Reversal of fortune in bloodwork but staying positive

[Ottley3]

Diagnosed in 3/2017 from a blood test. No symptoms just elevated enzymes. I started Urso and was a partial responder -biopsy confirmed stage 1pbc in September. Started ocaliva in November - strong improvement in enzymes initially then more gradual- bloodwork 3/28/18 had ALP 188 (down from high 300s at diagnosis and AST ALT almost normal. Bloodwork from 6/20/18 so surprising and disappointed. Almost back to where I was pre ocaliva. ALP back in the 300s and AST and ALT elevated also but not dramatically so. Cholesterol rising from Ocaliva as well. Only thing different between March and June is I switched a birth control pill, and I did notice some symptoms like fatigue and my itching increased. Hope it’s a blip but a bit discouraging. Discarding the birth control pill and Repeating blood tests next month along with mri and MRCP. So that’s my update. Feeling great beyond the itch and some twinges. Im taking good care of myself and trying not to dwell on it. Thanks as always!

[FranSP]

Good morning Ottley, it sounds like a very uneven journey. Your doctor seems on board by ordering additional testing.

Keep us in the loop with the test results.

I do hope for the best.

[ninjagirlwebb]

You have a good attiude which is great! Hopefully it is just a blip. In the mean time, enjoy the Summer!

[AliceYZ]

I can empathise with you. I have changed nothing in my diet or meds and now have to go back on higher doses of Prednisone. I was only off Prednisone for 2 weeks after 5 1/2 months. I am stage 3. Let's stay positive. I like how you are calling it a "blip". Diabetes runs in my family (4 of 8 siblings) and Prednisone can increase the likelihood of getting it. The pharmacy expresses concerns every time I pick up my prescription. Today to keep my mind off things I walked an extra 2 miles. Can anyone diagnosed longer than us let us know if this is common to have good results then for some unknown reason Liver Function levels rise again? Thanks!

[Michi1 in reply to AliceYZ]

Did you doctor explain why you’re taking prednisone? It’s not generally given for PBC and has horrible side effects. Even for those autoimmune diseases where it is used, it’s not a cure. It treats symptoms by reducing inflammation (which can often be done successfully with the right nutrition). I’d go back and ask, and consider seeing a Hepatologist who focuses on PBC if your doctor doesn’t specialize in it.

[AliceYZ in reply to Michi1]

Good question. I should have added I have PBC/Autoimmune Hepatitis overlap syndrome. My Hepatologist is from RUSH Hospital in Chicago and a specialist. I am on the Prednisone to reduce inflammation. I am also on URSO and Myfortic (Autoimmune Suppressant). I am on a stricter diet and think that is so beneficial. I get labs every 2 weeks and see Hepatologist every 3-4 weeks. I do plan on asking him if there is another option or what the negative is if I don't take the Prednisone. The side effects are not the greatest.

[Michi1 in reply to AliceYZ]

My ex had sarcoidosis and there were a few times he was on prednisone for 2 or 3 months. It was awful. The first doctor I saw diagnosed AIH and tried to put me on steroids. I refused and later learned his diagnosis was wrong.

[AliceYZ in reply to Michi1]

Thanks! Appreciate the information.

[butterflyEi]

Hi Ottley3

sorry to read of the change to your blood results. such a good idea to get them checked again in a month after coming off the only change in your routine. I have read that it is good to take your results over a long period to get the big picture. Had I known tht back in 2006 I would have started a collection then! I hope this is just a "blip" for you but let us know how you get on.

best wishes

[AliceYZ in reply to butterflyEi]

Thanks! I love that my Hepatologist and Hospital have an app for the phone that posts all lab/med results so I can keep track. it also shows what I owe in copays for insurance. lol

Hope you are doing well.

[DonnaBoll Administrator]

elevated cholesterol can happen with Ocaliva.... just make sure each time you have labs drawn that a CMP - comprehensive metabolic profile - is done too to monitor this. Love your attitude!!!! keep on living life! Are you on the lower dose of Ocaliva? 5 mgs