Hello all,

1. My wife was recently diagnosed with level IIb Myasthenia Gravis. She is on prednisone for the first month and then steroid sparing immunosuppressant drugs like azapriothine will be introduced. I have read many claims that long term use of immunosuppressants like azathioprine have serious long term effects like skin cancer, lymnphomas and other malignancies i.e. increased risk thereof. My question is how real are these risks i.e. I have seen many incidences of organ transplant patients on azathioprine connected to skin cancers but have seen no real accounts of people with MG developing these side-effects. Does anyone here know of people who have experienced these side-effects when taking azathioprine long term. What dose and for how long mus the dose be taken to cause these side-effects.

2. Also I see many web sites recommending alternate day prednisone as a treatment. Can alternate day prednisone be administered long term without side effects or will the side-effects associated with prednisone also be observed with alternate day doses. As you can see I would like to chose the best treatment for my wife whilst also trying to avoid the nasty side-effects.

Any advice or relaying of experiences will be much appreciated...

Hi Ricardo, First find an EXCELLENT neurologist -one that lisitens to you and cares whats going on, im linda and i have general mg eyes-and body- 37 yrs and on azatheraprine 2 yrs along with mestinon- and everybody intake of whats they need of medication is different some work on people and some dont but before that i was on another stronger imminosuppresent called cyclosporine ( sandimuune) i took that for 10 yrs and had to change it did cause kidney problems but the thing is got to outway the benifits of what aza or any immunosuppressant can do for your wife and its great to read info and make a wise descison on what you chose to do and it is scarey reading all whats in the info on any medications, i can walk better- breath better just overall feel like a human, it scarey anytime medications are involved i myself did not want to take anything but i did on my doctors advice and happy i did. but everyone is different you and your wife and doctor will make the right choice. EDUCATE EDUCATE. Linda

Hi, Ricardo. I am about to go on azathiopine, too. I don't know about long-term effects, but I know two important things:

1) Your doctor should give your wife a blood test called the TPMT test before she starts the drug. It is to make sure she has the enzyme needed to metabolize it. http://www.medscape.com/viewarticle/586270

2) Your wife will need blood tests regularly while taking the drug--often at first, and then less often. These are to make sure it's not harming her liver or blood count.

Abby

thank you abby i never knew this myself tpmt test, going to ask my doc why i did not have that test , and i wonder if it was because i got diagnosed with kidney desease from cyclosporine 10 yrs of it and kidney doc wanted me off of cyclo asap so called my neurologist and asked if i could be taken off of cyclosporine asap and he then put me on it was cheap for me since i have to pay for it azatherprine that same day... hmm and i do get blood test every six months from nuero and kidney doc and family doc, wow and i say educate yourself looks like i need to..
very imformative info on this site bravo!!

Thanks so much Linda and Abby!

I will be sure to check with our neuro about the TPMT test. My wife also had eczema as a child and her skin thinned out quite a lot due to steriods. Currently her eczema only flares up occasionally. I am also wondering if one is at greater risk for lymphomas and skin cancer if one already has fairly thin skin. The problem with our neuro is that she runs a state clinic and so does not always have the time to answer all one's questions during the consultation. She just tends to prescribe medication without allowing us to be involved with the choice...So if anyone has a link or information or a clinical trial of people who have been on azatheraprine for 15 years or longer please let me know. Also I wonder if it is standard practice to try and taper off the azatheraprine after a few months to see if the patients needs it at all or needs very little...

At least it is very encouraging to be able to talk to people who are in the same position as we are . Thanks alot!

I wonder how things developed for you? I've only just seen and joined the forum but I do MG (a little over 3 years). This link might help - not able to post a link I see in which case Google 'myasthenia gravis Azathioprine long term' and that provides a paper with a very encouraging trial result. No doubt search hard enough and there'll be one to cause concern but one does for me.

Peter

Hi Peter,

things are much better now compared with my wife's flare up at the start of this year. At the moment we are trying to taper off her prednisone, which is now at 25mg per day and it seems like the azathioprine has not kicked in yet and its been 8 months already since she's been on aza. How is your MG going?

regards
Ricardo