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huntress 04-22-2013 04:55 PM

azathioprine
 
Hi just had a check up today. Dr says I'm not doing good at all. He havee wants me to go in and have 5 more plasma. The prednisone isn't working so he is putting me on azathioprine. Anyone else have any experiance with this drug? If so what was your outcome on this. Its Scary. I just want to know what others are going through.

Stellatum 04-22-2013 07:57 PM

I've been on azathioprine for about two years. It might be keeping me from getting worse--it's hard to say. The last three times he upped the dose (I'm up to 250 mg now) I had good spells that lasted a couple of months.

My doctor told me it would take at least three months to start working, but probably six months--or even up to a year.

Some people can't metabolize azathioprine, and it's toxic for those people. Most neuros will give you a blood test before you start taking it to make sure you're not a slow metabolizer.

I have not had any side effects from azathioprine at all.

Abby


Quote:

Originally Posted by huntress (Post 977459)
Hi just had a check up today. Dr says I'm not doing good at all. He havee wants me to go in and have 5 more plasma. The prednisone isn't working so he is putting me on azathioprine. Anyone else have any experiance with this drug? If so what was your outcome on this. Its Scary. I just want to know what others are going through.


huntress 04-22-2013 08:22 PM

Well that's good news and thanks for the warning. I was in the hospital for 4 weeks, they probably checked me for the slow motablism but I will call my doctor tomorrow before I begin taking it. Cuz toxic is usually death and I like living. Lol. Isn't aza the same thing as immutable? Read it nonlinear somewhere. Do you still have as many symptoms?

Thanks
Lisa

AnnieB3 04-22-2013 09:17 PM

Lisa, You absolutely have to have the blood test. It is called TPMT. Your doctor should be aware of this already.

I'm sorry you're doing so badly. Imuran/Azathioprine can take some time to kick in, so you might still need other treatments if you get worse.

Sometimes Imuran works and sometimes not. Some people do better with Cellcept. It all depends. Imuran has been around much longer and is the more "tried and true" immunosuppressant.

I hope it works for you! Take it easy. You don't need to get worse.

:hug:
Annie

huntress 04-23-2013 04:24 PM

Hi, thanks for telling me. Called my doctor or had my mom call because I have a hard time talking. They did the TPMT blood test and I was good. I am going to start my azapriothin in the morning. He started me on 100 Mg in the morning and 50 Mg at night. I just want to feel at least a little normal like all of us with myasthenia do. Having 5 more plasmas due to my weak swallowing and the doc saying your not good that prenisone may not be working the way they all thought it would. Thanks.

Lisa

QUOTE=AnnieB3;977515]Lisa, You absolutely have to have the blood test. It is called TPMT. Your doctor should be aware of this already.

I'm sorry you're doing so badly. Imuran/Azathioprine can take some time to kick in, so you might still need other treatments if you get worse.

Sometimes Imuran works and sometimes not. Some people do better with Cellcept. It all depends. Imuran has been around much longer and is the more "tried and true" immunosuppressant.

I hope it works for you! Take it easy. You don't need to get worse.

:hug:
Annie[/QUOTE]

Miranda 04-25-2013 10:50 PM

Quote:

Originally Posted by huntress (Post 977733)
Hi, thanks for telling me. Called my doctor or had my mom call because I have a hard time talking. They did the TPMT blood test and I was good. I am going to start my azapriothin in the morning. He started me on 100 Mg in the morning and 50 Mg at night. I just want to feel at least a little normal like all of us with myasthenia do. Having 5 more plasmas due to my weak swallowing and the doc saying your not good that prenisone may not be working the way they all thought it would. Thanks.

Lisa

QUOTE=AnnieB3;977515]Lisa, You absolutely have to have the blood test. It is called TPMT. Your doctor should be aware of this already.

I'm sorry you're doing so badly. Imuran/Azathioprine can take some time to kick in, so you might still need other treatments if you get worse.

Sometimes Imuran works and sometimes not. Some people do better with Cellcept. It all depends. Imuran has been around much longer and is the more "tried and true" immunosuppressant.

I hope it works for you! Take it easy. You don't need to get worse.

:hug:
Annie

[/QUOTE]
I was on it for a long time before I had problems with it I also can't tolerate prednisone to many side effects to list but needless to say I am not taking anything that requires 10 other drugs to combat the Side effects I hope u do well with this have u tried ivig. I have had great results with it

huntress 04-28-2013 04:14 PM

Was supposed to start azathioprin last week I haven't yet. Too scared to but I know I will have to. The ivig didn't work on me. I'm getting a catheter surgically put in tomorrow morning in my neck to do moe plasmapheresis. Had 5 a few weeks ago but doctor says I'm still weak. Today for the first time I fell into the house my leg gave out. It hasnt done that for a long time. Wonder if its the prednisone. Maybe its causes mestinon not to work so much. I take 8 hour pyridostigmine 60 Mg. Also I'm under a lot of stress. My dads in which I live with does nothing to help me. He thinks bringing me to the doctors is enough. He even left my mother when I was fighting for my life when I died. Its a long story. Too long.
[/B][/B]I was on it for a long time before I had problems with it I also can'tolerate prednisone to many side effects to list but needless to say I am not taking anything that requires 10 other drugs to combat the Side effects I hope u do well with this have u tried ivig. I have had great results with it[/QUOTE]

4-eyes 04-28-2013 04:29 PM

Hi,

Are you saying you are taking 60 mg of mestinon every 8 hours? If so, that is likely not enough. I think most dose every 3-4 hours. I suggest you run that by your doctor.

MG is just tough. I think it's very important to try everything you can to get improvements, but sometimes meds and procedures just don't work very well, no matter what. You sound fairly unstable right now, so if you can work closely with your doctor in the next weeks, perhaps you can get some relief. Does your doctor email with his/her patients?

Keep fighting! You never know when a treatment will work or when your body will decide to improve spontaneously. Always be open to new ideas!

huntress 04-28-2013 05:27 PM

Hi, I was taking mestinon every 3-4 hours. The doctors told me that was too much so they supposenly gave me 8 hour pills. But I didn't think they had 8 hour pyridostigmine. I'm on 60 Mg prednisone daily. A iron pill because being in the hospital a month can do that to you.hospital/woo much blood taken Aniema. Plasma did help though cuz mine is vary Bulbar/swallowing/talking. I can eat and swallow though my speech is on and off still. Swallowing was weak when I had my xray/swallowing test but its going down right. Again like we all know some days are better than others. Falling is vary Scary because I have stairs and then another stair into my home. always that last step into the home. But its like ahhh I haven't done that sińce I wasn't on mestinon. Before I was diagnosed. I have been under a lot of stress so that could be part of my problem.

Thanks
Lisa
Quote:

Originally Posted by 4-eyes (Post 978998)
Hi,

Are you saying you are taking 60 mg of mestinon every 8 hours? If so, that is likely not enough. I think most dose every 3-4 hours. I suggest you run that by your doctor.

MG is just tough. I think it's very important to try everything you can to get improvements, but sometimes meds and procedures just don't work very well, no matter what. You sound fairly unstable right now, so if you can work closely with your doctor in the next weeks, perhaps you can get some relief. Does your doctor email with his/her patients?

Keep fighting! You never know when a treatment will work or when your body will decide to improve spontaneously. Always be open to new ideas!


4-eyes 04-28-2013 06:17 PM

To the best of my knowledge, there is no such thing as 8 hour mestinon. There is Timespan, which is 180 mgs, which some use at night.

Sorry you're having such a tough time. Maybe a chat with your doctor or even pharmacist (about the mestinon) would help.

huntress 04-29-2013 08:35 PM

Quote:

Originally Posted by 4-eyes (Post 979024)
To the best of my knowledge, there is no such thing as 8 hour mestinon. There is Timespan, which is 180 mgs, which some use at night.

Sorry you're having such a tough time. Maybe a chat with your doctor or even pharmacist (about the mestinon) would help.

Yes def. Going to talk to my pharmacists about that. Had my 6th plasmapheresis today along with installation of my temp catheter. Lol...going to start azthioprin tomorrow. Still afraid of them but I need them and my doctor is one of the top in mass. He specializes in Mg. Dr Russell if anyone knows him.

southblues 04-30-2013 07:57 AM

I don't think I could make it if I went 8 hours without my mestinon. After 4 hours I start to go way down hill.

kt 04-30-2013 06:56 PM

Hang in there.

Azathioprine does work because I've been on it for about 2 years now @ 150 Mg a day.
Recently I did not rly listen to my doctors and stopped taking azathioprine for a while. I am now back to a very weak state( a little above crisis).

So now, like you I'm back on azathioprine building it back up in my system. This started Feb 2013. I expect to see results within 4 months. Although from the past, it took 6 months to kick into my system. I am also on prednisone.

I wish for you the best results asap!

huntress 05-10-2013 08:54 AM

I started azathioprin yesterday. My left foot is swollen. Has anyone else had swollen sometimes tingly feet starting aza?

4-eyes 05-10-2013 09:07 AM

I would suspect the foot issue is plasmapharesis related. You might want to run that by your doc's office.

huntress 05-10-2013 01:05 PM

Quote:

Originally Posted by 4-eyes (Post 982339)
I would suspect the foot issue is plasmapharesis related. You might want to run that by your doc's office.

Really? I have never had that before with plasmapheresis. I ate some cheese sticks yesterday maybe its sodium retention from it. With being on prednisone too though I never had the swelling issue till I started taking aza. I see my doc in a week. Praying its nothing to worry about.

Lisa

4-eyes 05-10-2013 01:42 PM

The reason I say plasmapharesis is just the fact that your body fluids have been mechanically and chemically altered, which could cause some edema. In the worst case scenario, you could have a little clot somewhere in that leg. The fact that it's unilateral also is unusual, thus making it less likely to be a med reaction.

Keep an eye on it, and if it feels warm or looks red or bluish, or becomes painful to the touch, get seen ASAP.

huntress 05-10-2013 02:24 PM

Quote:

Originally Posted by 4-eyes (Post 982430)
The reason I say plasmapharesis is just the fact that your body fluids have been mechanically and chemically altered, which could cause some edema. In the worst case scenario, you could have a little clot somewhere in that leg. The fact that it's unilateral also is unusual, thus making it less likely to be a med reaction.

Keep an eye on it, and if it feels warm or looks red or bluish, or becomes painful to the touch, get seen ASAP.

Never knew that about the plasmapheresis. Good thing to know thank you. Its just swollen my legs are fine which is a good sign. See we learn something new every day. Strange though that azathioprin would cause the swelling one would think. Another thing I noticed my hunger has gone down and food is blah...Lol which with prednisone making you hungry its a good thing. Lol

huntress 05-10-2013 10:15 PM

ROkay so I took azathioprin my 50 Mg. I take 150mg a day 2 morning 1 evening. My foot was going down the swelling now after that evening 50mg it has swelled back again. Def a side effect to tell y'all about. Telling my doc tomorrow.

Lisa


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