Need some advice on prednisone
 

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.

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.

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.

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

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.

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

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

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.

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." :confused::eek:

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 :p

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.