Hi Nan

Same question from me I guess, I had Azathioprine increased from 75 to 125mg about six months ago along with regular blood tests, which were borderline. Lockdown seems to have stopped the tests, as much down to me as anyone else I guess - need to do something about that! Obviously interested to hear what others have to say.

Peter

Imuran (azathioprine) has been a standard treatment for MG for many years, and as such has many discussions in previous posts on this forum. some from pretty knowledeable people. I did a site search on this forum and found some good information from all the way back to 2009 and on. At the risk of repeating myself endlessly---

The way to search is to use the google site search syntax in your google search window
Type the next line in exacly and you will get the imuran search in the MG forum.

imuran site:dailystrength.org/group/myasthenia-gravis

The result of the search is the link below which you can click. You can also do it for azathioprine as some people do remember how to spell it ;-)

https://www.google.com/search?q=imuran+site%3Adailystrength.org%2Fgroup%2Fmyasthenia-gravis&rlz=1CAKSOU_enUS827&oq=imuran+site%3Adailystrength.org%2Fgroup%2Fmyasthenia-gravis&aqs=chrome..69i57.13880j0j7&sourceid=chrome&ie=UTF-8

Which brings me to another point -- this forum was very active with over 1000 people of which maybe 100 were active at anytime for many years. Then dailystrength made a dramatic change to the user interface. After the change, the forum here dwindled dramatically as not only was the interface buggy, but complex and sort of half completed when rolled out. So folks found other places to talk-- including several facebook and other forums and this one has been low activity compared to the past and some of the current facebook groups.

And that is why I suggest the site search as there is a great deal of useful information buried in the past posts.

Russ

Thanks so much, Russ. I just clicked on the larger link you gave. It's a gold mine of info.

My advice is believe you will get better and to exercise. Make sure to have an exercise regimen and try to increase exercise over time. Exercise when you are at your strongest. I am hoping one day you will be able to reduce your Imuran and eventually get off meds and MG will go away.

Best,
TJ

Thanks for the advice, TJ!
- Nan

Hey Nanosecond, I have been off of Imuran for a while now. Once my dosage was increased I had extremely bad reactions with my liver, among other things. My Neurololgist was only concerned with my anti bodies. Without blood testing increasing the dosage is risky in my opinion.

Hey TJ, I was under the impression from a previous post that you were on Cellcept, as am I.

Hi Russ, yes the buggy interface has kept from posting. The original post appears off to the side obscured by ads, unreadable. I use a PC so maybe that is why it appears this way.

blink

As a test I worked in the garden all day. It was hot, I worked until I was exhausted. My Neuro said I should recover:). Well yeah but it has taken me over a week. I had so much difficulty breathing I almost went to the hospital. I could barely walk. Eating wasn't possible. I wasn't able to begin recovering until I took a 20mg Prednisone every day for 5 days. Over 7 years into this MG it can still be scary if I make a mistake.

Thanks, blinkngone. I will be sure to have my liver enzymes bloodwork done when ordered. My neurologist is vigilant about possible liver problems; however, with all the Covid-19 precautions, I am tending to let the bloodwork he orders slide a bit.

The garden in hot weather is my downfall. <3
- Nan

Blink, yes I am on cellcept. Been posting here for ten years now. Lots of sharing here over that time.

Best,
TJ