Drug free remission besides thymectomy
 

Hello all,

Does anyone have any information on sustained drug free remission with MG, especially people who have been on a combined treatment of prednison and azathioprine for a few years. Or is there anyone who has been on azathioprine for a few years or longer (5,10 or 20 years) without significant side-effects? And are these cases very rare (in minority) or very common. I am unable to establish this from my neuro as they all seem to focus more on the short to medium term....please help??:confused:

I was on Prednisone for about a year to the date. During that time I was also taking Mestinon. I have been off prednisone for about a year and a half(besides the times I take it for other reasons). I am currently only taking half a pill of mestinon every once in a while. My neuro told me it will be a medication I will have to take for the rest of my life. I think I will be ok with just taking half a pill every once in a while lol. I am back to full strength. The only reason I take the half a pill is because at the end of the day sometimes I get a bit fatigued.

I am not sure how common it is. Right now I am in a study to try and figure out if treatment with just medication is enough. My stats will be compared with another individual in the study who has had a thymectomy and is receiving medication. I think MG is just so rare that it is hard to tell what is the proper treatment.

I think your neuro isn't telling you anything longterm because MG is fickle. You never know how you will feel the next day. Your treatment could be going really well but the next day it could all change. I have just learned to go with the flow. You will have your good days and bad days. You just have to keep your head up. :o

thanks for your reply! Interesting that you were on prednisone and not any of the other immunosuppressants also...maybe you have a milder degree of MG...my wife's was rated at IIb (mild with bulbar symptoms). At least you're lucky that your med requirement is quite low, lets hope my wife ends up in a similar situation..all the best, Ricardo:wink:

hi Ricardo
 

heres my short story, , at age 14 i was diagnosed with mg generalized mg which i have it all over and occular and put on prednisone, a drug your not to be on for a long period of times, then i was on prostegme ( better look up corecct spelling ) that was for about 2 yrs in which they then put me on mestinon 60 mg i was taking about 10 or so a day later with mestinon timespan 180 mg for bedtime- it helps thur the night and not have to take a mestnon 60 mg i was having a hard time i was 16 yrs old, then at 18 i was advised to have a thymectomy thats what they knew in 1975 ( ooh make me sound old lol) it did help me and from 18 yrs old to oh about 35 yrs old was on mestinon 60 mg about 12 a day and timespan) what i did not know i was overdosing myself with all that mestinon and no my neuro at that time did not tell me any thing different not to take less) i was doing pretty good at times, but as time goes on when i was sick with a cold i would have a very hard time breathing and i would have to sit up againt the wall to be able to breath becasue i could not lay down and with a snuffuing nose and muccus in your lungs cant cough it out very hard for a person with mg so anyway yrs went on like that becasue i thought that how it is with mg and at that time my neuro i had did not know of immunosuppressants or did not think of it not sure i did not know myself,so about 1989 GREAT NEURO) if anybody needs one in redding ca i got one for ya- i got a respitory infection form a child i was visiting at someones homes at christmas and did not know the child was that sick, so in one day i got the infection i was at home could not hardly breath had to call paramedics to come to the house they check my oxygen was way low took me to the hospital there i had to be on breathing machine- for 9 days then my new neuro had me have a plasma exchange to take out my old blood to see if that help me recover form the infection along at that time advise i be put on immunosuppressants i did not want to but what do you do when your in the hospital and tyrying to recover and thinking this can happen again with your immumne system fighting yourself, so i did and within a week i felt my breathing so magnifisat i was so happy of the choice i made even knowing the effects drugs can do to you, even with that it was 10 yrs later on cyclosporine(sandimune) i had to be taken off it cause kidney damage, well i was a little upset but i knew it could do that but you dont think things can happen but they do, and now i chose to take aza knowing what effects it can do but being able to breathing walk talk eat laugh over rides the bad things it can do and makes me more scare knowing what can happen to me if i wasnt on aza or a immunosuppressants , been there done that and its scary and im not trying to scare you with info but just got to fine out the good and the bad and make choices whats right for each person. knowing mg bodys immune sytems fights agaist ones self and casues you to not be able to breath- swallow walk , im happy with my choice and you will just have to look up or hopfully people have the answers your looking for.:) since i moved from ca i was scared to have to fine a new doc but my nuero from ca. gave me a name here in reno and been with him now 8 yrs and fantastic nuero. as koilover512 says. have to go with the flow,, some days are good some are excellent and some are slooooooooooooooooooow with faituge linda

Hi Linda,

thanks for sharing your story. I am glad things are going much better for you now and you seem like a very strong person! So did they take you off Aza? How long were you on it and why did they take you off?

All my best wishes to you, :)

Ricardo

hi ricardo, no i have been on aza now 2 yrs and doing well, they took me off of cycolsporine another strong immunosuppressants that i was on for 10 yrs.
and ricardo , what a great husband you are looking into things for your wife, and yourself..

:) Hi Linda, glad to hear things are going well with the Aza. My wife is basically my life and I will do as much research as I can to make things better for her. She is going to start Aza or Methotrexate on 18 Feb (on prednisone and mestinon at the moment) so hold thumbs that whichever one is chosen agrees with her...Please do keep me posted on how things are going with you ;)

Hi Ricardo,
I was dignosed at 25 after my 3rd son was born. I did have a Thymectomy when my son was 5 weeks old. It was painful and scary, but it did help. My breathing troubles have gotten much better, and the progression of my MG has slowed. I have geberalized with bulber, occular, pretty much everything is affected. I am considered moderate to severe. I was taking Prednisone, up to 25 mg a day, but I kept getting infections which was making my mg much worse. So now I'm down to 5 mg Prednisone, 6 60mg mestinon, 2 180mg timespan, and 3 azathioprine a day. I also have monthly IVIG infusions. All of this and I can't clean, can minimally cook, and basically sit around waiting for a good day to get out of the house. I know the aza is scary sounding, I've been on it about 4.5 months, with no improvement yet (it takes at least 6 months to kick in). But something I've learned over the last year and a half, having a healthy life, with a good amount of strength is very important. I would recommend any medicine that would help your wife get as much strength back as possible. This disease can send you into a deep deppression, so i would also strongly suggest anti deppresants and a therapist.

How long has she been sick?
Jessica

Ricardo,
I was diagnosed with MG at 16 years old. Had 2 thymectomys One when I was first diagnosed and the other when I was 18. I have been on Imuran or (Azathioprine) for at least ten years or more as well as Prednisone since my diagnosis. At one point I was off Prednisone for about a year but kept getting bronchitis and had to restart it and im still on it now (2 yrs later). 20mg daily. It hasnt been easy trying to get off this stuff or even lower it cause my body notices the drop and its only like 2 milligrams each time:( Have a portacath in my chest for IVIG treatments I get every 3 weeks. Mestinon 60mg every 3 hrs and still no remission for me but I really havent had any issues with the meds other than gaining weight with Prednisone.
-Tracey

like my hubby
 

Hi Ricardo, you are like my husband he knows more about mg then i do or i did - he is a proud husband and mg never cause him to think of me different he is always there to help me , now its my turn to give back to him he got RSD in his left arm and hand so i try to find info for us both and then came upon this site with fantasic feed back from compassonate people such as you and with the help of the computer i investigate it all now, nothing getting by me anymore,keep us all posted Ricardo .