[Lisa33]

I'm a 44 year old female and newly diagnosed with ocular myasthenia. I'm currently taking 90 mg of Mestinon three times a day and 180 mg time released Mestinon at night. I think that the medicine is helping a little, but I still have double vision, right eyelid drooping, and my right eye has limited movement. My neurologist and I have discussed prednisone. I'm very hesitant to start prednisone with all of the side effects. Yet, I also know there are studies that have shown prednisone can help with OMG limit the chance of developing generalized myasthenia. For those of you that have used prednisone, what kinds of side effects did you have and how did it help with your symptoms- short and long term?

Any thoughts or suggestions are greatly appreciated.

[pingpongman]

Most of the drugs we take are bad. I believe prednisone is the only thing that will help with double vision. I have been on it for over 5 years and never felt bad results except when I was on a high dose and had one episode of "roid rage" none since. I now take 15mg and started at 80mg, still tapering.
Good Luck and welcome aboard
Mike

[Lisa33]

Did the prednisone help with all of your symptoms? I know everyone reacts differently, but I'm just trying to understand this disease from others who, unfortunately, experience it instead of just all the reading online I've been doing. Do you have only the ocular form or generalized? I've been lucky that I haven't had any side effects with the Mestonine.

[Lisa33]

Originally Posted by pingpongman

Most of the drugs we take are bad. I believe prednisone is the only thing that will help with double vision. I have been on it for over 5 years and never felt bad results except when I was on a high dose and had one episode of "roid rage" none since. I now take 15mg and started at 80mg, still tapering.
Good Luck and welcome aboard
Mike

Did the prednisone help with all of your symptoms? I know everyone reacts differently, but I'm just trying to understand this disease from others who, unfortunately, experience it instead of just all the reading online I've been doing. Do you have only the ocular form or generalized? I've been lucky that I haven't had any side effects with the Mestonine.

[pingpongman]

It mainly helped with my double vision. I failed to mention my skin cancers since being on prednisone. If you do start taking it I recommend a yearly visit to a dermatologist. As my neuro-muscular explained to me "what quality of life you want depends on the meds you take". He is very blunt but is also very smart when it comes to MG. let me correct my dose it is now 71/2mg. It is a slow process to wean off of it.
I have had IVIG treatments which helped my strength and also take 2500mg of cellcept daily.
Mike

[catie]

Originally Posted by Lisa33

I'm a 44 year old female and newly diagnosed with ocular myasthenia. I'm currently taking 90 mg of Mestinon three times a day and 180 mg time released Mestinon at night. I think that the medicine is helping a little, but I still have double vision, right eyelid drooping, and my right eye has limited movement. My neurologist and I have discussed prednisone. I'm very hesitant to start prednisone with all of the side effects. Yet, I also know there are studies that have shown prednisone can help with OMG limit the chance of developing generalized myasthenia. For those of you that have used prednisone, what kinds of side effects did you have and how did it help with your symptoms- short and long term?

Any thoughts or suggestions are greatly appreciated.

Hi Lisa,
Welcome! You've asked a very good question. It's great to gather additional information. Deciding whether to take prednisone is a very personal decision and only you can make the final decision.

I was originally diagnosed with OMG, though I also have symptoms of generalized MG. I started taking prednisone (60 mg daily) a little over 4 years ago. This high dose of pred did clear my double vision, but once I tapered below 40 mg, my double vision returned. It took over a month of the high dose before I saw relief from the double vision. It's also important to mention that often times a high dose of prednisone can initially exacerbate your MG symptoms.

I was taken off of prednisone about 9 months ago. It was a VERY SLOW process to wean the prednisone. Some of the side effects that I experienced taking prednisone were osteoporosis, high blood sugar, high blood pressure, insomnia, and some mood swings.

It was my decision to stop the prednisone, b/c I felt the long term side effects outweighed the benefits for me. I'm currently taking mestinon and cyclosporine. Yes, I still do have double vision but I do OK with prism glasses b/c my double vision is fairly stable.

[Lisa33]

Do you also have the droopy eyelid? And if you do, did the prednisone help with that? My right eyelid significantly droops as the day goes on, and it also totally closes in bright lights, sunlight, and while I'm driving. It does this even if I have sunglasses on. Thanks for sharing.

[catie]

Originally Posted by Lisa33

Do you also have the droopy eyelid? And if you do, did the prednisone help with that? My right eyelid significantly droops as the day goes on, and it also totally closes in bright lights, sunlight, and while I'm driving. It does this even if I have sunglasses on. Thanks for sharing.

I have one eyelid that droops and get worse as the day goes on. Mestinon helps a little. When I was on prednisone, it did help with this. Funny how I didn't really notice it that much at the time, but when I look back at photos, my droopy eyelid is quite noticeable. I'm sure that also contributed to the double vision.
Cate

[JimInMI]

Lisa, I have generalized MG, not OMG, but I've taken prednisone on and off for 16 years. Mike's correct when he talks about quality of life. I've been on a dosage as high as 100mg. I've not had skin cancer, but I'm on the lookout for it. I have, however, had cataract surgery on both eyes, I have osteopenia, and osteoarthritis. As Cate mentioned, I've had high blood sugar, high cholesterol, insomnia and mood swings. It can also thin the skin and cause it to easily bruise.

To be clear, due to personal choice and the fact that my MG is considered mild to moderate, I chose prednisone, imuran and mestinon over other medications and treatments. Do I regret my decision, ask me in five more years.
Jim

[neutro]

Hi Lisa 33,
Pred is effectively active against ocular MG (double vision and droopy eye-lids).
I started with generalized MG in 2007 and was put on Pred with an increasing schedule up to 75 mg/d. My ocular problems disappear within about 2 months and never reoccurred since. I'm now on Mestinon (5 x 60 per day),7.5 mg Pred per day and quit Cellcept after 4 years due to lack of effect. I have also one PLEX every 2 months.
You may consult
http://neuromuscular.wustl.edu/mtime/mgrx.html
for the various side effects you might expect with the available medications.
Personaly, with Pred, I have eye problems (cataracts on both eyes, glaucoma and field vision narrowing) but my father had also cataract and glaucoma without MG..., osteoporosis could be fought with vitamin D3 and calcium supplements, eye internal pressure should be regularly monitored and osteodensitometry performed every 2 or 3 years.
My waist also increased(...) but neither diabetis problem nor moon face...
Pingpongman mentioned skin cancer but I think Cellcept should rather be involved into this.
I think that the treatment of OMG alone with Pred doesn't need to exceed a few months so that Pred possible side effects could be minimized.
Maurice.