Hi,
I was diagnosed in 2011/12, started Urso but LFTs have never got back to normal. I've had an ultrasound which showed enlarged spleen and dilated bile duct, is this something that can happen with PBC ? Bit concerned, I've ended up having an MRI within 3 days of seeing consultant! Waiting for results.
Hello fifi61.
I was diagnosed with PBC in late 2010 when I was 46. My LFTs were abnormal and during 2010 they slowly started rising each blood check. I had gone to see a doctor regarding itching for a couple weeks in early 2010 and my LFTs came back showing as abnormal as in higher than they should have been.
Since I started urso Dec 2010 my LFTs have never returned to normal. They are not expected to return to normal but they can do over time. We apparently have some slightly different scale gauge with having PBC when the bloods are checked. I noticed on receiving my blood test results for all of 2010 that the last one the GP did in Aug 2010 had risen further as they had progressed so during the months of having them but then in the 3 months before I saw a hospital consultant at the beginning of November 2010, mine had actually started to come down on their own without any urso.
We can develop other symptons along the way with PBC even with taking urso as it is supposed to be taken to try to slow down progression of PBC.
Given PBC is due to bile ducts being damaged I expect it is possible that one could encounter certain things. I can't say regarding the spleen as I don't really know much about that nor what exactly it does. I know we can live without a spleen as said without a gallbladder.
Perhaps due to your scan showing certain things, it might be a case a hospital consultant wanted to verify it with a more in-depth type of scan. I had a pretty much normal looking ultrasound during 2010 as the consultant informed me when I had my first appt with him pre-PBC diagnosis (I was diagnosed via the AMA blood test).
Thank you Peridot , trying to get things into some perspective. I do have some medical knowledge having been a nurse and now a dietitian in the NHS, I think a little knowledge in my case though has probably been a bad thing! when I was diagnosed by blood test I had never heard of PBC despite 30 years in healthcare, I'm the only person in my GPs with it too so they are no help in answering any questions. I find the support from the Foundation and the posts on here very helpful. Find others find it difficult to understand how I feel because I look "normal" can be quite frustrating. Thank you again.
Hi,
Hopefully the MRI results will clarify a lot of things. As you have mentioned, being a nurse does not necessarily make things easier. Sometimes, not knowing certain details is more helpful as it does not trigger unnecessary stress. You have mentioned your LFT's have never gone back to normal. But have they improved after the URSO treatment? Have you been given the right amount of medication? Dosage is the most important factor and it is calculated based upon your body weight. Enlargement of spleen can come as a side effect of PBC but can also be caused by other inflammatory diseases. I hope the MRI results come back normal and you can rest assured. I am nervous as well, as tomorrow I am scheduled for a Fibroscan which will measure the degree of fibrosis in my liver. Stay well and try to think positive!
Fingers crossed for you, They were looking for gall stones in my liver and ducts when they did mine, or so they told me in the MRI unit
Hi. Everything you are saying is as a result of pbc. Usually the spleen starts to enlarge when the liver is under pressure. I'm stage 4 with a spleen of 16cm and my bilegs ducts are also dilated. Some times it can be a sign of an infection or a blockage from a gallstone. Just out of hospital after 8 days due to an infection in my liver. Do t know what's caused it but was extremely jaundice and sick. Colour is coming bk normal again and infection is clear. Pbc has so many other secondary symptoms as a result of the disease. Bit you'll find they are common enough between pbc sufferers.
Hope everything goes well for you keep us updated. Best wishes
lynda xx
Hi Lynda, I'm Cindi and I live in New Mexico, USA. I am also stage 4 ("end stage"). Is that the same for you? I've been on the UNOS transplant list through the Mayo Clinic in Arizona since 2007. As of 6/26/15 I have a MELD of 16. I was first diagnosed in 1998 and am now 61. I have all the usual symptoms and have the most trouble with encephalopathy and fatigue.
I'm interested in corresponding with others who are stage 4. Hope you are doing alright. Bless you,
Cindi
Hi cindi. Thanks for your response I'd be delighted to keep in touch with you. Not on a transplant list yet . Even though I'd say it's not that far away for me . Pbc is so complicated at times since January I'm really going down hill. I'm. I'm on fb or can give you my email if you would like to get in touch that way too.
Best wishes xx
Hi Lynda, I'd be happy to correspond with you through FB. What is your MELD? I'm on many meds and Lactulose for my high ammonia levels (dizziness, fuzzy thinking....) and of course, the universal Ursodial!
Take care and laugh a lot!
Cindi
I too have not had normal lfts since diag but consult doesn't seem worried about this as long as they are around my normal and I think that is the case for most people. The enlarged spleen can be a side effect of pbc which also have. ..again they don't seem worried by this and its been enlarged for years. I know the bile ducts become scarred but wether this means enlarged im not sure so would imagine this is what you had the mri for.i has several scary moments e.g. lesions in spleen and lungs also shadow on colonoscopy which then had hurried ct all of which turned out to be nothing overly concerning but it's so easy to worry. Working in medicine probably makes it harder for you ...the main thing is you have been checked quickly with the mri and that is good. Some consultants are much quicker of the mark than others but also pbc being rare sometimes makes them over cautious. Im 16years on with pbc and still have my panicky moments but try not to worry and crossed fingers its not anything of great consequence.good luck cazer.
Same here, ALP never has returned to normal with Urso. However, the LFT may be worse if I didn't stay on it. I was diagnosed Dec. 2012. Started Urso Feb.2013. I've had 2 MRI on liver & things are good, but I know from the LFT that PBC is slowly progressing & it worries me a bit. I just hope/pray that I outlive a transplant. Some people live 30+ years & never progress out of stage 1. Hang on to that thought & "keep calm & carry on!"
Thank you all for your advice and your experiences, my LFTs have been getting steadily worse and have some results that might suggest AIH/PBC overlap, so i havent responded to Urso, or maybe it would have been worse if off it as you say Wendy. It really helps to hear from you to get some idea of whats normal for us! wishing you all well. Xx
WORRIED MUM
Worried and Confused
worried no medication will help
Alkaline phosphatase results worried 
Worried I have PBC.
