My partner has PBC, just looking for some help, advice and support

[djws]

My partner has been diagnosed with PBC, first diagnosed around 4 years ago and has been living with it since then.

She has been taking Urso for around 3 years but according to the doctor this has not really had any positive effect - the PBC is apparently getting worse and there is now signs of cirrhosis on the liver, according to a recent biopsy and also to readings from blood tests.

All of the medical results are fairly bad by all accounts although my partner actually feels relatively ok - the only symptoms are itching and tiredness.

However, the biggest and most immediate problem is that she has no idea of how bad the situation is - for example, the doctor recently spoke about liver transplants but would not say when that might be necessary or how long we have until it would be needed. So the unknown element is really worrying us both.

I don't know what the levels are or anything, but I know there is scaring and the doctor told us that my partner is graded as Childs A (I believe this grading system goes from A to C).

I have joined here just to see if there is any advice from other people who also have PBC.

I would like to know more about how to change diet (We are both already completely avoiding alcohol and eating healthily (following slimming world) but now we are thinking about making further changes - at the least trying to further limit salt, fat and sugar and possibly looking at becoming vegitarian / vegan if that would benefit.

Also have been looking up other things relating to diet that might not be good - for example aspartamine in diet coke - which we drink quite a lot of currently so thinking about giving that up.

Keen to hear from other people with PBC as well, and how you are coping with everything.

[Oidra]

Have you joined the PBC Foundation?

[e-mail] (free)

helpline 01315566811

By getting the correct and up to date information you may be able to understand better what is going on.

[djws in reply to Oidra]

Thanks for the quick reply, my partner has joined this foundation already, but i will join as well, to get some more info.

[Shulsey]

Hello, it's truly awesome to know that you are so supportive of your partner. I unfortunately do not have a partner who is as supportive. Which makes things difficult & hard for him to understand when he refused to become educated on what we go through. I am 44 yrs old & was diagnosed at stage 2 in 2012. I am now at stage 4 (which is end stage) with F4 non alcoholic cirrhosis, grade 2 varicies, hyperthyroidism, being treated for fibromyalgia & lupus. Once you have one autoimmune disease it is very common to have more fall in line behind. I have progressed faster than most due to the treatment of Urso becoming non effective after going 18 months without treatment. Once I was placed back on Urso it just no longer worked for me. That's when I was referred to my Indiana University hospital heptologist. He added Ocaliva to the Urso which has turned out to be a blessing. My numbers are the closest to stable as they have ever been. Yes, I am at end stage cirrhosis. But my hep Dr said that I shouldn't need to be placed on the trans list for another 5-10 yrs (that was 2 yrs ago). I no longer work due to doctors restrictions like lifting anything over 10lbs. Anything strenuous could cause a varicie bleed which isn't any fun. I do tend to push myself too much from time to time. I have two daughters, one is close to 20yrs & one 9 yrs. So, they keep me on my feet. Sometimes too much. You learn to listen to your body. When you feel like you need to slow down, just do it. Stay healthy & as active as you feel you can. My story is such a long one. I hope I didn't scare anyone, because we are very capable of living happy lives. Just keep up with all the bloodwork, tests, & procedures. I know it's A LOT. But, it's a must to keep fighting. Pray for new research & ask questions. Always keep a journal of symptoms & questions to ask at appointments. We are not doctors here, but sometimes we know things that they really cannot grasp. Because we're living in this journey together. I will be traveling three hours on Sunday to see my heptologist on Monday. I cannot make that drive alone so my sister-in-law drives me. I can hardly take riding in a car for that long. I do have some great days. But then there are days that I feel so much older than I am. Shoot, some days my 74 yr old mother gets around better than I do.

I always say...

Stay Strong❣️

Shannon

Southern Indiana

I hope I have helped a little

[djws]

Hi Shannon, thanks so much for taking the time to reply. Its really helped hearing your story and its giving me some hope. I mentioned Ocaliva to my partner and apparently that is the drug they are now going to prescribe to her - we are just waiting for the pharmacist to source it because apparently its not at all common in the UK. So hearing that has worked for you gives us something to hope for as well.

I read some of your other posts as well and it sounds like you have been on a tough journey but I am glad you are fighting it and coping with it.

Wish you all the best as well and thanks for taking the time to reply.

[GrittyReads in reply to djws]

Hi djws,

It is so great that you are being so supportive.

I may be wrong, but I think there are plenty of people who use this site - and who are UK-based - who are taking ocaliva as well as Urso, with great success.

I would contact the 'PBC Foundation' who 'host' this site, on Health Unlocked, for all PBC sufferers wherever they are. There is a link to their site at the top of the page, where you will then find phone and email contacts to talk to their lovely trained advisors. It is a wonderful Group, with much up-to-date info on the site, as well as helpful leaflets and a tri-yearly magazine - plus it is free to join. The group also has fantastic working relations with the UK's leading PBC consultants, who often feature on the site and in the Mag.

Also ... maybe post a specific question on here asking about the use of ocaliva, as I think there were developments in its use recently - I 'think' it's that it should be used in conjunction with Urso and not on its own. But do talk to the PBC F people, they are lovely.

Also, when you talk of 'Dr' do you mean just a regular GP or a liver consultant? If you have any doubts about the current treatment I would ask to see one of the leading PBC consultants, even if it means travelling. My GPs here in Devon were happy for me to do that (and it's still NHS) after a local consultant had given me a dodgy diagnosis.

Hope this helps, and it's great that you are so supportive.

Take care,

Gritty

[gwillistexas in reply to GrittyReads]

GrittyReads...All the info I’ve read on Ocaliva, it can be taken alone for ones who don’t tolerate Urso.

[GrittyReads in reply to gwillistexas]

Hi,

Thanks for that, I've mailed djws, again, to draw his attention to what you say.

I hope you are doing well, thanks for the compliment earlier.

Take care,

Gritty x

[gwillistexas in reply to GrittyReads]

GrittyReads...you’re welcome. As far as Ocaliva, it was first formulated for European countries due to their mortality rate being so high because so many couldn’t tolerate Urso & had nothing else. I keep up with updates because I only take Ocalvia. 😊

[djws in reply to gwillistexas]

As far as I understand it, the plan is for my partner to take both Urso and Ocaliva. The liver consultant said that although there has been no improvement we cant rule out whether or not urso has helped at all (I am guessing the reasoning behind this would be that it could have been worse without the urso) but I must admit, we dont have much confidence in urso.

I am just really praying now that Ocaliva will have a positive effect.

At the moment though we don't know how easy it is to get - the consultant said its a relatively new drug here in the UK and that it might take a while to source it.

[gwillistexas in reply to djws]

djws...it took me about 3 weeks to get Ocaliva. When I was taken off Urso, my dr contacted Interconnect & I had to fill out information to be approved. My dr had to sign & state that I needed it. My prescription comes from a pharmacy in So. Dakota. I have been pleased with results so far. Best wishes.

[gwillistexas in reply to GrittyReads]

GrittyReads...I have downloaded EASL Liver Tree app. Oh my, a wealth of info to be had. I actually got lost trying to get where I wanted to read. 😊

[djws in reply to GrittyReads]

Thanks for posting this reply. I have sent a request to the PBC foundation from myself (My partner has already joined) and I will give them a call on monday as well.

And I will take your advice and post a question specifically about Ocaliva.

Regarding my terminology - yes when I said Dr I meant a liver consultant he has been very helpful so far and has made a point of following our case personally. However the biggest problem is just that we feel like we dont have enough understanding ourselves or the situation - and its that unknown that really worries my partner more.

[djws in reply to GrittyReads]

Just to let you know, I posted a question specifically about Ocaliva as you suggested - healthunlocked.com/pbc-foun...

[Shulsey in reply to djws]

I have seen also where PBC patients are on just the Ocaliva. But I am one who has to take both. Isn't it crazy how so many of us are different with this but the same in many ways. How that made sense lol.

Stay Strong❣️

Shannon

[gwillistexas in reply to Shulsey]

Hi Shulsey...I was thinking about that today. We all have PBC but seems there are so many different ways we are affected. We are a unique medical mystery😅 hodgepodge of symptoms.

[Shulsey in reply to gwillistexas]

True story gwillistexas😊.

[Prettyeyes79]

I am Aldo taking ocaliva and Urso. The dr hoping it will lower my numbers. He also mention if the meds are not working like he wants, after the liver biopsy I probably be on the liver transplant. My liver does not show cirrhosis. Its confusing for me because my liver is healthy but my numbers are not showing it.

Shirley when I reading your post, I look up to you cause you so strong handling this disease yourself. I have my husband who from day one is there to take me to the drs and convince me not to work anymore due to my health.

djws just be there for her. She will have her good days and bad days but as long as she know you there when she need you she will feel at ease.

[Shulsey in reply to Prettyeyes79]

I admit, my health is the main thing that is going to kill my relationship. Sooner than later anyways. I have my family & three very close childhood friends that give me nothing but support. I think it could be his way of dealing with the fact of my being sick & him not being able to fix me. He honestly shouldn't be surprised when I do leave. Because that is looking like my only option. But with my not being able to work & in the middle of a disability case I can't exactly just up & leave. I need some sort of a plan. I know I'll be fine without him, I was good before him. I just don't have the cash lying around to up & go. The good Lord above will direct me. Just waiting on him to tell me when😉.