PBC or PSC ?

[jennyspringer]

After 9 years of being told I have PBC I visited the consultant today and he says hes not sure that it could be Primary Sclerosing Cholangitis, Now lined up for more blood tests and MRI scan, just feel so down now I need to find out all about PSC just feel that I am back to square one not knowing whats happening to my body.

[Lisacj]

So sorry to hear you are being bashed around. Spending 9 years getting used to PBC and now being told it may be PSC.. Must be so hard. They sound so similar, I really hope either way you know which way you and your health are heading, it is the only way to cope, I really do wish you well, please let us know how it turns out XX

[jennyspringer]

Hi Lisacj thanks for your thoughts, I dont usually blog but was so angry when I came back, the only good thing is that both respond better to urso.

Thanks again x

[Hidden]

HI

So sorry, you must be very confused and fed up, 9 years seems like a long time. I hope the Urso is helping you and I am sure the scan will help with determining the condition.

Both auto immune conditions that effect the liver bile ducts - I describe it as the Trunks and the Branches - PBC is the little branches in the liver and PSC is the trunks into and out of the liver.

PBC is more likely to effect women, whereas PSC is men and at a younger age, maybe that is why they have always thought you had PBC

My brother has PSC, diagnosed when he was 32, he is 50 now ( transplant 4 years ago). I have PBC, diagnosed 2 years ago, I am 51.

Symptoms are very almost identical - as the effect it has on the body is similar.

Off to my PBC review appointment now.....

Good luck

Lou

[jennyspringer in reply to Hidden]

thank you Louf your comments were very informative and put so easily to understand.

The consultant did tell me that it was predominantly a male disease. The consultant that i now see is not the one who made the original diagnosis but following me bombarding him with questions yesterday he went through my notes and hence decided that the condition needed further investigation. I do present with the itching, fatigue and joint pain, and really stupid lft, but really after 9 years there is not a great deal of change and he said he would have expected more. I have only been taking URSO for 2 months as I tried it about 4 years and could not tolerate it, thuis time we have introduced it slowly as yet I have not noticed any difference but hopefully it will sort itself out.

I hope that your review went well.

Keep safe and well

[Hidden in reply to jennyspringer]

Hi

You are welcome, I feel I know the liver well now...

All sounds a bit of a mystery, glad they are doing further investigations. Hope the Urso works this time, I take the tablets as could not get on with the capsules.

Review went well, seen on time, in and out in 10 minutes, bloods all fine, a bit high but only slightly, except bilirubin, which for some reason sticks around 32, Consultant thinks it is because I have Gilberts syndrome.... which is genetic (dad has it). And vit D a bit low, so need some sun ;).

Take care

Lou

[Kaywal]

HI Jennyspringer - I'd be interested to know if you've had a liver biopsy?

[jennyspringer in reply to Kaywal]

Hi Kaywal, I am in the UK and they tend not to do biopsies but work on blood results.

[judyt]

I have a sister-in-law who has PSC. Has had it for many years and to tell the truth she is in better shape than me. It is true that I also have Scleroderma, Sjogrens and PBC but she is on Prednisolone as well as something else which I have never asked about (very likely Urso I guess). She does have Fibromyalgia from time to time which I am thankful not to have. My opinionis that it is a waste of valuable energy to get too upset about it all so I just try to go with the flow. The 3 Autoimmune issues I have each come with their own problems and as well I have Rheumatic Heart Disease. As long as each of the issues is being monitored and I do what I can to ease them what else is there to do?

Best wishes to you and try not to stress too much, that will not help at all.

[jennyspringer]

hi judyt

Thank you for your response, I blogged out of sheer frustration and now 2 days on have calmed down. You are veary \corrEct stressing doesnt help matters.

I hope that both you and your sister in law keep well and safe.