Hello I new to this blog. I was diagnosed with PCB and overlapping AMA. Beside the Pcb I also have large cholesterol bumps all over my body for two years. Does anyone have Pcb and cholesterol bumps too? How did you get rid of them? I will be seeing a cardio doctor in September to see if he can help me. He did mention something about a plasma transfer?
Also I been taking steroid and urso since being diagnosed with Pcb. My doctor is putting me on Octavila and also urso
Is anyone taken both meds to help them with the pcb. Did ur help you? My dr said Octavila will make me itch even more.
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Prettyeyes79
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Hi prettyeyes79, not sure why you on steroid , not indicated for PBC, ask doctor why he changing / adding meds, have heard Octavila may increase itch but improve LFT's. some cholesterol numbers are higher in PBC patients ( due to PBC). I have been put on pravastatin 20 mg to see if 'bad' cholesterol will go down ( getting blood tested soon) Liver dr says some studies show that statins have anti inflammatory effect on PBC patients. However, I don't have cholesterol bumps so can't advise.
Cholesterol bumps or xanthomas are not normally harmful to us but your doctor will want to find out the root cause. For myself it was high cholesterol and I have been on statins every since. My xanthomas were under my eye and the doctor did not want to interfere with that area as being so close to the eye it can cause problems. Eventually it irritated me so much that I continuously picked at the fairly large spots that I had and they disappeared and fortunately have not returned. I have read on other sites of others who have a lot more of these deposits.
Here in the UK Ocaliva is available for non responders to Ursodeoxycholic acid. I have read that many who are on Ocaliva suffer with the itch, some for only a short while others for longer. Are you a non responder to URSO? As Belliver suggests not sure why you have been prescribed a steroid for PBC - do you have another disorder that needs the steroid?
If you have not already joined the PBC Foundation then it is worth it. Free to join through the icon above The Bearfacts magazine has some useful information in the back copies. There is an article on the ITCH in the spring 2015 edition which is worth a read.
I see you are in the USA and if you are new to PBC do you know about the pbcers.org who are based in Texas in America, this is another useful source of information.
I'm taking prednisone 5 mg. I'm not allergic to Urso. I will be taking Urso and Ocalvia because my test results are not improving with Urso by itself.
On your bumps near your eyes, did you put any on like apple cider or garlic
I was reading and done pcb patients put apple cider on the bumps to get rid of it. I haven't try that. Yes I'm in Texas. I found this website to read about other pcb with the same problem that they face like me
No I did not put anything on, just fiddled with them (made them a bit sore!) but all healed over now. If you are going to try it do let us know what happens. Apple cider seems to be recommended for a good deal I wonder if it is for its antiseptic values.
I always think how fab this site is, great for sharing our PBC problems
Like the above respondents, I'm not sure why you are on the steroids, and I would ask your Medic far more about this. Urso is the main treatment, and Oclavia is now given to those who don't respond to Urso.
Also, I don't really know what you mean by: 'diagnosed with PBC and overlapping AMA'.
As far as I am aware (all of this comes from my own leading UK PBC Specialist): PBC is a distinct condition (although people with it often have other, separate autoimmune conditions), and the presence of AMAs (antimitochodrial antibodies, specifically AMA - M2 ... or AMA sub-type M2) is one of the main diagnostic features that helps to tell your Medic that you may have PBC. The other main diagnostic criterion for PBC is abnormal liver function tests (lfts) that are typical of PBC - usually both of these are present for someone to be diagnosed with PBC.
If you have AMAs, but your lfts are normal, you will most likely have your liver function tests monitored over time, as some people just have AMAs-M2 without ever developing PBC (it's been known I have AMAs since 1992, but I'm fit and healthy and don't have PBC or any symptoms). However, if your lfts are typical of PBC, the presence of AMA-M2 - as well - is enough to diagnose PBC. A biopsy is sometimes offered to people with abnormal lfts, but no AMAs, or to those whose lfts are normal, but have AMAs, plus strong symptoms of PBC.
The only thing that I imagine 'overlapping AMA' may mean, is if you have some of the other subtypes of AMA. PBC is linked to the sub-type 'M2' of AMA, but there are about 6+ other different sub-types (AMA- M1 ... etc) and they code for other autoimmune conditions. I don't know if the steroids could be related to another AMA related condition?? If I were you, I would want to know more.
However, as already suggested, I would check out the website of the 'PBC Foundation' (link at top of page) as you will find phone and email links to talk to their trained advisors - who are wonderful. Their website is also full of great information.
Sorry this is so long and rather complex, I've tried to make it clear, but do get back to me if there is anything you don't understand.
Hello, I too am unclear as to why you are on a steroid. Plus the AMA is a marker for PBC. I have known of my PBC since diagnosis in Aug 2012 at stage 2. Started the Urso 500mg twice daily. Lost my insurance for a time & progressed rather quickly from stage 2/3 inot stage 4 in the last two years. My GI then referred me to my university heptologist at Indiana university hospital. The Urso stopped working on it's own so he started me in the Ocaliva 25mg once daily on June 9th. I can say my numbers are finally going the direction they are supposed to be. Yes, the itching can increase taking Ocaliva because it is a side effect. Thankfully, I have not itched any more than I already did before Ocaliva. I believe you might have some things confused with the AMA. Plus, you really should ask why you are on the steroid. Please keep us posted on your findings.
I have been on urso since 2005 and started the Ocaliva this past December. My numbers hadn't improved during my last check-up which was in May, but I was also only taking the Ocaliva every other day due to the severe itching, now I'm daily. I go for more bloodwork mid-September.
It has actually gotten better, but I do have scratch sores on my back, abdomen and some on my upper thighs and bottom. Mainly more st night when my body temp rises.
My doc discussed pros and con of prescribing steroids for me. I also have an overlapping autoimmune hepatitis which effect the meaty part of the liver as compared to PBS attacking the small bile ducts. I think steroids were an option to reduce the liver inflammation. My doc's thinking process was he wanted me to go as long as my liver was holding up ok, he would spare me the side effects of steroids as long as possible. I have four simultaneous liver diseases. If I were to make an uneducated guess, it would be that he might trying to settle down an inflammation process in your liver. I have heard other support members with overlapping AIH, that they were initially on twenty or more mg. Then tapered down or off as the inflammation got better. In my case I have two medical issues that lead to osteoporosis with family history of osteo, so I wasn't a good candidate for steroid.
With all that said "ditto" with everyone here suggesting you ask your doc what he is treating with the steroids. I think your doc has a valid reason and just forgot to tell you the "why."
I'm been taking Oclavia for two weeks, before I go to bed. I'm not sure if everyone has the side effect but I do get a mild itching and my body hot. I can tolerate the side effect for now but I'm praying it will stop.
I do thankful I have this website that others can feel my pain
I have been away from the site taking care of family affairs for a while but I saw this today and wanted to check in with you and see how you are doing with the itching and how many mg.s you are on.
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