Myasthenia Gravis Support Group

Hi, I'm on prednisone 50 mg daily and Mestinon 180 daily. Anyone on these drugs have advice ?

The side effects aren't so bad...yet. And, the drugs are helpful. I hear Prednisone gets worse with time, and I may need to be on it for 1 and half years total for occular MG. Do the side effects get worse? Has anyone found that staying on it for over a year has been tolerable? Anyone willing to share the side effects, or what drugs they added to the above that were helpful ?

Thanks !

Meg

Another question:

Anyone find it helpfful to

(a) take Prednisone all at once ?

(b) split the dose to 2 or three times per day?

I take my mine all at once (I'm down to 15 MG now). My highest was 40 MG and I took it in the morning, especially because it would keep me up.

Leah

I've been on prednisone for about three years and am trying hard to get off of it because of the long-term side effects. I am hungry all the time now!!!

be sure to eat when taking prednisone cause it can cause nausea.

quilter

hi! my mum was recently diagnosed with MG she is taking mestinon and prednisone 20 mg every 8 hours.. the doctors adviced us to reduce the intake to every other day.. so what am doing right now is tapering her prednisone intake.. i was wondering if mestinon and prednisone can be taken at the same time coz it leaves my mum less sleep because its her mestinon is taken every 4 hours and her prednisone every 8 hours .. i want to adjust the time for her prednisone so she can take it at the same time as mestinon.. any thoughts on this?

i take mestinon and prednisone at the same time and am fine. i take both in the morning and mestinon throughout the day. be sure to take with food - otherwise, it hurts my stomache!

leah

hey guys, ive been put on prednisolone and am building up th dose to 25mg im currently on 15mg, i also take mestinon every 6 hours. My question is why are things so bad in a morning no matter what the previous day was like, and can i ask the doctors if i could have a thymectomy xx thanks guys

Time release mestinon at night might help the mornings to be better. Ask you doctor about it and check to see if that affects your frequency of the regular mestinon. My neuro ruled out thymectomy for me since there isn't any enlargement of my thymus and I'm over 50. I haven't researched it much but I know some people swear by it.

I was on 60 mg every day for 2.5 years when I was a teenager. Prednisone and a teenage girl don't mix well. My hormones were off, I was moody, had just about every single side effect possible. I'm still suffering from hypoglycemia and it's been almost 10 years since going off it. Since my relapse, I told my neuro that I'd refuse to take prednisone because I have such a bad reaction to it. It was during the time where mestinon stopped working and I was starting imuran so I needed something to help it along. Take with food. You'll gain weight. That's normal. Don't get discouraged because you do lose the weight once you get off it.

Madeofstars- If you feel like you'll benefit from it, definitely talk to your doctor. For me it wasn't a question. It was almost mandatory as my thymus was so large. Do you know if yours is enlarged? It was the best decision that could have been made for me! Though it took awhile for the thymectomy to kick in, I felt relief a few years after it was done. My surgeon was excellent that he managed to get all the thymic tissue out of my system that I don't have any regrowth. Now we're just trying to figure out what brought on the MG again....

Good luck Meg and Madeofstars!