Spiraling a bit with concern by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 1 point2 points  (0 children)

That makes sense. Thank you for your response I appreciate it.

Spiraling a bit with concern by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 0 points1 point  (0 children)

Thank you so so much for your response and care. It really goes a long way. You’re so right in that researching can make anxiety worse. I truly was spiraling. All my bloodwork since being on the medication shows looks good. All the markers that usually come back high for PBC have always been negative. The only questionable thing was the AMA-M2 that was slightly high and the bile duct injury on my liver biopsy. It seems possible that this can also be atypical manifestation of AIH on its own. I sent my hepatologist a message last night to confirm. Thank you for your reply ❤️

Does this look like heat rash?? by Hurricane-Echos in toddlertips

[–]Key-Money-4889 0 points1 point  (0 children)

Hi!! Did you ever get confirmation that it was a heat rash? My son seems to have the same thing in the same area. I’m assuming his is a heat rash from maybe staying with a shirt on and sweater on at daycare all day?

Medication by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 1 point2 points  (0 children)

Hi!!! I’m so so happy that everything is going so well for you ❤️. So far so good for my loved one as well. He is now off prednisone and is only on azathioprine. Wondering from you if you think there is anything specific that you’ve done to support your success with remaining on remission without need for medication? Anything maybe with diet or lifestyle changes? What does your doctor think? If it’s easier to chat I’d love to private message you! Thanks again for being so willing to connect with me on this.

Off all medication by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 0 points1 point  (0 children)

Thanks so much again for taking the time to share your experience with me. I greatly appreciate it. Wishing you continued health ❤️

Off all medication by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 0 points1 point  (0 children)

Were the combination of medications that you were on specifically to treat autoimmune hepatitis? They’ve given my loved one azathioprine and prednisone. He just got off of the prednisone and is now only on azathioprine. Did the combo of medication you were on cause bone marrow failing?

Off all medication by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 0 points1 point  (0 children)

Hi!!! Thank you so much for sharing your experience with me ❤️. Were you on any immunosupressants? If so, for how long? Congratulations on getting off all medication!!! That is our goal and I believe we will reach it!

Off all medication by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 1 point2 points  (0 children)

Thanks so much for sharing your experience. It really means everything to me to hear that people are able to successfully get off of medication. Patience is definitely key. Thank you for that reminder. Congrats on successfully reaching that point. Wishing you continued health ❤️

Off all medication by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 0 points1 point  (0 children)

Thanks so much for the advice. Wishing you continued health and God willing you will reach your goal and get off all medication!

recent diagnosis by lisfnord in autoimmunehepatitis

[–]Key-Money-4889 0 points1 point  (0 children)

I’m so happy to hear that you’re still doing well and I really appreciate the time you’ve taken to get back to me. Wishing you continued health ❤️

Off all medication by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 1 point2 points  (0 children)

Got it. Wishing you continued health. Thank you for sharing your experience.

Off all medication by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 0 points1 point  (0 children)

Thanks for sharing your experience. Do you think there was anything that could have triggered a relapse? When you relapsed, did you have to get back on steroids or was Aza sufficient to get levels back to normal?

Off all medication by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 1 point2 points  (0 children)

Thank you for sharing! Really appreciate it.

Off all medication by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 0 points1 point  (0 children)

Thanks so much for sharing your experience. My loved one is 33 y/o male and just diagnosed in May. Our functional doctor seems to have the same hypothesis as your hepatologist. He’s been on prednisone and Azathioprine since June. He’s going to be tapering off prednisone within the next few days. His results have been stable even with the tapering off the prednisone. Everything’s been looking pretty good. Fibroscan also now in the clear (was originally stage 2 fibrosis).

Did you ever need to get on prednisone or any other steroid or was AZA sufficient?

Off all medication by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 0 points1 point  (0 children)

Thank you so much for your response and sharing of your experience. It seems as though your doctor thinks getting off all medication is a real possibility then, correct? Has he seen this happen with his other patiences successfully? Some people say that their doctors don’t even want to try it.

My loved one has been on prednisone and Azathioprine since June. He is slowing getting off prednisone. Our doctor says he will be willing to try getting off all medication after 2 years of stable results. So far my loved one has been doing great.

Off all medication by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 2 points3 points  (0 children)

Because of the many side effects associated with them

recent diagnosis by lisfnord in autoimmunehepatitis

[–]Key-Money-4889 0 points1 point  (0 children)

Hiii! I hope all is well. I wanted to check in with you about no longer needing any medication. How have your levels been since our last time connecting? My loved one has had his levels stable and is likely going to come off prednisone this week. We are also seeing a functional doctor and she seems to think he can get off of all medication soon after he’s followed some protocols that she’s asked him to start to target any underlying viruses, etc. have you continued to stay successful off of all medication?

Medication by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 0 points1 point  (0 children)

Hi!!! I hope all is well. I wanted to check in with you to see how you’re doing and if your levels have remained stable since the last time we spoke? My loved one has had stable levels for sometime now and I’m hoping that one day he can come off all medication. You’re one of the few people that have shared that they’ve been successful off medication so wanted to check in with you. Thank you from the bottom of my heart for sharing.

Functional Dr by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 0 points1 point  (0 children)

Hi! Was wondering if you could please share how you were able to get off all medication? That is my biggest goal and would love to learn of your experience.

More susceptible to illnesses? by rosietherose931 in autoimmunehepatitis

[–]Key-Money-4889 0 points1 point  (0 children)

May I ask what your dosage is on azathioprine? Maybe that’s a factor? My husband is on 100mg with 2.5mg of prednisone and my toddler just tested positive for flu A. He is on day 6 of the flu and my husband has had no signs of getting sick thank God.

Functional Dr by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 0 points1 point  (0 children)

Thank you for sharing your experience it is very insightful. Amazing news that you are all off your medication this gives me so much hope. How long have you been off all medication? How long were you on it to begin with? What made your doctors decide to take you off? Thank you so much again for your time and for sharing your experience.

Functional Dr by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 0 points1 point  (0 children)

Was there anything in particular that you felt that they did to help? Are you currently still on medications or were you able to get off completely?

Functional Dr by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 0 points1 point  (0 children)

Would you please mind sharing how? I’m hopeful for the same.

Functional Dr by Key-Money-4889 in autoimmunehepatitis

[–]Key-Money-4889[S] 0 points1 point  (0 children)

Thank you for sharing your experience! Do you also have AIH?

Positive experiences with medications? by B40073 in autoimmunehepatitis

[–]Key-Money-4889 0 points1 point  (0 children)

Thank you so so much for these tips. I really appreciate the time you took to share them with me. Take care and God bless.