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...
When diagnosed with MG about 9 weeks ago, then starting prednisone, my doctor said we would taper up from 20mg , 30, 40 etc, because I was a pre-diabetic (i.e 100 fasting blood glucose, 160 random...).
My blood sugar has risen into the 115 morning fasting and as high as 275 after a few hours after a meal.
I have cut out the sugars and tried to limit starches, but am starting to have some of the diabetes signs including frequent urination at times, blurry vision and so on.
The prednisone has not yet done anything that I can notice--so am using Mestinon to keep functional. My doctor counsels patience at the lower dose rather than bumping it up--and that we might think about alternatives to prednisone.
So, my question: When do you start taking treatment for diabetes? What do you take (i.e metformin). Or do you get off of prednisone or lower the dose?
My approach for the coming week is to try to be even more careful with my diet in the hopes I won't have to add any diabetes treatment. My doctor is OK with me trying the diet restrictions and seeing if that helps while continuing the 40 mg prednisone.
I am a maple syrup producer (sort of big hobby level) so giving up pancakes, french toast with pure maple syrup has been a blow!
My blood sugar has risen into the 115 morning fasting and as high as 275 after a few hours after a meal.
I have cut out the sugars and tried to limit starches, but am starting to have some of the diabetes signs including frequent urination at times, blurry vision and so on.
The prednisone has not yet done anything that I can notice--so am using Mestinon to keep functional. My doctor counsels patience at the lower dose rather than bumping it up--and that we might think about alternatives to prednisone.
So, my question: When do you start taking treatment for diabetes? What do you take (i.e metformin). Or do you get off of prednisone or lower the dose?
My approach for the coming week is to try to be even more careful with my diet in the hopes I won't have to add any diabetes treatment. My doctor is OK with me trying the diet restrictions and seeing if that helps while continuing the 40 mg prednisone.
I am a maple syrup producer (sort of big hobby level) so giving up pancakes, french toast with pure maple syrup has been a blow!
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Mary
You might actually find that some of the foods you like aren't as bad for you as you might think. I've been surprised to find that roughly equal amounts of carbohydrates have different effects depending on what food it is. For instance, I've found that rice noodles really bring the blood glucose up. Bit that's just me and you might find differently for yourself.
Why not try having your day's carbohydrate in the morning before you take your prednisone or at he same time. The effect of prednisone on blood sugars is max about 4 to 10 hours after taking it so that afternoon and early evenings are the bad time for sugar elevation. The difference can be dramatic.
If you feel you must have some carbohydrate later in the day get it from beans (lima, aduki, soya, canneli, etc, - buy them dry and soak before use)or peas (regular, chick, blackeye etc -again some will need to be rehydrated) since they are slower to release sugars than wheat, rice or potatoe foods and can produce lower spikes. If you already have shown the will power to give up pancakes and syrup you obviously have the will power to do it.
Just increase the protein to make up for the missing carboydrates and keep the fat as low as you can. If you need to resort to proetin powders like the musclemen then do it. I found quark and low fat fromage frai useful ( I don't know what you call them in America, possibly the same, they are both very low fat very low salt dairy products) but they enable you to get a healthy high protein diet without increasing fat or salt both of which are bad for people on prednisone).
Excersize also helps control sugar elevation but advising that to someone with MG can sometimes be as useful as advising an octopus to take up flying. Nevertheless, the more you can do the better the contol of sugar elevation can sometimes be.
I was prediabetic when I went on prednisone but the change in eating shedule and diet elimated that and allowed the prednisone to put me into remission. It also let me lose 50lbs of fat without losing significant muscle. There are no signs of sugar issues at all now.
Stick with the prednisone as long as your doctor recommends it. Start regarding food primariy as fuel for a healy life for a few months and you will contol many of the side effects of prenisone.
Good luck.
Gwyn
Gwyn
I tried Mestinon up to very high doses two different times and it did absolutely nothing for me. I've now been on prednisone along with trying cyclosporine and then immuran for a few years, and I hate it. I hate the weight gain, the constant hunger, and the extreme risk for diabetes.
I noticed that a lot of people on this board have said that keeping a good diet while on prednisone helps a lot. I do not understand how all these people can do that or say that anyone can do it. When I was seeing a nutritionist and losing weight I started on prednisone, and got up to 15 mg and was still doing well and losing weight. However, when I had to go up to 30mg I started gaining and feeling starving all the time. I gained now matter what or how little I ate, and I would sometimes have food in my stomach and eating more food in my mouth and STILL feel the painful starving feeling in my stomach.
So yes, it MIGHT be possible to keep your weight and blood sugar down by dieting while on prednisone, but it is not guaranteed, or a question of willpower alone. I'm trying every drug I can to get off of prednisone for good, and I think everyone else should too.
Read TJ's posts to see how to avoid prednisone by using Cellcept alone. He's done great but its much too hard a path for me.
Sure prednisone makes you ravenous but you cannot put on fat unless calories going in are greater than those going out. You can put on water weight though but that can be effectively controlled by cutting out salt. Nobody says its easy to avoid weight gain but enough people manage it show it is practical. After all, nobody holds you down and forces food down your throat like a goose raised for fras gras. It is ultimately a matter of choise that we all have faced.
One thing diet control will not help with is fat moving from the limbs to the trunk. Just got to put up with that one.
If you have to eat just to keep the hunger down eat raw carrots. It's really hard to get fat on carrots especially if MG makes chewing difficult.
My blood sugar is better with the stricter carbo restriction. My mestinon does not make me feel normal, just makes me able to get through the day breathing, seeing, and a little walking. I will keep taking prednisone to get at the root cause of MG--but likely keep it at 40 mg per day indefinitely with the hope that it will work at that level eventually.
I have not gained any weight so far. I had been on a plan to lose 25 lbs in 2012 and as of the halfway mark had gotten half way there, but have stuck at that for two months now. Hopefully if the prednisone gets working I will be able to get physical again and do some more walking and gardening--right now with the heat and MG, I start puffing with very little exertion and can't seem to do much.
Anyway, this week and next week are all about my wife, Margo. Today we find out the extent of the cancer, and then start finding out about the treatment plans and probably she will start the breast cancer treatments at the beginning of August. We will both be taking it easy for a few months as things evolve.
Please let us know how you two are doing when you can. There is a lot of waiting in waiting rooms, I've found it a good time to "hold someone in the light" and you might catch us up with your status and questions there.
You two are on my "list." Hugs, b.