Scared

[Sarita75]

I’ve been diagnosed with AIM and PBC for about 2 years now and it’s stage 3 systematic and now it’s relapsed after about a year of no yellow eyes or itchiness now I can’t stop scratching at night mostly and the tiredness is taking a toll on me affecting my daily life and now I’m scared cause it’s displaying more symptoms that could handle been on 1000mg ursodiol and 125mg of imuran and I can’t stop going to the bathroom and my stool pasty and pale, should I be worried?

[Michiganpbc]

I would call you liver doctor let them know what is going on and they can give you something for the itch.

[Cyndylouwho]

New here, so don't have too much experience with any of this. Still, have to go through initial steps. I do agree though about calling your liver specialist. I might not know much, but you will be in my thoughts and prayers. Someone just sent me this... and I'd like to share it here. Might help...

Your daily truth from Brave Living... Dear Striving Soul, There is this time, this space between not anymore and not there yet...that middle space...that space where it’s hard to keep going, it’s hard to keep perspective and it’s hard to keep a smile on our faces. This is an important time and a confusing time. It’s a time that's hard to measure and hard to see when it will end. It’s a time that calls for more bravery than ever before. If you are weary, beautiful soul...know that it’s okay to stop and rest. It’s okay to take a break. It’s okay to cry when you are in between here and there. It’s okay that you want to quit. It’s just very important that you don’t quit. It’s okay to spend some time thinking about quitting and then spend even more time NOT quitting. But when you are weary it’s okay to have a break in the middle somewhere, and then remember where you are headed and get going toward where you belong.

[Sarita75 in reply to Cyndylouwho]

Thank you so much for those kind words

[shaza1966 in reply to Cyndylouwho]

That's so touching. Sounds like my life !!!

[gwillistexas in reply to Cyndylouwho]

Beautiful ❣️ that is good for everyone to hear❤️

[Cyndylouwho in reply to gwillistexas]

I am still at the start of all this. So I know nada. Still tesearching. Waiting on tests n then their results. So I am clinging to affirmations. Eating clean. Exercising. N trying to stay positive. Positive being a toughie. No one but y’all get the underling fear of dealing with something that is a sucker punch to your life. Thank you all for responding. 😀 and just being here. Don’t feel so alone.

[Hidden]

Do you mean aih? What stage were you at diagnosis and did you take prednisone at diagnosis and are you back taking it now?

Are you in the USA

[Sarita75 in reply to Hidden]

I’m in Miami Florida so yes in USA and I’m stage 3 since it’s systematic and AIH stands for autoimmune hepatitis and yes I was on prednisone and boy was I in hell I was swollen, hair started to grow everywhere pretty much that’s all the side effect that affect me

[Hidden in reply to Sarita75]

I’m in central Florida. Do you go to the Cleveland Clinic. I have aih with pbc being secondary. I’m diagnosed for a year. I go to the Mayo Clinic. My next apt is in April. I’m concerned for my next apt. How are your labs, hopefully you have a liver Dr treating you apposed to a GI

[Sarita75 in reply to Hidden]

Well I’m with gastrohealth at Baptist and my GI is awesome but he did recommend to try Cleveland clinic how’s that working or for you??? Well my alka was at 625 back in 10/5 and as of 1/15 it’s at 325 but what’s very high is my bilirubin it’s at 9

[Rebekahw74 in reply to Sarita75]

Hi! I live outside of Miami also! I was diagnosed with PBC a few months ago. Had a bad experience with the GI my dr referred me to. I may check out the Cleveland Clinic.

[gwillistexas in reply to Sarita75]

Is that your total bilirubin? If I’m not mistaken, the direct & total are most critical to watch.

[Sarita75 in reply to gwillistexas]

Yea that’s my total bilirubin But my GI started me on prednisone of 30mg a day and he promised to drop it as soon as my itchiness and jaundice starts disappearing along with some new blood work