South African: I live in Johannesburg, South... - PBC Foundation

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South African

TaylorMatthew profile image
6 Replies

I live in Johannesburg, South Africa. 59 year old female and diagnosed with PBC about 5 years ago, but had elevated nearly 10 years prior to diagnosis.

Liver enzymes have been normal since using Ursotan. Just very expensive here in South Africa.

I have Sjogrens as well.

I have itching and of course dry mouth. Hair loss for years too and it seems to just get thinner. Back pain and pain above my left hip. Otherwise I feel healthy.

Regards

Sandy

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TaylorMatthew profile image
TaylorMatthew
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6 Replies
butterflyEi profile image
butterflyEi

Hi TaylorMatthew

just stopping by to say welcome to the forum, great bunch of people on here. glad to read that overall you are feeling healthy.

best wishes

TaylorMatthew profile image
TaylorMatthew in reply tobutterflyEi

Hi there

Thank you for the welcome.

Have been visiting this site for a while now and don't feel I am completely on my own in this.

Will keep reading everyones comments.

Skypony profile image
Skypony

Hi Sandy, welcome!

I hope you'll find much comfort and support on this excellent forum. Many of us have the PBC/Sjogrens combination, so if you have questions and it's a while till your next doctor appt. you can float them here, and someone will try to help.

Sounds like you've done well on Urso, that's great. Recently we were debating whether hair loss is PBC or just getting older! Do you know the cause of your back and above hip pain? It's good to know your bone health so you can look after yourself well.

Best wishes.

TaylorMatthew profile image
TaylorMatthew in reply toSkypony

Hi and thank you for taking the time to drop me a line. Much appreciated.

I have spoken to my Rheumatologist but he just says its old age creeping in! My Bone Density scans I have every 3 years are fine. I do moderate exercise but the pain is worsened by this.

My loss of hair has been the worst to deal with. Can't get my head around it at all and miss the thick hair that I used to have.

Go well and thanks again.

Regards

Sandy

daleen profile image
daleen

Hi Sandy. Welcome to the group. Ex South African (Pretoria). We've been living in New Zealand for the last 10 years. We are very fortuanate that Ursosan is 100% government funded. I'v been diagnosed with PBC last year Oct but had been itching for more than a year. My liver enzymes improved signaficantly since taking Ursosan. I'm also taking Bezalip which took the itchiness away. Have a brilliant specialist who is spot on and knows what he is doing. I'm fortuanate having him as a specialist. I'm glad you're doing so well. Take care.

TaylorMatthew profile image
TaylorMatthew

Hi Daleen

Thanks for dropping me a line and I hope that you are happy in NZ.

South Africa has a lot going on!

I have written down the medication for the itchiness and i will see if it is available in South Africa. That's interesting that it has taken away your itching. I find as we get into Winter the itching does ease until the Sunmer months start again. The itching is awful!

We do not have a Fibroscan in Johannesburg. I don't know why they are so behind in certain things. I am very interested to find out if I have perhaps advanced to the next stage of PBC. I hope not! Diagnosed Stage 1

5 years ago.

Keep well and thank you for taking time out of your day to drop me a line.

Regards

Sandy

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