Been a rough week here. We had 2 deaths in our family and I drove from Indiana to Kansas and back to Indiana in the course of 3 days with my elderly mother and my 4 month old baby in tow.
Saw my GI Friday, which is why I drove home immediately following the funeral.
Anyway, while I was there she said how well everything was going, said she would leave me on the 20mg Prednisone for a month, then 15, then 10 for maybe 6 months and see how low we could taper it without a flare of AIH. She said it was early for the PBC, not much bile duct damage yet but that the AIH was very aggressive. I asked if she thought this was manageable for the long term and she said I was responding well to the treatment. She said when she first laid eyes on me she thought we were in a much worse place. She ordered LFT since I was on the way to the lab for a CBC due to them being unable to read my a1c.
My bilirubin is down to 4.8, but everything else is rising.
My Alk Phos 280 to.365
AST was 76 now is 89.
ALT was 105 now 152.
I lost all the progress I had made during Oct. Everything is back toward the September levels.
My cholesterol levels are soaring despite a very good diet. I'm doing everything I can on my end. I exercise daily. I eat an anti inflammation diet, low sodium, heart healthy. I have a referral out to the cardiovascular clinic to see about my cholesterol levels but have not seen them yet.
I don't know. I'm just feeling discouraged. I'll call my dr on Monday I suppose to see what she thinks.
I was so hopefully I would be close to normal range because despite the bone/muscle pain, I feel better overall. I assumed that meant I was getting better.
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IAmTheGlue
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Stress has a big impact on our bodies. Seems like you had a lot of that lately. Once you are more settled, it will probably improve.
Don't worry yourself sick so that your stress levels are manageable & discuss your concerns with your doctor. Once you & doctor have a game plan, you will feel in control.
Try to see your doctor as soon as possible so that you can dissipate the stress.
Sorry you are going through so much. Think positive & you will be fine.
Sounds like your GI has a plan. My understanding is that people with pbc tends towards a higher lipid profile, but it has no rendering on the heart disease risk.
To be on the safe side, my doctor recommended a cardiologist to get another opinion. There is a test called the coronary calcium scan which tests if you are at risk. Unfortunately insurance won't pay for it. It costs ~$100. See what your doctor or cardiologist say.
It’s of no concern st this time. My thoughts are it probably happened years prior to being on statin. Statin kept my lipids perfect. So I’m concerned now that I’m off due to PBC. Will be discussing that in the near future...like real near, lol!
My Hepatologist told me it was safe to go back on statins. I was off them for maybe 1-2 years. He put me back on as he didn't like the cholesterol numbers. But I also consulted with my GI/Primary & cardiologist before going back on.
We are seriously considering moving so I can be treated at the Mayo Clinic. My husband is fortunate enough to work for a company that transfers worldwide.
Seriously the cold is cutting right through me this year. He says he'll ask me to decide if I want to stay here when it is -2 outside.
I dont think stress affect our blood readings when i got a diagnosis of pbc in oct i became depressed and suffered also with anxiety i changed my lifestyle no alcohol low fat diet etc
My levels came down before i started urso in december
I was somewhat surprised
I do rest a lot maybe that helps
My family are reared so i can relax when i come home from work
Because your bilirubin is down... I'm wondering if this is an AIH thing. It was my understanding that LFT's will fluctuate with PBC. Not sure how AIH effects those. But it's the Albumin and Bilirubin that needs careful watching where PBC is concerned.
Could stress have kicked you into an AIH flare?
You were in my state... Kansas.❤.
I know it's discouraging when we see those numbers go up. I hope they'll figure it out. Try not to let stress get you, ... easier said than done I know. You said outside of the bone and muscle pain you feel better. That's great!! When I had arthritis pain before I was diagnosed with RA, my numbers were elevated. I was told inflammation can make your alk-phos rise. I'm not sure about the other LFT's.
Good job too, eating right and exercising!! 👍👍👍Keep it up. Let us know what the doctors figure out about it all including the cholesterol issue. I'm interested to hear what they say. Hang in there.
Thank you, I will keep you updated. My husband said do not panic. Stress does affect me physically. If I'm super stressed out I'm in so much pain I can barely move. I've always managed this by trying to keep my stress level low.
My albumin is going up into normal range, it was too low when this all started and my bilirubin continues to drop, so hopefully all is well.
sometimes bloods can vary quite at lot over the years.. ive had pbc for 19 years and over that time.... sometimes I think in response to stress... other illnesses.. etc also what I m eating.... but do get checked again. best wishes cazer.
Thank you, I appreciate the input. I hope that you are doing well. My doctor never mentioned fluctuating levels may be normal so I was not sure. My husband is very sure it was related to me driving so much and not sleeping well.
He actually thinks things won't return to normal until after the holidays. I host Thanksgiving for our family and a bunch of stress that comes with that.
I'm so sorry that so many stressful things have piled on. You need a break! I wouldn't doubt that all the losses, the stress and driving back and forth-- just being off your normal day to day could throw things off.
For thanksgiving, maybe you can start thinking now about ways / things you can do (have others do) to make it less stressful on you. I know I have to remind myself that I'm not Superwoman anymore-- and I have learned to "let some things be less than perfect" 😬
Try not to let this one test throw you for a loop... (easier said than done). Take care of you.
I appreciate the advice. We are going to try to buy some prepared foods this year and try to do it that way. No way I have the energy to do it all.
I do like the advice of "letting some things be less than perfect." My daughter is 15 and she pushes herself so hard academically. I have to remind her "do the best you can without killing yourself or driving yourself insane." I should take my own advice.
Agree that A lot of this is stress and exhaustion and maybe dehydration. I’m sorry you are going through this. I’ve read on here to expect ups and owns on the ALP which i am experiencing (375 to 250 to 225 to 305 to 274 over the last 6 months) and on my last blood test my ALT and AST ticked up just a smidge. For me i know it is that i am plateauing on the Urso and need to start Ocaliva. I would def ask your doctor more questions about why they think it is the AIH and not the PBC. I wish i had more comforting words and i hope you can find some time to rest.
I'm sorry to hear you are plateauing on the URSO but I'm so glad the Oclavia is available now. I'm expecting a call from her early this week so I'll see what she has to say.
Hi, You talked about plateauing on the URSO. Did your doctor tell you this could happen? I was just wondering because as you know my alk-phos is climbing lately and you mentioned to me on another post that I may need to add Ocaliva to my repertoire too.
Something I've been thinking about is this whole thing about generic vs authentic Ursodiol. That one post by Lucky4 (I think that was her ID name) she stated that in some generic drugs they (the drug manufacturing companies) were only required to use 80% of the real drug. If this might be the case with generic Ursodiol, could this be the reason it isn't as effective in our cases?
Ursodiol is weight based, so if this 80% thing is true with our generic URSO then actually for me, I'm not taking enough of it. This would make sense why my alk-phos has just fluctuated and is now actually climbing.
I wouldn't raise my dosage without finding out for myself though. But if the manufacturer of my generic URSO Forte only requires 80% of the actual drug, this would make sense.
The pharmaceutical company that makes my Ursodiol is called Allergan. I'm not sure I'm spelling that correct. My pharmacist gave me that information over the phone.
Anyway, I'm gonna try to find out. I can't remember if you said you were on a generic URSO or not. I may be reaching for straws here but, it's something to consider. Especially since I can't afford the real URSO and my insurance may not cover it anyway.
Yes Stella - my doctor put me on ocaliva because I seemed to have plateaued on the Urso ( ursodiol is what I’m on). I’ve been on ocaliva for about ten days. I’m itchy at times for sure. But it does seem to be working in only one week -had another blood test and saw improvement, incredible. Hoping it continues. Def ask your doctor about this. Take care!
Ottley3...the one concern I have with Ocalvia, is the fact that it suppresses the bile acid. Seems to me it would be healthier to let it flow. Your thoughts?
Ottley3...excuse me for posting again but it suppresses “production “ of the acids reducing exposure of the liver to toxic levels of the acids. That’s all great but does the suppression put more stress on the liver???
The more I read the more I’m confused! Like if it’s supressing the bile why does it also have itching as a side effect? thank you for this and adding to my list of questions for next dr appt.
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LFT bloods weird
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What are your opinions on a vegetarian diet for PBC and AIH?
