My liver counts continued to be high for a couple of years, tried changing medications, gallbladder taken out. It has been diagnosed as a fatty liver then my ANAs and CPR (?) went up over 130.
They have decided I have lupus, I have not started any medications yet.
Kind of learning everything at this point and was wondering what to expect.
Does it get worse or better with medications?
Hello J
Everyone is different and it can take a while to find the right combination of meds, exercise, diet and relaxing techniques. When I was first diagnosed I took 2 meds and did fine for many years. It will help if you start keeping a journal now of things that make you feel worst or better. Write down things you would like to ask the doctor.
How long have you had it and what meds did they put you on?
Im a single person and find the thought of not being able to work or ever having any energy again overwhelming
3 months ago I was diagnosed with Autoimmune hepatitis
I wasn’t given any medication yet just waiting to see if my liver enzymes would normalize they have not so I see the doc on Monday for a treatment plan
sounds like you are playing the "wait and see" game also.
Let me know what they say
Everyone's lupus is different, everyone responds differently to medications, the medications help some people, and not others. there's no rhyme or reason to it. The best thing you can do is keep a journal, and talk to your doctor and don't be afraid to ask questions, you have to advocate for yourself.
I've had this autoimmune hepatitis for a very long time, as far as I know there is no real treatment plan
hope you'll update us after you see the doctor.
kswhite said:
3 months ago I was diagnosed with Autoimmune hepatitis
I wasn't given any medication yet just waiting to see if my liver enzymes would normalize they have not so I see the doc on Monday for a treatment plan
I did get the journal and have begun writing how I feel each day so when I see the doctor I can discuss options.
I'm trying to find out as much info as needed.
Right now I've caught myself calling in sick to work more often. I'm praying whatever medication I'm put on will help with the energy levels.
The doctor is saying plaquenil for now but I missed my appointments due to getting the flu then bronchitis after the holidays. Probably because I pushed myself too much.
It makes me wonder how many people are able to continue as normal a life as possible
Having a "normal' life is now with Lupus. The biggest struggle for me was to mourn the person I was before and accept the new me. I still go through those motions when others can go do something I can't but you will just find ways that you can include yourself so you don't isolate. My biggest problem is not reaching out to others to go do things I can do. I will feel sorry for myself and say "they don't invite" me because I'm physically challenged and fatigue plays a huge role. You will learn to pace yourself and pick and choose what you want to do and what you will do later or just simply say no. That was my issue. I'd get sick because I wanted to be my "old" self. I was always on the go, being there for everyone else, volunteering, perfectionist when it came to a clean house and very organized. Now, I just need to look at the dust one day and tell myself I will eventually get to it when I feel stronger to do it. A big key is to find support with the people who understand your illness and accept that things can change from day to day according to how you feel. Medication isn't the fix it. It's there to help get the illness under some sort of control. I've been told to just get off all the meds because of the side affects but what people don't understand is that without medication, I'd be a bigger mess. You and your Dr will find the right ones to try and like others said, everyone is different and the meds that work for one may not work for the other. Sorry this is so long but I remember when I was first diagnosed. I didn't think anyone "got it" and this is a place where everyone GETS what you feel and the emotions we face versus someone who is there to support you and says they understand. There is a difference. Best of Luck in all your endeavors.
wow - you hit it on the nail.
Poker Face said:
Having a "normal' life is now with Lupus. The biggest struggle for me was to mourn the person I was before and accept the new me. I still go through those motions when others can go do something I can't but you will just find ways that you can include yourself so you don't isolate. My biggest problem is not reaching out to others to go do things I can do. I will feel sorry for myself and say "they don't invite" me because I'm physically challenged and fatigue plays a huge role. You will learn to pace yourself and pick and choose what you want to do and what you will do later or just simply say no. That was my issue. I'd get sick because I wanted to be my "old" self. I was always on the go, being there for everyone else, volunteering, perfectionist when it came to a clean house and very organized. Now, I just need to look at the dust one day and tell myself I will eventually get to it when I feel stronger to do it. A big key is to find support with the people who understand your illness and accept that things can change from day to day according to how you feel. Medication isn't the fix it. It's there to help get the illness under some sort of control. I've been told to just get off all the meds because of the side affects but what people don't understand is that without medication, I'd be a bigger mess. You and your Dr will find the right ones to try and like others said, everyone is different and the meds that work for one may not work for the other. Sorry this is so long but I remember when I was first diagnosed. I didn't think anyone "got it" and this is a place where everyone GETS what you feel and the emotions we face versus someone who is there to support you and says they understand. There is a difference. Best of Luck in all your endeavors.
definitely keep a journal, whatever you do! it will help you see patterns of what makes things better or worse, including certain foods and certainly medications.
purplebutterfly said:
Hello J
Everyone is different and it can take a while to find the right combination of meds, exercise, diet and relaxing techniques. When I was first diagnosed I took 2 meds and did fine for many years. It will help if you start keeping a journal now of things that make you feel worst or better. Write down things you would like to ask the doctor.
from the beginning, I have looked for help beyond the medications.
all the medications can do is "manage" the disease.
which is not to be laughed at- lupus used to be a death sentence.
but being on some of these powerful drugs for a long time can cause real problems.
so, i look to alternative medicine for other options.
I've tried sooooo many kinds of alternative medicine, and a lot of it helped, but I had to keep going to appointments and paying others to keep me well, with chelation therapy or acupuncture.
In the end, I've found that diet change has been the most effective and least expensive way to help me stay off the immune suppressants. I completely avoid gluten, dairy, artificial sweeteners (used to be addicted to diet soda), and I get plenty of vegetables and filtered water, some fruit, nuts, beans. I've been at this so long I'm very tuned in to my body and I can tell pretty quickly now if i've eaten something or done something that aggravated my system.
make no mistake- drugs have saved my life 3 times! I do use them when I'm in a state of emergency. then i get other help, go back to my good eating habits and wean off the drugs (yes i've kept falling off the wagon until this last time. no immune suppressants since 2008!).
welcome and wishing you all the best
I hadn’t thought about writing down food but will begin that.
How have the drugs saved you three times?
I too love my soda. 
What alternative things have helped?
This may be one of the worst diagnosis ever. A person has to work and live. At least with other diseases medication works to get you back to that point
Very helpful info!
I agree.
I’m open to any and all suggestions.
I’m glad I found this site because you do feel like you’re trying to explain to people what’s going on and you get that look like if you would just do …,
It’s hard to hear
Keep filling me up with things that are working for everyone.
I feel that we need both at times. Really research natural things for lupus i cant tell u how sick i was since i was 4! Its helped. People praying for you really helps too… i did well with cellcept and plaqiluinil. Also i couldnt live without curcumin… that will also help with the fatty liver
Since 4?!!!
Wow
Did your Doctor tell you about curumin or is it a vitamin you just take?
I will discuss it at my next Dr. visit.
This all new to me - Looks like I will start plaquenil in a couple of weeks :(