Thank you to everyone for sharing. I think I'm going to start the prednisone, as I agree with the quality of life issue. My double vision and droopy eye (totally closing eye) have made my life very difficult. I'm a 5th grade teacher and some days doing my job is impossible. Not to mention driving or trying to do anything at night because my eyelid is totally closed. Even having a conversation with others is hard because my right eye is basically frozen and I can't look straight ahead without my eye closing or horrible double vision.

I've also read that a few studies have shown that people who start with OMG have a better chance of not having it progress to GMG if they take prednisone. Have any of you heard of this?

Yes, I've read some of the studies and it is certainly worth a try. It is important to look at your quality of life and anyone who has had double vision and/or ptosis understands how significantly that affects so much that you do in your daily life. It used to tick me off when doctors would tell me "well, it's only double vision."

I only wish that I had had treatment offered to me at the start of my symptoms and when the suspicion of MG was initially raised. I was not treated until nearly 8 years after I first had double vision. I ended up having to retire at age 50 due to the inability to manage symptoms and work full-time (or even part-time). Yeah, I'm just a little bitter about that, but so so grateful that I had the ability to retire with a decent pension.

I hope that you experience some positive results from the prednisone. Do keep us posted.

Cate

Lisa, I'm afraid I'm going to be a dissenter.

I realize that the eye issue is a problem for your daily life. What would your daily life be if you had Pred-induced diabetes, frail bones, increased infections, suppressed immune system (catching everything those kids had to offer that could wind up making MG go generalized), steroid-induced muscular pain, and so many other lovely things they guys have already laid out.

I personally think doctors do this Pred thing all wrong. Why start with a high dose? Why make patients go through months of tapering, which they often don't do successfully. And then, when they do, they want the heck off of the drug due to all of the side effects and adverse effect on their life?

Why not start with a small dose, every other day (that's not a recommendation, but a real question to doctors)? And I mean SMALL. A person can always go up, but going down is the problem.

Have you seen a neuro-ophthalmologist for tips?

I'm on an inhaled steroid for asthma. Even that creates issues.

And another thing doctors don't talk about is the cancer risk. What is the cancer profile of your family?

There are conditions that Pred creates that can't be undone. And some that can't be undone very quickly. Even if you take calcium and Vit. D, you can have teeth and bone issues.

And did your doc even mention that Pred is an anti-prostaglandin and that you should be taking good ones or eating fish, etc? It's not only an immunosuppressant! It gets rid of both bad and good prostaglandins, which help with many functions of the body.

And, yes, there have been a smattering of studies showing that immunosuppression "might" keep OMG from progressing to generalized MG. And there are also studies that show patients with OMG can have a positive SFEMG in areas other than the face, meaning that it is already affecting other areas, but not so much that you would notice yet.

This is a very personal choice and it's up to you what you'll do. But I would highly recommend speaking to both your internist and your neurologist about the effects of it again.

Do you want one problem, albeit an annoying one that interferes with your daily life, or a multitude of them from Pred?

I'm only posing questions and putting thoughts out there because I have seen so many people suffer from this drug. Yes, I've also seen people, such as those with lupus, benefit greatly from it. But I have to honestly say that this drug is very destructive and you cannot underestimate the damage that it can do to varying systems within your body.

I'm not very good at sugar-coating anything. You have the right to consider ALL of the issues of this drug, and whether another drug might be more useful for you.

Also, you have to look at this in view of your overall health, lifestyle, and diet. Those are very important factors. Do you sleep enough? Eat enough nutritious foods? Are you a carboholic, which could be problematic with Pred?

Also, consider what effect Pred can have on your female hormones as well.

Again, I'm not telling you what to do!!! But doctors don't often go over all of the bad stuff because they want to be useful and solve that ptosis issue.

I hope you do well on it.

Annie

Thanks for the information. Very helpful!

I don't want to be a pain, but you asked for opinions, and not to scare you, but I'll just give you my humble opinion.

Prednisone, I hate it. True, it is the only reason I can (most of times) breathe on my own, but that's about it. I was a healthy young person, and now I'm not only a MG patient, I'm also -probably even more- known as a prednisone patient.
I have GMG and would never have taken prednisone if it was for my eyes (or mounth or legs for that matter). I only take it because I have no option and would be in the hospital on oxygen fulltime if I didn't.

Yes, I am a little ray of sunshine

No, but to be fair, my body's response was beyond what could be expected, and my MG is severe and is, how do they call it, refracting (?). So my experience is not someting to expect, just something to keep in mind.
I do wish however, someone told me possible side effect beforehand, so I (and family who has suffered a lot too, mostly because of fear for my health, but my steroid induced psychotic periods too), would all be a bit more prepared. All I was told it would be spectecular and awesome and my weakness would go away and stuff.

And well, what Annie says.

Lissa you have to make your own decision on this I take Prednisone and have done for several years now. I now have pred induced type II diabetes among other unpleasant side effects I would advise you to seriously consider alternative options first.

Again- thank you for all of your thoughts and experiences with prednisone. It has really given me a lot to think about. I'm actually going to the University of Madison Hospital in Wisconsin in about a week. They're the best around and have a neuromuscular clinic. Until then I'm just taking the Mestonin I've been on for the past month. I'll keep you updated on what they have to say at my appointment.