Steroid Rx with Ocular MG
 

I'm curious if others have been prescribed prednisone for ocular mg. I've used Mestinon (sporadically) since March with little long-term change in my double vision. My neurologist has suggested trying prednisone at a high dose, (about 60 mg/day) for short-term use, to determine if that'll improve my double vision. If I get a response to that then the plan would be to start a longer-term immunosuppressant and wean the prednisone.

I am concerned about the side effects of prednisone (as well as Immuran and Cellcept) and am unsure how I would like to proceed. Any thoughts or experiences from others with OMG would be appreciated.

Cate

Hi Cate,
Ocular MG is best treated with Mestinon + Pred, results could be obtained within less than 1 month.
I think however than 60 mg/day is a high dose to start with, I begun a progressive intake of 5 up to 50 and when I left the hospital after 3 weeks, my double vision was gone...
Maurice.

For my ocular MG, my neuro started me on Prednisone 40mg and Mestinon. I saw almost immediate results the first day. Gradually reduced the Prednisone over 3 months and then I was off it for a month. After a month double vision came back very bad, so he started me back on Prednisone beginning with 5mg and working way up. Didn't help this time and then I got other symptoms. Had plasmapheresis and surgery to remove my thymus. Second time it took me 5 months to taper off Prednisone. I've been off it since mid-April and have just been taking Mestinon. I can't shake the feeling that one day I'll wake up with the double vision back. Mine gets very bad and I can't drive safely.

Good luck with your decision. I don't like being on the Prednisone, but it does work, at least for me.

I was diagnosed by a Neuro-ophthalmologist when my MG was only ocular. He put me on mestinon at 5x30mg a day for 2 months without any benefit.

When I started displaying signs of generalized MG he sent me packing to a regular Neuro but not before prescibing 60mg a day of prednisone. My double vision and ptosis was gone in 2 days.

I still take it but I am down to 20mg every other day and it is likely to be reduced Sept. 1 when I see my Neuro. I have been taking it for about 20 months but I had a miserable 2009 so I did not start reducing it til this year.

Good luck;
Tony

I wanted to add that I take Mestinon only and I had very bad double vision (could not read or drive at all). My neuro said that it may take up to 6 months for the Mestinon to help the double vision...and my double vision mostly is gone now and it took 5 months of taking Mestinon and also Mestinon dosage adjustments (too much Mestinon gives me double vision as well as not enough). I am so relieved to have the double vision gone. I hope you find something that helps.

Wow! Thanks for all your replies. It seems that for most of you, the prednisone (or a combination of prednisone/mestinon) was needed to alleviate the double vision. That is basically what I've been told by the ophthalmologist and the neurologist.

I've had double vision for 7+ years, but just recently had a tensilon test that was positive. All the other tests have been negative, but neurologist feels it's most likely ocular MG. The double vision is now present at all times, sometimes controlled by prisms in my glasses, but gets a little crazy when I'm too active and/or later in the day. At the present time, that's my most concerning symptom. I occasionally have some mild swallowing issues, but it's never been a major problem.

So...part of me feels that my disease is very minor (thankfully), although annoying, and I worry about trading the minor symptoms for some potentially problematic side effects of the prednisone. Can anyone speak to how the side effects of prednisone affecting you?

Cate

Between the pred, mestinon, cellcept and the IVIG's I am not sure what medicine to pin most of my side effects on. The one I know is from pred is the thinning of the skin. I cut or bleed under the skin with just the slightest bump. This started about the 5th month I was on pred when my neuro told me it was from the pednisone.

Tony

I have a droopy eye, but not double vision. In 2 years I have taken prednisone for 1 week on 3 different occasions. One was to prep for my thymectomy and the other 2 times were when my eye was completely shut. I only took 10 mg a day. It did open up my eye. I also took Mestinon at this time.

I noticed the biggest change when I started CellCept, although my neuro said CellCept usually doesn't help Occular. My eye stays open all of the time now on 1500g a day.

Catie, Deciding whether or not to take Pred is a very personal decision. Prednisone can be a huge help but there is no way to predict what your short-term and long-term side effects will be. I personally think "short-term Prednisone" is an oxymoron.

If you do go on Pred for say a month, your ptosis and double vision could get even worse for a while after you go off of it. It's what's known as a "rebound effect." It happens with lots of drugs like hypertension drugs, etc.

There are so many truly bad side effects from Pred. You need to go read a complete insert on the drug for yourself.

Have you gone to a neuro-ophthalmologist to see if there are other things you might do that would help?

I just live with the ptosis and DV. It's not super bad like it is with some people. I can't do the other drugs unless I get much worse - too many contraindications.

Prednisone is not a simple drug. My personal opinion is that I would rather put up with the ptosis and DV than have potential glaucoma, cataracts, Pred-induced diabetes, thinning of bones, etc. And you can have more than one side effect!!

Take some time to think about it, read up and maybe talk it over with your family or friends. It's not a simple decision. I hope you can figure out what is best for you.

Annie