Long time off of here due to life lol.

[Alley27]

Hi everyone. I have been away from pbc foundation for a very long time reason being my life has gone through a lot of changes over the past couple of years. I divorced the man who did not care or even try to understand my AIH/PBC...and who cheated on me so many times.....I actually have a job which the hospital said I would never do, and it's a brilliant job. I am an SIA licensed security operative and I work concerts and events all over the uk. I have met some fantastic people including artists like Adele and little mix to name a couple. Basically my life has been hectic. I came on here today because for the last few months am feeling a bit under the weather. My urine is very dark amber and smelly but no pain in kidney area so no infection....I also drink plenty of bottled water during the day except when travelling to London for work which is five hours to venue, a six to eight hour shift, then five hours back as I live in West Yorkshire. I am very tired and thirsty my skin itches and I have slight yellowing of skin...my eyes are yellow, but not like when i first was diagnosed in 2012. I have been to see my gp and I have to make an appointment to see hepatologist. The last time I saw a consultant was 2015 February. I did have an appointment Jan 2016 but they cancelled it and no one has been in touch with me since.

I am just so fed up with it all...I also don't like taking chemotherapy medication ( 6 mercaptopurine ) every day and want to stop this medication or at least try something else. My life has been so busy that I have not had the time to check up on new treatments and wondered if there are any changes or break throughs.

I am happy in my life now...I am with a very caring man who understands that some days I feel crap lol...there's a story with us though...we grew up together, our mum's were friends throughout their lives, they wanted us two together but it didn't happen...he joined the forces and I ended up with his friend also in the forces. He's retired now and has come back to live in our home town and after 37 years we are together and engaged....full circle as things that are meant to be happen.

I just feel so unwell...tired is my issue as is the urine problem. I also take urso for the PBC side of things and again this gives me nausea and bloats me out...I just want to feel well do you have any suggestions apart from the obvious rest...do less work and definitely less traveling.

Thank you for any help or information

love light and blessings xx

Th drink is only non alcoholic wine I promise.

[Ktltel]

Alley27,

It's great that you've found someone kind and understanding in your personal life. That's wonderful. And how exciting your job sounds for sure! But, this yellowing of your eyes, skin and urine is a definite wake up call. The fatigue and itchy skin is another common symptom that should be addressed as well. Many with PBC can be asymptomatic for many years and maybe even into the later stages of the disease too.

On the other hand, quite a few of us "have" symptoms... fatigue, dry eyes and mouth, muscle aches, itchy skin to name a few, (there are certainly more). From the beginning (for me Oct. 2016) I was told to have regular check ups, a regular schedule for labs and tests, a change in my diet was strongly suggested too etc. All of this was to watch what my PBC was doing and how I was responding to the medication URSO. It sounds like you were diagnosed with PBC and sent on your way. Was that the case? Have you had a check up or labs done recently? It was required for me to have labs done every 2 weeks for a while, then after 2 months it went to every 3 months that I had labs done. That's where I'm at still. But after April it will go to every six months. I see my GI doctor every 3 months, have ultrasounds every 6 months and see my hepatologist once a year. All of this is to closely monitor how or if my PBC is progressing and is the URSO working. And to answer your question, yes... there is another drug they are using to combat this disease. It's called Ocaliva. You can ask your doctor about it. It's helped quite a few.

It sounds to me like you haven't been checked out for a while. Is that correct? When you're asymptomatic it's sometimes easy to forget you even have this autoimmune disease. Right now though it sounds like you most definitely seem to be having some pretty significant PBC symptoms. I don't know, but something is happening with your liver and your body is talking to you.

I sure hope you will get checked out as soon as you can. Don't wait for them to call you, return your calls or allow anymore time to slip away. Many get lost in the medical shuffle and unfortunately PBC keeps marching on.

Let them know what's going on with you and how long it's been since you've been seen by a doctor.

I hope you get some answers soon and get on a regimen both medication wise and diet wise that can hopefully slow things down and get you feeling better ❤.

Take care and please keep us posted.

Stella

[butterflyEi]

Hi Alley27

So glad to read that you are in a happy relationship after such a miserable time and with a meant to be - funny how life can do that to us.

I have found taking URSO with dinner at night reduces the nausea and bloating.

I hope I do not sound to much like mother hen when I say to you that you really need to see your doctor, organise a urine test to be sent away and get the problem identified. As to the chemotherapy tablets could they be causing some of your problems? In which case the GP needs to discuss this with you.

I have found to my cost that here in the UK we have to be in charge of our medical lives otherwise we will be left behind, no one offers to help us without us making ourselves heard!

best wishes

[AngelaBarron in reply to butterflyEi]

So glad that your personal life is so improved. Life is for living!

But your liver sounds like it's objecting to something and is demanding attention from someone who knows what's what. Your doctor should do urine and blood tests and send you to see a specialist to adjust your medication. Don't leave it until another day, get the right treatment and feel better. You owe it to yourself. Good luck and insist on that consultation!

[Alley27 in reply to butterflyEi]

Hi butterflyEi....I intend to get the urine test done as soon as gp will give me an appointment. As for the chemo drug...my gp told me that she couldn't do anything about the medication because I am on shared care with hospital and gp and the hospital consultant needs to change this as he is the only one that can. I agree we do need to be in charge of our medical life.. and to some extent my asthma nurse who also does the bloods etc agrees with me on that one .

love and light x

[Alley27 in reply to butterflyEi]

Hi butterflyEi, I have listened to what everyone has been saying and actually have took action. I went to see the nurse yesterday because I couldn't get an appointment with doctor. I took urine sample with me as thought I have a urine infection. I told her I don't understand why but also that it could be related to the liver. When she tested the urine she said that the reason for the discoloration and the irritation was not a urine infection however my urine was full of sugar. When she actually checked my medical history regarding the blood tests she told me that my Hb1c has been high for a long time , over 12 months to be exact...and they never said anything to me about it. I never even knew I had been tested, or at least don't remember ever being told I needed testing. The advice was buy a glucose monitor and keep an eye on things...not to change anything I am doing for the time being as need actual diagnosis, and still need to wait until end of April to have another test because the tests can only be repeated every 3 months..yeah....very odd. I am so fed up lol. I also wonder if it is possible for this to be linked to my autoimmune liver disease and hashimotos....just not expected. Thanks Alley

[Alley27]

Thank you for your comments guys much needed advice and yes I agree. Other symptoms include severe cramps in legs, fatigue, dry eyes, my skin itches at night, my urine is dark and it sometimes burns but I expect that is to do with the bilirubin or some other bile issue. My bloods have been done 2 times in the last 14 months and both times there's been raised numbers. To be honest though I don't drink nearly enough when I am travelling because of the needing to pee issue, when it's cold it's worse lol. Also because we travel to London I cant take medication because I can't drink...vicious circle....I can't manage on benefits which is why I decided to start work and I have tried to claim PIP without success.

I went to see my doctor a week ago and she said that I need to go back to see consultant. I went through the usual to arrange the appointment and have been told that there is a 28 week waiting list....My last appointment was cancelled by the hospital 18 months ago saying that due to unforeseen circumstances my appointment has been cancelled for now and a new one will be made as soon as possible....nothing since.

28 weeks is 6 months and anything can happen in 6 months...I know I need to think about my health but what can you do when you cannot afford to live on benefits. My partner works for the same company and like me he has to pay his rent so not much left over. Yes..live together.....our friends suggest this but we have only been together properly for just over a year and need to keep both places for a while yet in case lol....

I think that my gp may be able to override the hospital appointment system when I actually get the letter and I will keep you informed.

Love and light Alley x