses which will stop the double vision. Get some clear sticky tape to hold the eyes open and the glasses will cover them…..If the eyes can see up to say 20 -30 feet, the number plate ahead of you it should be fine.

Don’t stress yourself as this could make it worse……any help you need fire away.

p.s. and about 30-45 minutes before the renewal, take the preds and about 4 lots of mestinon…..hopefully the eyelids will pop right open…………….-)))))

seriously, yes, I understand, no joking matter here but you will get through this.

[matt-sereby]

Thanks for the reply and suggestions. As it turns out I took the suggestion of one of my employees who told me to walk in like I own the place and tell him I’m here for my license. Went and first thing in the morning. Taped only my right eye up and kept my eyes closed until my number was called. Pass my eye test with a Band-Aid holding my eye open. Got my license with a Band-Aid holding my eye open and not one person said anything. But now I’m back to square one.

[John W Carnahan]

I was diagnosed with ocular myasthenia gravis in October, 1974. Because we moved across country a number of times in the following years,I have had more than a dozen neurologists, each of whom wanted to try mestinon as the main medication to control double vision and drooping eyelids. In every instance, I was moved to Prednisone which is the only drug that offered some control. Even when the prednisone was effective, it was often only partially so. While taking prednisone (which I have done for nearly fifty years) I had to wear an eye patch on one eye or the other to be able to function on a daily basis. The eye patch period lasted more than 25 years. Still, I was able to work every day, obtain two master’s degrees, work as a non profit executive and teach graduate school for more than a decade. I still suffer periodic lapses when I need to go from 7.5mg/day to 40mg/day to get the ocular MG under control, and those periods usually last about 5-6 months from onset of symptoms to the time when they are under control.

[Ray Bartholomae]

I see a lot of references to drooping eyelids. I had one eyelid usually shut and also did the tape “ solution “.  Then, in Chicago area, was referred to a surgeon who specializes in tightening the muscles in the lid.  2+ years now and perfect!

[Vee]

Who is your neuro? I’m in Chicago too. Who did the surgery?

[Frank]

Hi

I started with OMG with double vision and right eye diplopia. 90 mg of mestanon 6 times a day took care of it. 1.5 years later I’m on 60 mg 3-4 times a day and it’s never come back. I did move into GMG though. Because of a mg flare I went on 20 mg prednisone once a day. I’m down to 1 mg a day and next week to 0 mg.

Never had double vision come back. I have a great neuro at a university research hospital.

In reading this and other threads saying mestanon doesn’t help diplopia, it seems to me a lot of neuros are not prescribing either a high enough dose or aren’t prescribing enough doses per day. You can take 120mg 6 times a day and be fine.

Well that’s my experience. Best of luck!

Love and Light
Frank

[Nicola Biagio]

Frank, many thanks for the reply.

How fast was 20 mg prednisone working in your case?

Nicola

[jeri castellanos]

I have been on Mestinon for Ocular MG since 2013. For over a year it worked fine on its own. Then the double vision came back. My Neurologist put me on prednisone in 2014 and i have been on it ever since. there are times it has worked and times it has not. My dosage has gone up and down over the past 9 years. It has also caused more problems for me than the MG ever has. I have developed Osteoperosis, Purpura, Prediabetes, Night sweats, Sever bruising and skin tearing, My hair has fallen out, my teeth have been damaged, i have gained over 80 lbs (after having lost 195 lbs and keeping it off for over 5 years), insomnia, diarrhea, high blood pressure, migraines, moon face, buffalo hump, steroid induced cataracts, depression, mood swings, and i have compression fractures and herniated discs up and down my spine. I have also been on Cellcept, Azathioprine and I was put on Gammagard IVIG one year ago every 4 weeks. My eye muscles felt stronger, but when i attempted to reduce my prednisone, my double vision came back. After a year i was put on Vyvgart. I believe this may have worked as i could feel the difference, however i only received the first two (out of 4) initial doses and then i had to move out of state for personal reasons. For now, i am still on 15mg of prednisone daily and 180mg Mestinon ER. My double vision has not come back, but i am slowly dying from the prednisone. Unfortunately this seems to be the only combination that works for me (although it also sometimes doesnt work for me). All i can say is that if you get put on prednisone, be sure to get off of it as soon as possible. It is a horrific drug and long term use will wreak havoc on your body. The treatment is worse than the disease.

[Frank]

Hi, Nichola!
I’m one of the lucky ones that has drugs start working pretty quickly. I’d say the prednisone probably started within the day, the second day at the latest. My experience has always been that prednisone works pretty quickly, but maybe that’s just for me. I was lucky and only gained 10 pounds on prednisone over 9 months and now that I’ve been cutting back I have about 7 of those pounds back off.

I did just notice last evening, after I’d begun cutting back my mestanon from every 4 hours to every 5+ hour (cutting one dose out per day)  that I started having my high eyelid start drooping. So, I’ve gone back to every 4 hours and my eye is no longer drooping, or if it is, it’s just a tiny bit.

For me Mestanon is “my” drug and prednisone is more of a rescue drug for when I’m having problems.

I hope this helps and I wish you luck.

Love and Light,

Frank

 

[Ramkoomarie Gajraj]

Hi ,

I was diagnosed with MG since Nov, 2019 and my PC prescribed Mestinon 60 mg 4 times a day, and that controlled my double vision and opened my eyelid, to date that is all that I am taking.

Some days my leg muscle hurts, but I push myself. Recently my eye Dr told me I have high pressure in my eyes , and I asked him if it’s due to MG and he said no, so I am confused,  he prescribed some e y e drops to use every night..

Any suggestions will be helpful

Thanks

Ram

[Paul Lull]

I’ve spent 20 years dealing with oMG. I’ve taken Mestinon, Prednisone, and Cellcept. Complications from Prednisone has eliminated that drug from being a potential therapy. I was lucky enough to get to an appointment with a Neurologist at a major medical institution in Maryland. The doctor eliminated Prednisone right off the bat due to the retina damage it caused the last time prescribed. The doctor did say that Mestinon is not a cure, but rather a temporary fix (cosmetic). To end the diplopia and ptosis one must reset their immune system. I am now taking Cellcept in order to do that. I do take one 60mg Mestinon tablet a day down from three. One must be patient to win the race when it comes to oMG. Hang in there.

[MikeS]

I’m on Prednisone (30mg) and Mestinon (60mg, 4xday (every 6 hours)). What I’ve finally figured out (for me) is that Mestinon is an hour-by-hour medication because it’s effect kicks in in about 1 hour and lasts about 3 to 4 hours, followed by the next dose at the 6-hour mark, etc. So I go through 4 of these cycles each day, scheduling my meals during the 3-4 hours it’s effective in each 6-hour period.

For me, it takes around 2-3 weeks for an increase in Prednisone to kick in, manifested by the start of improvement in MG symptoms (for me, just bulbar types, I.e., swallowing, chewing, slurring, facial muscles weakness including eyelids) . My most recent flare-up began at the start of April at which time I increased Prednisone from my baseline of 15mg to 30mg. I also adjusted Mestinon dose up to 60mg (4xday every 6 hours) for a total of 240mg/day.

My MG symptoms finally disappeared about two weeks ago. I will start weaning down the Prednisone next week (June 15) at a rate of 5mg/month, until I’m back to 15mg/day (around mid-August).

Today I started weaning down Mestinon by reducing one of the four daily doses of 60mg to 30mg. Each week (except for next week when I reduce Prednisone to 25mg) I will wean another of the 60mg Mestinon doses to 30mg, until all four doses are at 30mg.

I guess the next step, as long as I remain MG symptom-free, is to continue to reducing both meds slowly over time. My Neurologist has fully approved my current reduction schedule above.

Now I have a much better idea about what to do the next time a flare-up starts. Learning how to react to flare-ups by the above method really has reduced my anxiety tremendously!

[Mike]

a lot of the above sounds familiar, and brings back some memories of what I suffered. I had the ocular issue, brought on my a ‘tier drop stroke´or so the doctors thought at the time. I had a op to lift the eye lids and wore quite a strong lens pair of glasses for a while. At the same time I visited a private doctor here in Spain, and he diagnosed ocular MG which was developing into generalized MG. he put me straight on Prednisolone and Mestinon. High doses of each at the time and over the next few months lowered the Prednisolone to the now 5mg a day and the mestinon to 60mg x 4 times a day. I now find that i can get by on just 3 mestinons a day, except when the heat is too high and my muscle / nerve condition is not so good. All in all I`m fairly well at the moment and its not interferred too much with my life, though when I had double vision in the early days it was really frightening, thankfully that has eased now. Both the tablets mentioned need to be monitored due to kidney and stomach lining erosion issues I am told.

[Nicola Biagio]

I would like to ask all of you how long it takes prednisone to work with diplopia and the effective dosage, and what was the schedule of administration.

Nicola