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-   -   imuran... (https://www.neurotalk.org/myasthenia-gravis/176290-imuran.html)

sunshine_13 09-11-2012 11:14 AM

imuran...
 
Yesterday was one of those days where things are so bad you can't help to ask WHY ME? was I Hitler or some horrible person in my past life that this is my karma? /:

I was taken to my neuro by my little sister because i had to ask her to help me get up from the toilet, and i couldn't talk to swallow anything! :'(

I was there LITERALLY 5 minutes, he asked me what was wrong - if i was taking any other meds, gave me a prescription and scheduled me for a follow up on October 17th.

I felt like he was dismissing everything i was saying...
i told him about losing 20 - 25 lbs and he said he would do bloodwork on my next appointment!

i was prescribed imuran (i'm currenlty taking mestinon every 4 - 5hours)

so my question is...
what can i expect with imuran? what is it supposed to do? any side effects?

If i had health insurance i would switch neuros but new patients first appt is almost $400! :( :(

Stellatum 09-11-2012 01:35 PM

Oh, this is a terrible story. You sound really sick. I can't believe he dismissed you so quickly. Please don't be afraid to go to the ER. You seem like you need some emergency treatment, like IVIg, or at least something that works fast, like Prednisone. Also, don't hesitate to call back (or have someone call for you!) and say, "I just saw the doctor, but I am worse. I need some emergency treatment. I can't swallow or get up without help." I have often found that asking for help a second time gets a response when the first request doesn't.

Imuran is a drug that suppresses your immune system. The thing is, it can take months before it starts to have any effect. Six months is typical. A year is not unheard of.

I am on Imuran and haven't noticed any side-effects, but other people have nausea or lose their appetites.

At the very least, you need regular blood work while you're on Imuran to make sure it's not affecting your liver or platelets. Many doctors recommend that you have a blood test before you start the Imuran, to make sure you can metabolize it.

I hope you can find a way to switch neuros. The price may officially be $400, but no one pays that. The neurologist has a contract with the insurance company for a fraction of that, and if you ask, he will almost certainly give you a self-insured price.

Abby

Quote:

Originally Posted by sunshine_13 (Post 913610)
Yesterday was one of those days where things are so bad you can't help to ask WHY ME? was I Hitler or some horrible person in my past life that this is my karma? /:

I was taken to my neuro by my little sister because i had to ask her to help me get up from the toilet, and i couldn't talk to swallow anything! :'(

I was there LITERALLY 5 minutes, he asked me what was wrong - if i was taking any other meds, gave me a prescription and scheduled me for a follow up on October 17th.

I felt like he was dismissing everything i was saying...
i told him about losing 20 - 25 lbs and he said he would do bloodwork on my next appointment!

i was prescribed imuran (i'm currenlty taking mestinon every 4 - 5hours)

so my question is...
what can i expect with imuran? what is it supposed to do? any side effects?

If i had health insurance i would switch neuros but new patients first appt is almost $400! :( :(


GUMBY 09-11-2012 02:06 PM

Can you get to a MDA clinic near you...correct me if I am wrong but I think they are free. Or go to the emergency room. Your genius of a neuro I hope at least did liver function blood test and the blood test to check if you can take Imuran. I forget the name of the test but it should be done prior to starting Imuran. Again, you sound sick and if you can't swallow go to the emergency room.

TPMT is the name of the blood test.

StephC 09-11-2012 06:48 PM

I think you are in fort myers, right?

I go to USF Neurology department in Tampa. I have insurance but I have a former client who I know has no money and no insurance who told me he has received a lot of treatment there in past couple years so it is possible.

Overall I am impressed and happy with USF enough such that I fly up there ffrom fort Lauderdale every 6 weeks. I have been seeing dr. Clifton gooch, he is the chair of neurology department. My first appointment took 2 months to get though.

By the way I am taking mestinon 60 mg x 6 plus 180 at night and dr just started me on 10 mg of prednisone day. I was responding to mestinon but that was only getting me to about 35% functioning.
The 180 was added after I asked in between appointments so perhaps you can call, email your doctor and ask he consider whether or not adjusting your dosage could help


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