Hello all.

I was wondering what the idea of drinking alcohol and Imruan was.

I know your all going to say that its a bad idea, because honestly it is. Yet I did it last night, and usually (i dont drink that much just genes) i can drink quite alot without being affected. Yet last night, i blacked out, I just started my 2nd week of 200mg of Imuran. Im not going to drink from now on, it seems like a death sentence. Hope your all doing well.


-Still have bronchitis, and sinusitis, nothing is working to treat it. I think ive become immune to the last reasonable antibiotic. URG.


In a bad mood today about it all. Hard to explain to everyone why i cant/dont want to drink.

Tyson, I think you answered your own question! The passing out part is very concerning. How much did you drink? Has anyone checked your blood sugar lately (are you still on Pred?)? If you drank and didn't eat, your blood sugar can plummet after drinking!

How about you tell them that alcohol makes your already weak muscles even weaker and you would rather be alert and strong and get an A in classes than an F in life? I know, that's even too long and complicated. How about "Alcohol makes me sick."

It's no one's damn business anyway. Your friends will understand. Those who are not your friends don't need to know except that you simply don't drink. A lot of people don't drink. What scares me is if some idiot thinks they are being funny and laces your drink with alcohol or anything else, they could put you into an MG crisis or worse.

Did your doctor test you for the enzyme deficiency BEFORE you started Imuran? Toxicity of the liver is no laughing matter. And alcohol added to that mix can be deadly. The liver is what "metabolizes" alcohol. That's why many alcoholics have cirrhosis of the liver.

http://www.brighthub.com/science/med...les/53768.aspx

I hope you will try to find a doctor who looks at alternative medicine too, like holistic medicine. It's pretty serious for someone in your position (being immunosuppressed) to not be responding to antibiotics. In a college environment, you are exposed to more germs. I can't remember who mentioned this but it was a good idea . . . always check yourself out for mono if you get swollen glands or a fever or are really tired.

I hope you can find a way to feel better. As someone who has had two college degrees and is older than you, what people think of you in college is of no consequence after college, unless they are your friends and, in that case, they will support you no matter what. Hang in there.

Annie

Annie- Thanks for your response. I did drink quite a bit. Im on 60mg a day of prednisone now...long term. Yet Its not doing that much. She said next week if i didnt feel much better she would order IVIG. I think im going to take her up on this. I feel as though i should have the ability to be strong enough to get to class. I owe that to myself. Im drooling so much lately and that is annoying.

Ill hopefully be getting the infusions by next week. or Next monday. I wanna feel normal.

Thanks for your support.

Honey, you don't HAVE to explain to anyone why you aren't drinking; if they have a problem with it, then tough on them. If you tell them that you don't have a problem with THEM drinking, they're usually OK with it. And really, if they are trying to get you to "join in" with them, isn't it possible that in the back of their mind they know that it probably isn't the smartest thing to be doing? That maybe they think that the more people who are doing it, the more "acceptable" their doing it is? That's an issue that THEY are going to have to work out on their own.....

As to your statement, "I feel as though i should have the ability to be strong enough to get to class. I owe that to myself", I have to take issue with what you are saying. You have a disease that causes your muscles to not get enough energy. Whether or not you SHOULD have strength, the cold hard fact is that you DON'T have that strength. It's not something that you can change by wanting it to be so, so quit beating yourself up over it. What you "owe" yourself is to understand that you have a limited amount of energy available and you have to maximize what you are able to do with that finite amount of energy.

I think I suggested before, you NEED to look into the Disability Services that are available on campus. If there is some way that you can get a "ride" between your dorm and your classrooms, then take advantage of that. Every extra step that you take is less energy for other things. It's basic physics, and the laws of physics CANNOT BE CHANGED, no matter how much we may wish otherwise!

I explained it to my husband in terms of an electric car/cell phone/laptop - the battery will only hold so much energy, and when that energy is used up the battery has to be recharged. If you do anything that requires more energy (in the case of a car, things like going up steep hills, running the AC, playing the radio, etc.), the charge lasts significantly less time before the battery has to be recharged. And once the battery is drained, the device WILL NOT WORK until the battery is recharged. Again, simple physics.

Think about what you do when you know that your cell phone or your laptop is low on batteries, and apply similar thinking to your body. If anyone asks why you aren't doing something, I'd be willing to bet if you put it in terms that they can understand, they will be much more able to accommodate you not just then, but also in the future. Just tell them, "My muscles' batteries are running low, and I need to recharge", and they should "get" it!

Teresa- Thanks for all your help. i dont even have the engery to type a thank you letter in response to your post.. sorry. I am however going to post another post to vent.

Thanks again for all who contributed.

Tyson,if you don't mind me to ask: why you new neuro switched you to imuran? As I know,it takes longer to start working,but she probably had her reason.Is she in the same group as Dr Drachman is ( heard about him a lot)?.
Best regards,
Marina.

Marina, Yep, she is in the same area as Dr. Drachman. At first I was going to be seeing him, then I switched to Dr. Corse because of her age (younger, etc)

She switched me because she thought it should be working much better than it was. I was maybe at 60% and i had been on the cellcept for about 9 months where it should have been working.


Hope your all doing well.

Thank you,Tyson,I hope it will work for you better.M