i always have a problem trying to figure out where to reply..hope this works after 3 years of no relief of eye symptoms our neuro got more aggressive and put my husband on 60 mg prednisone for i think 2 weeks then started decreasing dose so one then one day 60 the next 50 for 2 weeks and continued decreasing took almost 3 months to get him down and he is now on 15mg prednisone every other day...it took almost 2 weeks for him to start seeing a major improvement but it kiced in and he has been symptom free since last august. found this info thru this site it might help you www.myastheniagravisbooklet.com KNOW your other meds...my husband has been on a certain blood pressure med...doing ok myasthenia wise but the internist doubled his dose and his symptoms started back. he prob should never have been on that drug to begin with but at the higher dose problems arose...

Hey- just wanted to add my 2cents here. I have been on a continous dose of 50-100mg of prednisone for three years and have had several symptoms from it. I dont reccomend it if he doesnt have breathing problems.. or life threatening problems. I hope he is okay though. By the symptoms i mean: irregular heartbeat, rashes, bad immune system. It is a miracle drug, so if it helps him be stronger, than more power to it. Just watch the side affects.

Good luck

Hi krysse,
Just a few additional comments above what has been said so far:
-avoid any beverage containing quinine, Schweppes, for example,
-pred lowers potassium in blood, some supplement (bananas, nuts...) is advised but not to much as potassium may interfere with cardiac functions,
-cortisone interferes also with calcium absorption and may lead to osteoporosis, calcium + vitamine D3 supplements are thus welcome...
-pred should be taken in the morning, preferably during breakfast to avoid sleep disturbances.
Take good care of your in-law!
Maurice.

Hey everyone. Thanks for all the replies ! I've relayed all this to the family.

So, the Prednisone doesn't seem to really be making a difference, yet.

He is having a very difficult time eating--this started about three weeks ago. We found information that very cold/hot and/or food with spice could be the cause. He's very frustrated and it's hard to watch him eat. He also begins to have trouble with his tongue if he talks for an extended amount of time. The way he sounds seems like his tongue is stuck at the bottom of his mouth. Does anyone have similar problems? What steps did you take to help with this?

It's scaring me how fast these symptoms are coming on. The problems with his tongue and eyes (lids not opening) are issues that are new to us, so we're trying to find out as much information as we can. His vision is OK--no double/blurred vision ... that's how he was initially diagnosed.

He is doing well on the Prednisone ... he doesn't seem to be having many side effects and hopefully it stays that way. He did mention that he lost two pounds since starting the Prednisone. My theory for his weight loss is because he is not eating as much or as fast simply because he can't.

I'm worried he is going to choke because when food gets under his tongue he has a VERY difficult time getting it out.

He has dropped to half a pill with his MG medicine, which is only helping with his eyelids--but even that is a great improvement.

I know that remission occurs with Lupus, and I've read that is can also occur with MG. Have any of you gone into remission? If so, how long did it last?

Are there certain steps for a patient to follow, such as diet, exercise, etc. that an MG patient should take to help with the disease? I know with my Lupus I stick to a pretty healthy diet. I exercise (lightly) and try to avoid the sun (but I LOVE the sun). My biggest downfall is smoking.

Thanks again for everyone's help! I'm passing everything along and using your input to help as much as I can.

Hi,

I am one who has had lots of problems with both vision and oral motor skills. It is VERY scary, and I actually had to have the Heimlich done twice by my hub and I did it once on myself when I was eating at home alone. Please make sure everyone in the home knows how to do it and if you have to do it, don't panic. It really DOES work! (Now let's hope your FIL never needs it!)

I would suggest switching to "nectar" consistency foods---smoothies, fruit slushes, etc. You can add nuts to the smoothies for extra protein. Scrambled eggs, mashed potatoes (whipped to a fluff), cottage cheese, yogurt, etc, all may be easier to handle. Cooler works better than hot, and very cold foods can also be problematic. He will have to find what works best.

If your FIL begins to have difficulty with handling his saliva--unable to swallow it, drooling, etc, he is in crisis, and needs to be seen immediately. When I went in for my reboot, I had been off of all drugs for 2 weeks. I was so weak that my palate wouldn't even lift to block my airway, making it more or less a straight "chute" from my mouth to my lungs.

As for the mestinon, it doesn't sound like it's enough to me. I never used it, but I would sure run these symptoms by the doctor as he should be showing at least some improvement from the pred by now.

As for remission, it doesn't happen very often. I know of a few cases, but most are able to "manage" things with a few adjustments and then others (often those on message boards) struggle for the longterm. As for me, I had a particularly rough road, but had chemo to reboot my immune system. Even though I'm SO much better now, there are still remnants of MG (and the chemo that helped me so much) that I deal with on a daily basis. I would use caution with the offering of false hope.

Good luck.

Khrysse - have your FIL look into a Gluten-Free Diet; many people with MG have found that some of their symptoms are lessened when they eliminate gluten (wheat, barley, and rye) from their diet. Be warned, though - there is no such thing as "a little gluten"; a GFD means NO gluten whatsoever. (He may want to get tested for Celiac Disease before he tries it - a positive CD diagnosis means he will need to be on a GFD for life; a negative diagnosis doesn't necessarily rule out CD/gluten sensitivity, however)

Thankfully, the Gluten Intolerance Groups and Celiac Disease Organizations have done a fantastic job of educating doctors, food manufacturers, and restaurants about how common gluten intolerance is, and there are more and more items coming on the market every day that are gluten-free. It isn't as hard as many make it out to be (our youngest daughter was diagnosed with Celiac Disease 2 years before my MG diagnosis, so I was already on a GFD), and many people actually find that they feel so good on a GFD that they have no problem staying on it.

Everyone has given you really good advice...I just wanted to add that if he's having trouble swallowing, he may need plasma exchange or IVIG. Also, be sure to watch his blood glucose--I developed diabetes after several months at 60mg of Prednisone. It would probably also be a good idea to take something for thinning bones if he's going to remain at that high a dose. I take Boniva every month (when I remember).

I had the eyelid problems, too, so I know how frustrating it can be. I'd be sitting in a meeting and suddenly wouldn't be able to open my eyes.

Hang in there. Hopefully things work out.

Ive been on 40-50 mg of prednisone a day since i was 18 which was about 4 years ago and this week Im having my second eye surgery (my first one was the other eye last week). I have steroid induced cataracts.
Other than that, I now take ambien every night from the insomnia, I get cramps in my calves, and I have slight tremors.
Even with all of this I still feel its better than being without. Prednisone takes away my double vision and my MG is pretty much under control with the agressiveness my doctors have been attacking my disease with now

my husband experienced the exact same response...now on 15 mg every other day hoping to get off the prednisone soon otherwise just on cellcept: