Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Recently diagnosed with Ocular Myasthenia. I have double vision. I am now taking 60mg Prednisone one time per day. And have been on that dosage not quite a week. How long does it usually take to get rid of the double vision? And does it just suddenly go away? What is the usual daily dosage once the double vision is cleared up? Thanks
You can ask people here for recommendations for your area, but you're pretty much going to find a Neuromuscular specialist at a teaching hospital, if there is one within a reasonable distance of your home.
Annette
I think prednisone takes more than a month even at high doses to work for most people. There are some complicating issues:
-- antibodies already in the blood have to disappear, no idea how long that takes with prednisone
--after they disappear, sometimes the muscle receptors have been damaged, so they may have to regrow (this will happen after the antibodies are gone)
There seems to be both a blocking and damaging component to the antibodies. So if one takes IVIG or PLEX, the antibodies are gone quickly and symptoms can go away in a week or so, but will come back as the immune system produces more until blocked by pred.
Normally if you have ocular MG, you get pyridostigmine--brand name Mestinon--first and prednisone added if you are getting worse.
Feel better.
Al
You are correct in discovering that prednisone slows the progression of the disease. That doesn't mean 100 percent that your disease will not become generalized although it can halt the progression. I hope prednisone works for you. Mestinon can also be used as a supplement to prednisone. I am currently on prednisone, imuran, and mestinon. Mestinon gives me that kick every couple hours to make me more functional. Mestinon, on top of prednisone, could possibly give you quicker results.
Good luck!
http://link.springer.com/article/10.1007%2Fs00415-009-5120-8
If I had ocular MG only, I would do whatever I could to prevent generalized. I am on prednisone and Imuran (for 3.5 months now, which is too soon to tell how it is working), and I still get the eye droop and double vision at the end of the day if I have pushed myself very hard.
I do have GMG, I wish I would have had prednisone earlier in my process but being seronegative made everything more difficult.
Good luck!
I wonder if you dont use your eyes too much. I always get double vision when body is getting worse. Right now I am tired and vision getting unfocused.
too much tv ...too much computer?????
Ann
I submit this for your study: PLEX will stop ocular MG from turning into general MG. I claim that this is exactly the same reasoning that doctors who claim prednisone will stop ocular MG from progressing
use.
I started with ocular MG and progressed to full MG in about a month or less.
IF my neuro had aggressively started treating me immediately at diagnosis with PLEX, I am quite sure I would not have progressed into general MG.
My immune system would still be churning out the bad antibodies just as fast as they were when I got the sickest with general MG, but the PLEX would be removing them as fast as they were produced. So, I would never have had the miserable general MG symptoms.
Of course, we all are very sure that if I had stopped PLEX, I would then go into general MG, just as we are likely to think that as soon as a person who has MG stopped at ocular level by early prednisone, is likely to go into general MG if it is stopped (excepting that some folks never progress naturally and some go into remission naturally).
So, where is the scientific evidence that you can stop the progression of MG with early prednisone that follows up those folks a few years later?
Are those people now off prednisone, or alternate immune suppresson? Do they still have ocular symptoms? Did they get worse? Are they in remission with drugs or without? I think the evidence is mostly lacking, and the interpretations also lacking!
Maybe what we might say is that if you have ocular MG, you have a high chance of getting general MG, so if you start prednisone early, you will not get the big crash into general MG that most of us have, rather than saying it will stop you from getting general MG. You may ease into general MG without ever knowing you have it unless you stop prednisone.
Crashing into MG is pretty spectacular, many of us here have our own stories! Trying to prevent that is a good goal. I just quibble with the idea that it prevents general MG rather than treats MG that is still underneath--waiting for prednisone to be dropped.
And, finally, taking prednisone immediately does not let you know if you are one of the fortunate few that never will progress or maybe even better, one of those 15% who go into natural remission.
Getting off prednisone is probably one of the punishments I think are reserved for Hell. I see it as we get 100mg a day for one year so we get all the side effects, and then have the next year to taper and this lasts through eternity. Luckily I am 66 and see only a decade or two ahead, and have plans to go elsewhere later;-)
Doctor is suggesting Imuran for a long-term solution... but we shall see.