hey-i've been diagnosed generalized even though all tests are neg.since my d vision is almost gone on mestinon.had a few issues geting used to mestinon ,am now on 90mg tr bid. on prenisone for throiditis so will wait to increase mestr. spent 1 good hour with re neuro who suggested that i soon change to imuran since it takes 6-8 months to start working. i have some new ?s that i just thought of #1 do you still take mestinon withit, #2 how do most people react to it-often with side effects #3 is it a test can be measured in blood test#4 how do any of you feel on it or about it??? thanks have a great sat/sun!!!

Goodmorning!!

I use to be on imuran, but am now on cellcept, as it works better for me. Everyone is different regarding how each drug works for them!

#1 Yes you still take mestinon, I tell my family this is my "muscle tablet", it helps my muscles work(an easy way of telling them what its for) Mestinon gives you a boost, I still take 2 a day, one in the morning and one at lunchtime.

#2 hmmm side effects, from what I can remember I lost a bit more hair than usual, and maybe made me a bit sick, but its hard to tell whether that was from the other drugs as well.

#3 Not sure about testing for it in the blood

#4 My neuro decided to change me from imuran to cellcept because he didn't think it was working as well as it could, but I do know people who are doing well on it!

hope this helps a little, have a good weekend
Kate

Hi Xmas,
90 mg/d of Pred is a pretty high dose,(1 mg/2.1 pounds of weight?) I hope your neuro gave you some advises for your food diet to cope with the steroids? Watch out also for you eyes, have them checked regularly for cataract (you will notice it!) and for glaucoma (you won't notice it!).
It is good therapy for generalized MG to take Mestinon, as Kate mentioned it, Pred ( fast acting ) for some time and an immunosuppressor (slow acting). After a while, Pred is tapered to a minimum (hopefully zero) and you're left with Mestinon with a dosage appropriate to your need and the immunosuppressor.
Maurice.

sorry i forgot the comma-it's 90 mg mest treleased, not 90 pred. i'm only on 40 mg per day of pred for 1-1/2 wks then 20 mg for 7-10 days then 20 mg once a day for 1-2 wks depending on the swelling ,pain and voice loss from thyroiditis. the drs both said most people who get thrroiditis only get it once!!! this is 3 rd time second time with voice loss for at least 10 days and needing steroids vs high doses of ibrophen[sp] i also have a few days of low throid and a few days of high. i know because my temp which runs normally 98.6 was never above 97.5 for 5 days i thought i was having fever starting one day ,took temp and it was 96.2!! kept track for 5 days even when i was sweating it was only 97 degrees!! gained 10 lbs in 10 days then lost 4 in 1 week ,felt like i was on speed 2 other days [hyper thr] i've had enough of this uncontrolled crap!!!!!!! i don't mind being sick[better me than my kids] but i want to learn about it ,control it and get on with my life even if it's changed yet again!!!!! another ? since our immune systems are off balanced and in over drive- are we more prone to germs and infections? i don't work anymore from another disability so not exposed to large groups on regular basis and kids are grown and gone. it's a beautiful sunny day outside in northeast usa so i'm going outside to do something. don't know what yet but bye for now!!!

Hi xmas,

Sorry, I can't help you with this one. I've only taken mestinon and no others by choice. I take synthroid for hypothyroidism, but could you please tell me what throiditis is? If you don't mind. There has been quite a few posts about imuran lately, so I'm sure many here will be able to help you. I hope you are feeling well. Enjoy the rest of the weekend! Take care.

Hugs,
Pat

it's when your neck [lower part]hurts like a sore throat but when you drink something cold it doesn't help. remeber when your mom gave you ginger ale for sore throat -it felt soo good. this is a very painful neck isn't made better with narcotics at all but 800-1000 mg of ibprofen helps,it doesn't feel scratchy when you eat,i lose my voice and go from hypo to hyper thyroid and back again during the process. 1st time i spent 5 wks on predinisone till it cleared,in dec 2008 it happened again but no loss of voice and didn't need pred.now it's been 3 wks and i went right to dr who agreed on the pred and had labs drawn to see if hypo of hyper.

Hi xmas! I am on Imuran right now - have been for months now.....love the stuff! With my monthly IV IG and Imuran I have been reduced to 20 mgs a day of pred. There will be bi-weekly tests to check your kidneys/liver - just in case. Yes, you DO still take Mestinon with it. IT "masks" the symptoms when you feel crappy. I still take 2-5 daily - depending on how I feel.....
I have had no side effects so far @ all and have been on it for 5 months or so.

THe "goal" is to get you completely off the pred and on Imuran and Mestinon full time. Then you will able to lose weight and not have the nasty side effects of pred........

I love Imuran! It scares me a lot less than Cellcept!

Big hugs!
Erin

good morning! lose weight-i'll do it!! i went to dr last week and she had dropped about 25 lbs[my guess] her comment was she found a new way to lose the extra lbs.- diet and excercise at the same time!!!! what a novel idea!! and you had to follow the program not just read and think about it!!

Xmas ~ I have been on 100 mg of Imuran since December. The only side affect that I am fully aware of is hair loss. My doctor did tell me that it could take 6-9 months to really kick in. So I guess that I am just now entering that stage. I am being tapered off of pred. and I take mestinon 60 mg 4-5 times a day. Take care ~ Melanie

I have never heard of Imuran. What does it treat? I'm on Mestonin three times a day (60mg). I was just to my arthritis doctor and found out I do have a form of arthritis. They are just waiting for the CCP blood test results to come back. If it comes back postive I have the beginning of Rheumatoid arthritis. If negative, it's psoriatic arthritis. I'm thinking I have the later, because I have no symptoms of RA. I'm always stiff at night and my neck is always on fire and stiff and hurts. This on top of having MG. Life is just peachy. Guess what, if I have psoriatic arthritis, the best thing you can do is exercise. How do you do that when your muscles tire out so quick??????