[crazykiz]

If anyone out there has any of these I would like to know what you take and how you deal with it.

[wannasavebig]

Hi, I have autoimmune hepatitis. I was diagnosed over 5 years ago so my meds have changed thru the years but most generally you start out on a pretty high dose of prednisone to get it under control then add azathoprine and hopefully one day greatly reduce or even get off the prednisone. I am by no means an expert or intend to imply I can offer any actual medical advice but am willing to answer any questions you have. It can be very overwhelming at first but it DOES get better and if you are interested there is a great support group on line where you can gets tons of others to compare stories.
Hope you're feeling ok, Michelle

[crazykiz]

Originally Posted by wannasavebig

Hi, I have autoimmune hepatitis. I was diagnosed over 5 years ago so my meds have changed thru the years but most generally you start out on a pretty high dose of prednisone to get it under control then add azathoprine and hopefully one day greatly reduce or even get off the prednisone. I am by no means an expert or intend to imply I can offer any actual medical advice but am willing to answer any questions you have. It can be very overwhelming at first but it DOES get better and if you are interested there is a great support group on line where you can gets tons of others to compare stories.
Hope you're feeling ok, Michelle

Thank you for responding to my post. I was on 10mg of prednisone back in I think august it was a miracle drug I was in so much pain couldn't hardly walk was off work for a month. They have now takin me off the prednisone and I take budesonide which is generic for something can't remember, I have not felt that good since they took me off the prednisone. The pain hasn't really came back but I'm very tired all the time & no energy. I'm starting to have the dizzy/nausea spells again. Has your's flared up in the past 5 years? I really don't know much about what I have so I would love the website for the support group. Thank you Teresa .

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[nikifarley]

I dont have lupus, I have MS, a diff autoimmune disease, my sil has lupus. She is tough lady and she says it hurts. Just wanted to give my ((hugs)) & prayers. I personally went to er tonight bc my pain became intolarable. Praying for a cure

[crazykiz]

Originally Posted by nikifarley

I dont have lupus, I have MS, a diff autoimmune disease, my sil has lupus. She is tough lady and she says it hurts. Just wanted to give my ((hugs)) & prayers. I personally went to er tonight bc my pain became intolarable. Praying for a cure

Oh I'm sorry to hear that do they not have you on any meds for your pain? Prayers to you also hope they did something for your pain. We can't just take a tylenol and the pain go away which sucks. With autoimmune hepatitis I can't take them because of my liver. Hope your feeling better.

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[nikifarley]

I wish. There isnt pain meds that work on nerve pain. But I started steriods, so in a few days Im hoping for some relief.

[Chloey]

Originally Posted by nikifarley

I dont have lupus, I have MS, a diff autoimmune disease, my sil has lupus. She is tough lady and she says it hurts. Just wanted to give my ((hugs)) & prayers. I personally went to er tonight bc my pain became intolarable. Praying for a cure

Not trying to steal the thread, but when were you diagnosed with MS?... are you just starting treatments?

My DH has MS and I have been through the rollercoaster with him, willing to lend a shoulder if you want it! Feel free to PM me!

[crazykiz]

Originally Posted by Chloey

Not trying to steal the thread, but when were you diagnosed with MS?... are you just starting treatments?

My DH has MS and I have been through the rollercoaster with him, willing to lend a shoulder if you want it! Feel free to PM me!

Your not stealing the thread anyone can post. There could be people out there that could be of some help for you. Prayers to you and DH.

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[crazykiz]

Originally Posted by crazykiz

Thank you for responding to my post. I was on 10mg of prednisone back in I think august it was a miracle drug I was in so much pain couldn't hardly walk was off work for a month. They have now takin me off the prednisone and I take budesonide which is generic for something can't remember, I have not felt that good since they took me off the prednisone. The pain hasn't really came back but I'm very tired all the time & no energy. I'm starting to have the dizzy/nausea spells again. Has your's flared up in the past 5 years? I really don't know much about what I have so I would love the website for the support group. Thank you Teresa .

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I forgot to ask you if your toes or fingers have locked up on you kinda like a charlie horse? I don't know if this is the autoimmune hepatitis or the RA/lupus part.

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[crazykiz]

Originally Posted by crazykiz

wannasavebig
I forgot to ask you if your toes or fingers have locked up on you kinda like a charlie horse? I don't know if this is the autoimmune hepatitis or the RA/lupus part.

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[nikifarley]

I was diagnosed May 2010. Ive been on inferon treatment since. Spent last night in er though. Just couldnt tell if it was MS or stroke this time :/

I have a wonderful hubby but army life keeps me doing it alone a lot. My parents try but they dont really get it. I had them read the spoon theory. I think it helped a little.

I pray daily for cure to autoimmune diseases like this, like lupus. I know in the end it makes us stronger but sometimes the road feels riddled with sharp rocks.

Woke up with killer headache and begging my 11 yr old to help move my arms and hands. They were 'stuck' in place. I think I may just skip the skating birthday party today...

[wannasavebig]

Hi sorry I didn't add the address to that support group it's on the left hand side you will see support forum click that to get to where everyone's 'stories" are it's most people with AIH but you guys with lupus or MS are welcome to check it out to alot of autoimmune diseases have alot of things in common. My fingers and toes have never locked in place I would guess thats more the RA/lupus part but it's hard to say because AIH causes joint swelling also. I have had a couple of flares thru the years usually when I was they tried to lower my prednisone to fast I started at 40mg and took 5 years to wean off of it.
Well anything else you can think of just ask by the way what state are you in?

[wannasavebig]

post 14

[wannasavebig]

ok sorry I could not figure out why I typed a reply several times then it wouldn't go then I realized I had a link in it and hadn't posted enough to be allowed one so I think it will go this time I just deleted it from the post above so if it doesnt make sense thats why anyway that support group address is AIH Support Group

[deneisetorres]

Originally Posted by nikifarley

I had them read the spoon theory. I think it helped a little.

Thank you for this information.
I had never heard of the spoon theory before, so I googled it & found the blog. It is a wonderful explanation of how life works with a chronic illness. I have RA, but I was diagnosed shortly before I lost my job & my health insurance so I am not on any medication for it. Thankfully it is mild to moderate at this point & hopefully I can get back to work & get insurance before it gets much worse.

My sister has MS and after a 15 year battle with it, her meds have essentially stopped working. She is losing a little more from every "spoon" each day. I just pray that someone finds a cure or a new treatment for her soon.

[crazykiz]

Originally Posted by wannasavebig

Hi sorry I didn't add the address to that support group it's on the left hand side you will see support forum click that to get to where everyone's 'stories" are it's most people with AIH but you guys with lupus or MS are welcome to check it out to alot of autoimmune diseases have alot of things in common. My fingers and toes have never locked in place I would guess thats more the RA/lupus part but it's hard to say because AIH causes joint swelling also. I have had a couple of flares thru the years usually when I was they tried to lower my prednisone to fast I started at 40mg and took 5 years to wean off of it.
Well anything else you can think of just ask by the way what state are you in?

I'm in Ohio.

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[wannasavebig]

I'm totally shocked I'm in Ohio too!

[crazykiz]

Originally Posted by wannasavebig

I'm totally shocked I'm in Ohio too!

Omg I'm in Middletown. Where are you?

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[wannasavebig]

ya got me there I've never even heard of Middletown so probably not close to me I'm in Russells Point it's very small closest big city would be Columbus about an hour away. I hope you have better luck finding a Dr. in your area than I have in mine.

[crazykiz]

Originally Posted by wannasavebig

ya got me there I've never even heard of Middletown so probably not close to me I'm in Russells Point it's very small closest big city would be Columbus about an hour away. I hope you have better luck finding a Dr. in your area than I have in mine.

I'm located about 30 miles north of cincinnati Ohio. My doctors have been pretty good here.

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[ingramdeb]

I have RA im on a med to slow the progression but nothing will stop it. I find myself droping things i have troubles with jars ty my DH for opening those for me I wear braces at night on both hands. I take pain meds as needed (usualy when i use my hands alot they tend to hurt more also the cold).

[crazykiz]

Originally Posted by ingramdeb

I have RA im on a med to slow the progression but nothing will stop it. I find myself droping things i have troubles with jars ty my DH for opening those for me I wear braces at night on both hands. I take pain meds as needed (usualy when i use my hands alot they tend to hurt more also the cold).

I'm sorry to here this but I can relate. My mother was very I'll from RA. I can barley remember her walking. She had to have around the clock help. She was bedfast for most of her life. Her hands was drawn so much she couldn't feed herself. I took care of her til it got to much for me as a child in school. We had to put her in a nursing home. She was in so much pain all her life. She past away Aug 1985 at the age 41. I'm hoping I don't get as bad as she did. If so I hope my children would be there for me like I was for my mom, but kids now a days they don't think about those things.

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[crazykiz]

Originally Posted by crazykiz

I'm sorry to here this but I can relate. My mother was very I'll from RA. I can barley remember her walking. She had to have around the clock help. She was bedfast for most of her life. Her hands was drawn so much she couldn't feed herself. I took care of her til it got to much for me as a child in school. We had to put her in a nursing home. She was in so much pain all her life. She past away Aug 1985 at the age 41. I'm hoping I don't get as bad as she did. If so I hope my children would be there for me like I was for my mom, but kids now a days they don't think about those things.

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I'm on meds to to slow the process to. Hydrooxychloroquine 200mg.

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[wannasavebig]

I'm sorry to hear about anybody having to be in pain from these diseases ( everyone on here ) It's a shame they haven't made more progress than they have with the treatments and medications than what they have. I am pretty lucky to be stable at the moment so I don't wanna complain but it would be nice to have more options than just massive amounts of steriods when I have a flare.

[crazykiz]

Originally Posted by wannasavebig

I'm sorry to hear about anybody having to be in pain from these diseases ( everyone on here ) It's a shame they haven't made more progress than they have with the treatments and medications than what they have. I am pretty lucky to be stable at the moment so I don't wanna complain but it would be nice to have more options than just massive amounts of steriods when I have a flare.

I know I hated begin on the prednisone it made me gain weight which is not good for my bones or joints. wannasavebig I live 30 miles north of Cincinnati Ohio.

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