I am just getting started on this site and have found a lot of the threads to be beneficial. I may have stated by I have had high ALT/AST since 2012. They go up they come down. I go ER and they label it Acute Hepatitis, go to a new PCP and she labels it AIH. Currently, I experience abdominal pain and swelling, serve itching, some yellowness of eyes, chronic constipation, extreme fatigue, hair loss. In my town(US) we don't have a hepatologist. I had to drive 2 1/2 hours away to get to a liver specialist. He runs new blood work, and has a liver biopsy schedule at a hospital close to my home. He calls me and diagnoses it as PBC but still wants the liver biopsy preformed. Well, on the orders its not specified as to what they are testing me for. So, the pathology test me for hepatitis and cancer. Results, unremarkable. Ok that's good glad we got that out the way. However, I was never tested for strains such as PBC or AIH (which as you know would be throughout the liver tissue if positive) So between the two offices its back and forth conversation to get my liver sample to the specialist because he wants a second opinion. Meanwhile, he wants to start treatment for PBC. I'm like I want positive confirmation from the strains. Guess, I asking for your input on this. Why is a long process? Also, most doctors want to start you on prednisone immediately. I would rather NOT. What is the protocol for treatment? What are some of the new drugs out there? I want to have all my information together before I sit down in front of him so that I have options. Currently, I do take hydroxyzine. I hate it I wake up filling hung over. I'm not sure if it helps with the itching because it just knocks you out. Also, I take B12 injections once weekly (one because I had gastric bypass) I don't see where this give me energy and Vit D 5000 mg 2x monthly (again no energy) Is there anything for the fatigue?
Sorry that is so long but if anyone has suggestions please share. When I go back there I want to have a working regimen in place.
Thanks,
Connie
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cfsummerford72
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Any liver disorder can give similar symptons (ie itching, fatigue to name 2 -apparently the commonest).
I have PBC, diagnosed December 2010. I took myself to the GP early 2010 (I am in the UK) as I had been itching badly for two weeks.
I never received any medications pre-diagnosis and wasn't on any nor had taken any since 1999.
I can't say regarding how the protocol in the US is. I know here in the UK (I live in England) I did follow a certain NHS Pathway GPs can follow. When my GP exhausted blood checks and I had a scan (showed pretty much normal liver and surrounding organs plus when I did have an appointment with the hospital consultant he said he could see clear bile ducts), that was when I was referred to hospital.
Prednisone (steroids) tend to be given for inflammation but I cannot say in your case why but it seems the norm if someone has AIH I have found (the leaflet you can see about AIH and also PBC are on British Liver Trust website as are other liver conditions).
With PBC the usual treatment is to start on ursodeoxycholic acid (urso for short) but again I can't say now for definite as a new medication came to the market notso long ago and it was in the US first (quite recently England) and it is Ocaliva (another form of bile component).
It does seem the norm in the US for patients being diagnosed with PBC to then have a biopsy whereas here in the UK it's not necessary if a patient is diagnosed via symptons ans bloods like I was.
Unfortunately urso is not the answer for ridding ourselves of fatigue or itching but it can improve on how we are. I did have fatigue in 2010 but never thought anything of it due to at the time my working life. After I started on the urso fatigue vanished for me sometime 2011 but the itching continued but over time it has resolved to late at night until around 6a.m. every day. I get tired some days due to broken sleep during the night.
I tend to be on the go most of the waking hours as I find I start feeling prickly and uncomfortable if I sit for long periods of time due to having PBC. This in my case might stave off fatigue I can't say.
I think you more than likely need a definite diagnosis and then medication regime and then you can take it all from there.
The wheels of the NHS turn slowly in the UK and for me I had 9mths from itching before I got diagnosed with PBC and started taking urso.
I'm in the US...near DC...I had routein blood work with physical and had elevated liver enzymes....had a normal ultrasound but more blood work showed liver enzymes climbing (1477) and was referred to heptologist....I thank God Every DAY that I have great doctors!!!
Heptoogist took history of my symptoms, family medical history and ordered detailed blood work and MRI....upon next visit I was diagnosed with PBC and put immediately on URSO and scheduled for a Liver Biopsy on May 9th. She wanted it sooner but I have a BIG EVENT (graduating college) on May 6th and just wanted to get past that...however, even with MRI showing inflamed and enlarged liver and spleen I was not put on prednisone...
Vitamin B is a water soluble vitamin...if your body does not need it at the time the shot is given it's a WASTE OF MONEY cause your literally gonna flush it down the drain...
.5,000IU of vitamin D 2xs a week is not sufficient unless you live below the pararell line of Dallas Texas in the US...otherwise you should be getting 2000IU a day of D....or take a 50,000iu 1x a week if your doctor prescribes it...but I'm not so sure what the link is between D and energy? D is normally used for your body to use calcium....but maybe there is a link there because our bodies use calcium in almost ever cellular process ever second of every day....
Good luck with your doctor....your one step ahead by educating yourself....read everything you can get your hands on BUT make sure your reading CREDIBLE sources....I've seen a lot of "liver health" sites out there that I would not go near with a 10ft pole!
You HAVE to TRUST your doctor....that is more than half the battle...learned that with hubby's cancer diagnoses....you also HAVE to be your OWN health advocate...don't put that in ANYONES hands but your own....learned that by being a pharmacy technician for 8 years....
Hi Connie, I can understand that u dislike the idea of being on Pred, its a horrible drug, but sometimes its the only way to get the acute AIH under control. I'm guessing that u'r doctor is waiting on u'r biopsy results prior tò starting u on it. There is another stetoid which is seems to be even better than pred but it only works if u're in the early stages of inflammation/fibrosis, its called Budesonide and it has much fever side effects than Pred - I would ask u'r Dr about it next time u see him. Stay positive x
Thank you for giving some great feedback. I have scoured through post wrote down every medication mentioned so that i can get his feedback. I will add this one. I am scheduled to go Monday morning. Hopefully Once I get on s regime I start to see some improvement. This itch is driving me crazy. Its mostly my back, trunk area, collar bone, head. I might as well said everything lol. I will post my visit results Monday evening.
Thanks for all the support so glad I found this forum.
Also, I forgot to ask, have u had u'r iron levels checked recently? Iron deficiency anaemia might be causing u'r fatigue. If that's the case then an iron infusion should help
Its border line low normal. However it has been low before and I had imfuron iron treatments. Most doctors just assumed it was from me having gastric bypass in 2012. My pcp says now i have high iron stores in my liver but not in my blood sream. She thinks thsts and the autoimmune is the reason for fatigue. I will talk to my liver specialist to see what he thinks. It does get hard working a full time job. Like I stated previously somedays Id rather not eat just to get a nap in (sitting in my car) If I dont I get the nervous shakes. Does anyone have problems with dry eyes mouth inside my ears.
There is nothing wrong with taking naps - if u can then do so The dry eyes and mouth could be caused by Sjogren's syndrome, which is another autoimmune disorder, and apparently if u have one autoimmune disease u're more prone to having others, u could ask u'r Dr to test u for it, in the meantime eye drops might help
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