hi its been a while since ive here
my Neuro put me on Imuran about over 3 months ago i had a bad reaction but thought it would get better and not bad anuff to tell the Dr straight away
and the idea of comming off the preds kept me wanting to carry on
but the symtoms only got worse pain in the wrists and knees diferculties in walking legs having burning sensation pounding headaches any way my Neuro has stopped the Imuran 2 weeks ago and i'm reducing my preds as well
from being on 12 every other day to what he hopes will be only one
and may try me on a dif drug but whats strange is ive the same symptoms as when i was on that drug its been now 2 weeks maybe it takes a while i'm seeing my own Dr in a few days to see what he thinks
alan

bummer! sorry to hear that. i just started today. 50 mg daily along with the 6 pred i had been taking. so far, so good. my neuro wants weekly blood for the first 3 weeks due to possible complications. he said he's had good results with it but it's not for everyone and can be dangerous in a few cases. any alternative to 6-8 mos. on steroids was attractive to me. my responses to treatment/tests have been fairly predictable so far so i guess i'm a good candidate. i'm going to be watching for the side effects you described.

Hey Alan,

My bulbar symptoms have gotten really bad since having my thymectomy, and I saw my neuro. on Monday....She told me to increase my prednisone to 80 mgs (from 60 mgs) per day and start imuran...I'm very worried about doing this since I've been on prednisone for three weeks and haven't noticed much improvement...Especially now after reading your account re. the imuran...I'm also taking a ton of mestinon...it's just too many pills for us to handle, isn't it?

Were these symptoms of liver problems that you experienced? I'm sorry that the symptoms are taking a while to go away...It might take a while for your body to get back to normal...I hope you have a speedy recovery!

Nicky

P.S. Today, I forgot my mestinon at home today and was only able to take 180 mgs plus a 60 mgs tablet as opposed to 180 mgs and 3 x 60 mgs...My symptoms were much better today...Not nearly as weak as usual...Sometimes, I think that the docs. keeping us on the Mestinon along with the immunosuppresents can cause things to not get any better...

Yes, I think it will probably take awhile for the side effects of the med you describe to go away. Many meds for neuro or psychological problems are that way. Blood levels have to go down. May you have the best outcome possible. Blessings ~ billie

So sorry you are having a rough time of it.

Maybe they will be able to try you on another drug like celcept (sorry if I have spelt that wrong). Your neuro will probably want to give your body a chance to recover first.

I really hope you feel better soon.
Love
Rach

Alan
It takes awhile, but your doctors will find the right stuff for you, starting out is like a drug roulette.
So sorry you have had a bad set back, I know it takes months to get the drug out of you system, but you will feel the side effects going away little by little.

Mary

Remember.. to much medication makes your MG symptoms worse. Thats one of the ways I found out I went into remission, I was getting worse and finally demanded the Dr.s take me off my meds so he agreed to wean me off and waa laa. I was in complete remission. So if you feel your meds are making you worse it can't hurt to have your Dr. lessen the amount of meds.. it is all trial and error it seems with us. I think of you everyday and I hope things improve soon.

Alan, I'm sorry you had to stop the med. I agree, maybe it was working and making you better, so backing off the Pred is good. I'm glad you are seeing your neuro. Maybe he can work it all out. Why can't they make meds with no side effects?! And, yes, it can take awhile to have the effects of a drug out of your system. Everyone is different.

I hope you can do something fun to get your mind off it all.

Annie

thank you all for the understanding
saw my Dr today who is pleased with how i'm coping i think that helps if your Dr is on your side of understanding he thinks i will have to wait and will see him in a months time he doesn't want me to reduce my Pred's less than 30mg which will be harlf what i'm taking now so will keep trying to stay happi
hoping my weight will come down as well hate being so big

alan

Alan
I am agreeing (from experience) with JoanMarie about symptoms getting worse with too much medication. My doctor started me out with a too much Mestinon and I had a terrible experience worse than my initial symptoms. I felt better within a few hours of skipping a Mestinon dose and have since reduced my dosage. I am only taking Mestinon so my experience my differ from yours.
When I had the overdosage my experience started with a tightness in my ankles and forehead, tight muscles that kept getting tighter everywhere, and then pain in all my muscles and mostly in my ankle and forehead where the tightness started. I had a hard time bending my legs and felt like frankenstien. Such a relief to reduce the dosage of Mestinon.

I hope you are feeling better.