My droopy eye lid and double vision quickly went to trouble swallowing and talking. Then I would choke while just trying to swallow water and not be able to even clear my airway. I would choke and gasp and fight to get a breath and since I had always been quite healthy I didn't even realize that I could be having respiratory distress and should be at the ER.

Finally a neuro told me what I had and put me on prednisone. I really don't think I am exaggerating when I say he may have saved my life.

Within a week the prednisone had cleared up my eyesight and really helped me with my swallowing and speech.

It is now almost exactly one year since I was diagnosed. I am now on Imuran and my symptoms are mostly controlled. Sure I get tired and my voice gets weak. Sure I sometimes have a little trouble swallowing and need to take some Mestinon. For me the double vision has been gone since about the third day on prednisone and has never returned.

I was even able to get completely off the Prednisone and have been for almost three months now. But the prednisone made it possible for me to get things under control.

I know that prednisone has bad side effects. But uncontrolled OMG can be life threatening. And yes, my neuro says my version of MG is Ocular MG not generalized MG.

I'm sorry that you have to experience this crazy disease, but I am glad you have found this group. This group has certainly helped me get through this and the many knowledgeable and caring people here will help you also.

Thanks Bill for your reply. I am hoping to get into see a neurologist before long. I've always got a supply of Mestinon on hand but haven't been under the care of a neurologist in many years. I don't know if you read my bio but I was diagnosed with Ocular MG in l952 and it has never progressed to generalized. That is certainly my prayer today that it remain ocular.

HI Carolina,
Here's my personal take on Prednisone. Good for short term, but not for long term. Once you are on it you're supposed to tapper down. Sometimes doctors will put you on it for a few months or for however long it takes to treat your symptoms, but its really not meant for long term tx. The longer you are on it the more likely you are more like to experience its nasty side effects. I have been on it before for Irritible Bowel Disease. They thought I had Crohn's disease at first, so they put me on to help treat the inflamation from that. I was on Prednison for 4 months. I can't remember the dosage. It was really helpful w/my IBD symptoms, but after a while I started to develop really bad tremors in my extremities to the point where I could not hold anything in my hands or sit still. It was bad. I couldn't concentrate either. I was eventually switched to another steriod w/less side effects, but was not as effective. I haven't been on it to treat my MG symptoms yet because I have not been officially dx'd, but neuro keeps bringing it up. I can't personally speak to its effect on MG, but I have read posts on here and my feeling is that most people find it helpful in the short term. I guess if you are going to consider taking it I would ask your doctor how long they think you are going to be on it and what the plan would be if you have side effects.

Carolina -

I've been on prednisone, lots of it. I have generalised MG. I can't speak of its benefits for ocular MG. You will need to speak to others about that.

I urge you to get in front of a neurologist ASAP to discuss your symptoms and treatment options. If we discuss them here without a visit to a neuro as a backdrop, all we're doing is speculating. This is too serious for that. Do you have an appointment set up with a neuro?

Curt

Getting an appt. with a neuro is not easy. My primary care doctor retired last year and I have had no one. I tried making an appt. with a neuro but have to see my primary care dr. first and then be referred. If you read my bio you probably noticed that mine has been confined to my left eye for 60 years. (Diagnosed in l952 but it never generalized) That is of course what I'm hoping for in this case. I'm having no other problems except my right eye now. Mestinon was the drug of choice back in l952 and I keep some on hand. I have been taking it the past few days and have learned thru the years how much I can tolerate, etc. and have been able to keep it manageable. I saw a neuro in KC about 15 years ago and he told me that since it had remained in my eyes for 45 years it would be classified as only ocular. I hope it stays there!!!

I find driving is the worse for my eyes.
Ann

Since I've had the disease for so many years I have learned to compensate. When it's bothering me a lot I drive with one eye shut. That's easier than wearing a patch over one eye.

It took a couple of months to work for me. Both eyes have been open and equal since last September. I am currently on 20mg and we will try to get it lower,

I didn't have double vision.

I would think it depends on your comfort level and patience.

A long term solution might or should be a cellcept or even imuran for treatment, however that comes about. I can tell you that Cellcept, has done great for sustaining my eye issues. I have generalised MG, but I am confident that if you were a patient of my neuro, you would be getting cellcept.

Problem is, it could take months to be effective, IF it is effective(there are no guarantees with anything) and that is where the comfort level and patience come in,

Prednisone, while having a more serious side effect profile, should be faster relief, IF it is to be effective.

Having said all that, both of these drugs have been proven to be very effective. So has Imuran.

Perhaps there are more to comment around here that have OMG only and have taken prednisone etc,

I myself, have never taken prednisone.

Best wishes for peace,

TJ