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One of the latest news articles published on our site, https://myastheniagravisnews.com/news/ocular-mg-symptoms-can-be-eased-with-immunosuppressants-study/, covers a recent study that found “Immunotherapy appears to be beneficial for patients with [ocular MG]” (https://journals.sagepub.com/doi/full/10.1177/17562864231163819).
“A total of 120 patients (88.9%) were treated with acetylcholinesterase inhibitors, such as pyridostigmine (sold as Mestinon), a recommended first-line therapy for MG designed to improve nerve-muscle communication and muscle strength.
Among them, 78 (57.8%) received further treatment with one or more immunotherapies, primarily oral prednisolone. Of the 15 (11.1%) who didn’t receive acetylcholinesterase inhibitors, 12 (8.9%) were treated with one or more immunosuppressive therapies. Overall, 90 received immunotherapy, 45 didn’t.
Intravenous (into-the-vein) methylprednisolone was administered to 37 patients, while calcineurin inhibitors were also used frequently. Intravenous immunoglobulin treatment and plasma exchange were used in four patients to ease their eye symptoms. A thymectomy, surgery to remove the thymus gland and used as a long-term MG treatment, was performed on 11 patients” (https://myastheniagravisnews.com/news/ocular-mg-symptoms-can-be-eased-with-immunosuppressants-study/).
Do or did you ever have ocular Myasthenia gravis, and did immunosuppressants result in improvement? If not, did any treatment work for you?
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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.
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- 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.
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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.-
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?
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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. -
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).
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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.
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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.
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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.
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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
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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)
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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