I understand how you feel. It's very frustrating to not be able to do everything we enjoyed before, not to mention that you just don't feel good.

I took only 20mg of prednisone and never really gained weight, however my weight shifted to my neck, face and belly. Now that I am down to 5 mg, the moon face is gone. If I had to do it over, I would still take the same treatment. It helped me feel better quicker than waiting for the Imuran to kick in.

You are allowed to have a pity party. We've all been there! Hang on, it will get better. Stay close to this group; you will find friends here.

Yea the weight thing is tough.
I have to go to weight watchers just to maintain my weight. I do really well and then bam....up again.
It is depressing. I have to drink more water but I can't seem to do it. I know that will help.
This weekend I told myself...I want a new body.
I am with you...we need to get ourselves under control.
Ann

THE WEIGHT THING WAS A PROBLEM AT FIRST BUT THEN I WENT ON A VERY LOW CARB NO SUGAR LOW SALT DIET. CABS NOT MORE THAN 60 GRAMS PER MEAL THE WEIGHT DID COME OFF MOSTLY AND SINCE I AM ON A HIGH PROTEN DIET THAT HELPS.
GOOD LUCK

There are steroid sparing drugs you can use instead of the prednisone. Are you a candidate for those? Would he also consider maintenance IVIV or plasmapheresis or at least until the steroid sparing drugs kick in?
I can not take time released mestinon. The amounts released fluctuate too much for me and my symptoms. My neuro lets me tweak my mestinon as needed through out the day, depending on stress and activity level. I generally take 60mg every 3 hours while awake but sometimes need 90mg or can space out to 4 hours.
Hang in there.
Hugs!
-sherry

Let me just say that, for me, steroids have not been that bad! Sure, they have side effects, but as far as weight gain? I've put on maybe 8 pounds, but I was actively trying to gain weight; I was very underweight from a year of being unable to eat properly when just taking mestinon alone. You aren't doomed to massive weight gain with prednisone. :) Also, I wish I'd started prednisone way, way earlier. It has really helped me a lot, and all the side effects I was so afraid of have been less severe than I expected. Don't suffer for no reason!

Thanks for sharing your thoughts, and wishing you all the best going forward.

time release messtinon never worked well for me. has your doctor mentioned the generic version (pyridostigmine bromide) with doses of Prednisone? in the early stages there is a lot of trial and error with your body's reaction to the meds. the long term effects of taking steroids is your body can't function without it and takes a long time to reproduce in its own. you HAVE to take it easy for now and keep your stress levels low as possible. make sure you keep positive support around you. as far as the weight loss goes, I recommend a low carb high protein diet. I drank a lot of protein drinks during my lowest point and lost 30 lbs in a month because my facial muscles would tire and I couldn't chew and swallow solid foods. find one physical activity you like and try it when your body is at its best. keep moral support around and it will mentally be empowering even if you physically have trouble completing it.

it's good to release all the bad feelings and when you are feeling down come to this board. my journal and just knowing somebody understood what I was going through helped me a lot. we all have to deal with this and knows what it feels like. sometimes people just don't understand what we go through with this disease.

I want to thank each of you for your encouragement, support and advice! Your responses, have for sure given me things that I can talk with my neuro about.
One of the things I wonder is that are treatments different for me, such as the IVIG and plasmapharesis due to the fact of me not testing positive for the antibodies? Anyone know?
:)

I think the treatment is the same. They used plasma pherisis for me when I had crisis and ivig when I had pneumonia ..
They are both very expensive and more involved to me.

Fellow Gardener, I hear your grief at not being outside digging in dirt and planting. Before Is tarted medication my husband had to take over the gardening for a year. Holdinig up clippers was impossible and I could only enjoy it by sitting with my feet up but i still enjoyed watching the butterflies in the gardens and the birds feeding off the nectar.

For me the magic happened after my dose of mestinon went up. I ended up on 180 mg. long acting at 7am and 7pm. I take 60 mg of pyridostigmine which is shorter acting a 7 am 2 pm and 7 pm. When I am active in the garden, always in the mornings before the heat, I take an extra 30 mg. every two hours, before working and after. It is what gets me throigh. You are on a very small dose of mestinon so maybe your dr. will agree to have you try more.

IT is always a trick to find the right meds when you have more then one condition going on which is true for most patients. I have also found I can tolderate some meds that compete with acetylchoiline if I increase the dose of pyridostigmine. I have had to do that many times when on antibiotics and pain meds. I hope you and your doctor can come up with meds that will work for you and you can spend more time in the gardens. Don't give up, it takes time to find the right combination and your pyridostigmine needs to be titrated to activity.

Good luck with this! Marie

Marie

Particularly at the onset of my Dx weight gain was an issue along with mood swings. I agree with Chuck as high protein low carb lot of water was and still is the answer for me . Different side effects for us snow flakes and the moodiness generally occurred when I was on higher doses and there wasn't a lot I could do for that except to get to lower mg..

Hang in there , Cj

HUGS!! Kelli, we all need a pity party now and then. This disease can be really difficult to adjust to, it causes such swift life changes and can make us feel very helpless. Over time, myasthenia teaches us what things we can (have energy to) fight for, and what we just have to accept. The weight thing is tough, for sure. I would offer you encouragement to think of your MG treatment in phases - if you start steroids, it doesn't mean you'll be on them forever. If they're effective, your neuro might eventually taper them and move you to longer-term immunosuppressants (if appropriate given your other conditions). Or might try IVIG or plasmapheresis. I did gain a bit of weight (and definitely saw the weight shift) on prednisone, but also dropped the weight when my prednisone level decreased.

A couple of tactical suggestions, to help feel more in control of the weight thing. First, exercise - if you want to try it, do it at night, so it doesn't ruin the rest of your day. Do really small amounts until you see what your new threshold is - a few minutes here or there. My neuro said stationary bike or swimming have been the best for his MG patients, in terms of types of exercise they've actually been able to sustain. For healthy people, the research says to not increase your overall load (speed, time, effort) by more than 10% per week - I would argue that people with MG should have an even slower increase.

Second, food - agree with others about low carb/high protein. More specifically, I've found it incredibly helpful to really focus on a lot of vegetables (things that are very nutrient-dense), and avoid sugar (which causes inflammation - bad for autoimmune conditions). Tactically, one of the most important things with MG (and weight) is making sure you have healthy food around that's easy to eat when you're too tired/weak to spend time cleaning and preparing it. My diet is the worst when my MG is really bad, because I'm too tired to care about eating healthy. I have to think and plan ahead and ask my husband to help me stock up on options that require minimal effort on those super weak days.

Kelli , venting your frustrations with MG is not a pity party . We need each other and that is the reason for the room . MG can make cruel changes to our life. Hugs , health , and answers to you , Charlie