Newly diagnosed with PBC

[littledragon23]

Good morning everyone

I have been following your blog posts already for the past few weeks and found your advice on this site very useful and re-assuring. So, thank you very much everyone!

On Wednesday I had my first appointment with the Liver specialist who confirmed my GP's diagnosis of PBC. I saw my GP in March for something very different and my LFT's came back very high (Gamma GT 970, Alkaline Phosphatase 400, with the transaminases only slightly raised GOT (AST) 58, GPT (ALT) 125 and a normal bilirubin, but I also had a high IGM - when my GP looked back at my previous bloodtest it was noticed that I had already last year very high LFT's, but for some reason no one took notice of that. Well, I was so shocked and the first thought which came to my mind was - I DON'T DRINK, oh my god what is happening to me? I was utterly scared for several weeks. Nevertheless, since I have been browsing your blogs a lot of my anxiety evaporated and I found myself much more calm about the whole situation, which did help me immensly on my first appointment on Wednesday

The liver specialist started me on Urso straight away at 15mg/kg 900 mg a day (also looking at my current weight that works out more than that).

However, I have been quite unwell since I had atypical pneumonia in January/February and had lots of problems unrelated to the liver. I have pre-existing stomach/gut problems and had for the past two month increased complaints and abdominal pain (middle and left side), but my GP felt that could be due to my high LFT's, which is not the case. I am awaiting now an OGD endoscopy to see if I may have got duodenal ulcers. I am to have some other investigations as well, but the doctor said that we first look at the blood results and wait for the OGD.

What did puzzle me a bit at my specialist appointment was that my doctor said that my pre-existing health problems don't quite fit the PBC package and now they are looking for other things (I only thought great, as if I don't have enough already). My pre-existing problems are congenital spina bifida with diastematoyelia (which causes chronic nerve compression and other pain since I am a teen), partial paralysis in my left leg, Raynaud, cryoglobulines ? (being tested as there have been confusing results) and chronic stomach/gut problems (I have been on a low fat/low sodium diet almost all of my life) and these are only some of my problems. What are your combinations of other health problems in conjunction with PBC? I have seen some of them already mentioned on the other blogs.

My main problems at present are fatigue, itching and sore joints, swelling of fingers and ankles, some kind of minor memory loss and I seem to have developed a spelling problem (English is not my first language, but I actually never had any major spelling problems) the abdominal pain with nausea ( I have lost over 6 kg in 4 weeks). I did have problems - which are gone now - with vertigo and headaches, but since these dissapeared I feel like a new person.

Nevertheless, despite all my health problems I always have been very active as my parents taught me from a very early age not to look at my limitations, but at the things I can do and make use of that. I have always had a very positive attitude and whatever comes now just has to arrange itself with my needs :).

Oh my, I just noticed that I managed to write a novella. I do hope you forgive me for that.

[JennerLayne]

Hi Littledragon,

Welcome to our group! I too, am very new here and hope to have results (staging) tomorrow from a biopsy performed five days ago. It is unsettling to hear you had abnormal blood tests a while ago that were overlooked, only to have time advance forward and learn about your PBC now. I found myself in a similar situation several years ago when they monitored me for enlarged abdominal lymph nodes, thinking I had the start of Lymphoma, only to learn recently, it's actually PBC.

I've had some fatigue and joint pain, along with swollen fingers and hands and red dry palms for about 9 months, however have had digestive issues the last 20 years of my life. At the suggestion of my Gastro, I recently went off gluten which quickly helped the fatigue, joints and swelling and have noted my skin has also cleared (dryness in palms and a horrible case of rosacea). I first noticed my Raynaud's within a few days of having a migraine variant that disguised itself as a stroke and sent me via ambulance to the ER (10 yrs ago) I swear --- that's when 'the switch' to my good health got flipped, and I haven't felt nearly as well since! There are some other autoimmune issues showing up in my blood work, along with anemia, and my Rheumy and Gastro are working through to identify them, but agreed to address this new diagnosis first.

This group has been absolutely comforting to me, as my husband is in denial (afterall, I 'look quite well, and feel somewhat better, especially after eliminating gluten') and I haven't opened up to family members yet. I've been quite down, but these folks give me a lot of hope because they are showing me we can live with this and not let us be pulled down by it.

Keep us posted on your upcoming endoscopy and keep your head up! : )

[littledragon23 in reply to JennerLayne]

Hello JennerLayne,

Thank you very much for your warm welcome.

I am hope you don't mind that I am curious about your biopsy results. Did they just do it for staging? As I do work in the UK (I commute and do live in Germany) I am treated over here. I have been told they only do liver biopsies here when they need more clarification in regards to diagnoses. Apparently when there is no doubt that it is "only" PBC they don't bother with it as it is quite an invasive procedure. I have also been told that the staging is irrelevant as they can't do anything about it, whatever the result might be.

I find it very interesting to see that soo many of you are on a gluten free diet which seems to work for you, I wonder if that is because you do have Rheuma problems as well? I have tested negativ to gluten intolerance and that's why I didn't change anything in my diet and I am more less on a low fat, wholemeal mainly vegetarian diet, although I don't seem to have any gluten products on a daily basis. I sometimes to eat fish or chicken, but otherwise I get my protein from Quinoa and pulses. I am also a great green smoothie fan. *smile* I think you can *see* that I am a food lover.

In regards to family. I am very sorry to hear that your husband is in such denial about your illness. However, I have found that all people are different and cope differently with illness and especially when people are scared they try to avoid thinking about it. Maybe in time he will understand better how you feel and how everything affects you and then he probably will be able to support you in a much better fashion.

I can count myself very lucky to have such a supportive and understanding family. I have been a single mom for 10 years now with a wonderful 13 year old boy and my parents have always been a fantastic support for me. As I commute between the UK and Germany they look after my son when I am in the UK to work. When the diagnosis was suggested by my GP in March, the first thing my parents did was to find out more about this illness and how they may could support me better or in a different way. The same applies to my friends who have also been very supportive and understanding.

[Hidden]

Welcome Little Dragon, what a lovely positive person you sound.

[littledragon23 in reply to Hidden]

Hello donkey,

thank you to you as well for the lovely welcome. I have seen that you are in the UK as well. May I ask which part are you coming from?

I also have seen on one of the other blogs that you are like myself on a low fat diet. I sometimes found it very difficult to get enough fat and recently found that I tolerate Avocado very well, which helps me to accumulate a healthy amount of fat. Avocado in all form and shapes has become a daily staple for me over the past few month.

[losmos190]

Hi

I too am newly diagnosed with PBC following abnormal LFT tests over the past 5 years. I'm a man (the consultant tells me we are in the minority!) I've just been put on URSO tablets (3x250mg) and told to continue with six monthly blood tests through my GP. The consultant suggested that I have probably had the condition for many years, but that as it wasn't adversely affecting my life I should just continue with the LFT monitoring via my GP. I'm 64 and spend part of each year in Spain, so a healthy Mediterranean diet certainly helps! I only have a mild (scalp) itch, so feel very lucky. Having known very little about PBC I found this website very helpful.

[littledragon23 in reply to losmos190]

Hello losmos190,

*smile* healthy Mediterranean diet sounds good to me and I agree with you I also found this website very helpful and very comforting. Especially, when I initially googled PBC everything did sound very bleak and I was very upset to start of with. However, after I read here that there are people who live with it already for decades I just felt I can do that as well.

Did you experience any problems being on URSO? And how often did your consultant suggest to monitor your bloodtests? Being part of the year in Spain probably means that you do have a GP there as well. As I commute I do have a GP in Germany, so everything what is done here, I usually get copies and vice versa in Germany. That maybe something you should consider doing as well.

[PBCRobert Partner]

I just wanted to leave a quick reminder that there is more information available once you join the PBC Foundation.

You can do so here:

pbcfoundation.org.uk/Primar...

Yours,

Robert.

[littledragon23 in reply to PBCRobert]

Thank you for the link For some reason I thought I joined already.