Looking for any South Africans with PBC

[SANDYTaylor]

Hi there

I am interested in contacting anyone residing in South Africa to hear about their PBC journey. I am female, 57 years old and diagnosed 4 years ago.

[Lekkerbek]

Hi Sandy

My name is Linda, 57 in couple of months, I am from South Africa, but live in New Zealand now. I didn't know anything about PBC or that there was a sickness like that. When we came to NZ and I had to do the medical to get a work visa, they picked up that my blood count was high, but since I had a viral infection, they gave me a work visa. 2 years later, my blood count was even higher and after several tests and a liver biopsy, I found out that I had PBC, AMA & ANA positive ( not even sure what that means, stage 2. I now use the URSO tablets and my blood counts have come down. Are you still in s.africa?

[SANDYTaylor in reply to Lekkerbek]

Hi Linda

Thank you for replying.

What I want to ask you is there any member of your family that also has PBC and what other Auto Immune diseases you may have with the PBC. Were you well in your childhood and what do you think may have contributed to you getting PBC? How do you feel in Stage 2?

Looking forward to hearing from you and hope that you are settled in New Zealand.

Regards

Sandy

[Lekkerbek in reply to SANDYTaylor]

Well, my mother passed away because of liver cancer, which I now realize was actually the final stages of PBC. All the symptoms she had, but they didn't know better. She had no medical aid, so relied on government hospitals ect. My sister died of Lupus, which is also an auto ammune decease. I have no idea how it started, but I have had symptoms for a very long time and if I still lived in s.a, I still wouldn't have had any treatment. Do you take any medication now? How did the Drs get to diagnose you? The worst thing for me at this stage is the tiredness, joint pains, loss of muscles tone and extreme dryness. I work full time and many times after work, I just cry from the extreme tiredness. How are you feeling? What stage are you in and what is the worst thing for you?

[SANDYTaylor]

Oh I am very sorry to hear that you lost your mom and sister to autoimmune diseases.

About 16 years ago I had a full medical and I had high liver enzymes then with high kidney and blood readings. I monitored bloods for a decade or more but my GP did not send me to a specialist. Eventually when I went to see Prof Song at Donald Gordon, johannesburg my liver results were shooting through the roof!...I should have received treatment far earlier than I did but the GP thought it was nothing!

I had a liver biopsy. It was terrible. It was very traumatic and he diagnosed me at Stage 1 with no damage to the Liver. Up until then, I had no liver symptoms except for some mild itching in certain areas of my body. The itching has progressed and spread and is a nuisance but manageable.

I am on a lot of medication for the autoimmune conditions and Ursotan for PBC. The Urso is very expensive in SA and cost R1600 for a months supply.

My mom and dad are still alive and I have 4 sisters over 55 and a brother, that are all healthy. Lucky me!!!!!!!

My energy levels have dropped as I can feel it on my walks and my strength has gone but I feel well. I have very sore knee joints and feel it walking up and down stairs and chronic back pain for years and years.

Like you, dry all over my body, dry eyes, no tears, little saliva and lots of hairloss over the years.

Growing up I had strange feelings of illness and in my early 20's I had a general feeling of being unwell. In my 40's I got really ill and lost a tremendous amount of weight. I suspect I started having a liver problem then. I looked terrible and had some pale stools at the time.

I have autoimmune thyroid disease and sjogrens.

Other then that's life is good. I stopped work in April this year. Taking a short break and will go back to teaching next year.

Regards and keep well

Sandy

[SANDYTaylor]

P.S My liver results have been normal since starting Ursotan for the PBC

[masc0t]

I am from South Africa, came to the UK in 1998. I was diagnosed 3 years ago. I am 47 yrs old. I have another autoimmune disease, Lichen Sclerosis as well as Asthma.

I suspect I have Sjogrens - I have been prescribed a mouth spray and I use Hypermellose eye drops daily - but I am reluctant to have more tests. I've recently taken part in a really intense Clinical Trial and can't really face tests & more bad news. I think I'm starting menopause and having blood tests next week to confirm. I have mild symptoms, but attend clinic every three months for check ups. The NHS covers everything and my care has been first class. I've had an ultrasound, biopsy and Fibroscan when I was being diagnosed and I agree with Sandy as to how traumatic the biopsy was. I believe that they're going to use Fibroscans more for diagnosis and less of the biopsies.

During the 90s while living in South Africa, I was bitten by a tick and although the blood tests were inconclusive, I believe that I had Billiary (Tick Bite Fever). I was treated for it and I believe that either the Billiary or the treatment could have cause my PBC and I'd be interested in what the other South Africans think.

None of my relatives have shown any signs of PBC. I don't have children.

Regards, mg

[SANDYTaylor in reply to masc0t]

Hello

Thank you for getting in contact with me.

You are fortunate that the NHS takes care of your health. Retirement for me is just around the corner and I wonder if I will be able to afford the treatment in my advanced years. A very scary though indeed!

Yes, we all seem to suffer from some other autoimmune illness alongside the PBC.

The million dollar question we all ask is of course, "how did I get this horrible condition!"... I wish we had more answers!

Best regards

Sandy

[uitlander]

Hi Sandy and perhaps Lekkerbek and masc0t,

I was born and lived in Johannesburg until 1994 and then have been in the UK. I am 66. I had always thought I would go back to live in SA once I retired but PBC has pushed that aside partly as I could not get myself sorted and have enough go to move (even now with medication) and partly knowing that I would not get onto a medical aid and couldn't afford care

Diagnosis with PBC 4 years ago cos of excessive tiredness leading to my having to retire early. I had gone to GP when the pain (flitting from joint to joint was markedly affecting life and the GP (one tends in UK to see different ones often) did blood tests - the liver function was abnormal but they just kept monitoring it for about 2 years until work actually forced the issue because they were really concerned in the deterioration . The result was further investigation - anti depressants, pain relief and a name.

About 18 months ago through info from PBC foundation I contacted Newcastle and was included in the trails run by them for Rutiximab and whether it helps the fatigue.

No members of my family had PBC. No issues in childhood and no liver illnesses etc. In fact normal health and I found PBC gradually hit so that one didn't fully realise how one was deteriorating.

My two daughters so far are showing no sign of PBC although my youngest had severe ME (chronic fatigue syndrome) from age 10 to 19. I knew my tiredness was different to the ME type of tiredness- it is hard to explain why but I think with PBC you go and you hit a wall ( for me on something like standing it's in minutes)so the kick back from activity is immediate while often with my daughter once she was past the severe stage the kick back of going beyond her bodies limit occurred 24-48hrs later . Recovery from fatigue is equally slow in both

In some ways I feel I would have been identified earlier if I had been in SA as we had a superb GP but whether I could have afford the medication is a different aspect

I had just gone onto Urso and it has changed things markedly. (the GP I had seen at point of diagnosis didn't believe in it) I am not nearly so tired But even now do tire faster than my peer group so often feel I have more in common with 80 yr olds.

I have always found when I am back home ( yes SA is still home and is where my eldest lives) the pain is much less and I don't tire as quickly. I have gradually worked out that both Temperature and Humidity affect me and it was only in talking to friends with rheumatoid arthritis I discovered that it probably wasn't my imagination as they find humidity is a factor. The itch is much less in SA cos of sun. the dry eyes is about the same and I carry little sachets of special saline solution to use for my eyes.

It is so lovely being in contact with other South Africans.

take care

Marianne

[SANDYTaylor in reply to uitlander]

Hi Marianne

Thank you for your in depth reply. Would you mind telling me what Stage of PBC your are in right now. Do you itch?

Yes you are right! ...Living in South Africa is very expensive. Medical care and pharmaceuticals are so costly here.

Regards

Sandy

[uitlander in reply to SANDYTaylor]

Hi Sandy,

The doctors here don't seem to be that worried about stages and the reading I did revealed that liver biopsy can show different stages if taken from different areas of the same liver.

Other than bruising easily I don't show the more advanced symptoms - although I have had a period (during and following a viral infection picked up in JHB last November of increased blood tests the frequency depending on the results and in the beginning it was weekly)- I am now on monthly blood tests but if ok over the next 2 it will drop to 3 monthly.

Being part of a trial cohort one feels that they are really alert to your health.

I next go up to Newcastle for monitoring by the liver specialists in December (6 months after previous check) with plan that if all is well it will shift to annual monitoring by them with monitoring in between locally.

Have you had a dexa scan - they do that here to check that you are not developing osteoporosis?

I know Fourways well - used to ride across it on horseback before any horses were built.

take care

have a great day

Marianne

[SANDYTaylor in reply to uitlander]

Hi Marianne

Fourways has not changed much except for the houses and shopping centres always going up in this part of johannesburg. It seems to get more and more crowded in this northern area, and of course the traffic is terrible.There are still horses around and the area is called Chartwell. In fact if I got in my car now I could drive there in 8 minutes.

I have a bone density scan done every 5 years or so. It's so important just to keep up with our health checks.

Regards and stay healthy

Sandy

[Rockie]

SANDYTaylor. Hi! At last I found someone in South Africa with PBC. I live in Alberton and it is now 9 years since I was diagnosed with this rare disease that no one knows about, even some doctors. Let me know where you live. Greetings

[SANDYTaylor in reply to Rockie]

Hi Rockie

YAY!....At last a fellow South African PBC person, and living in Johannesburg too! :)...

I live in Fourways.

Maybe you can tell me about your diagnosis and the doctor you see for your checks.

Are you on Ursotan?

[Rockie]

Hi SANDYTaylor. I did send you an email some time ago. Let me know if you got it. Nice to be able to know there is another PBC friend close by. Our medications are different from the overseas patients. I am on Ursotan. Yes, you right, it is costing a fortune and Discovery is not paying for it. Let me know how you are. Greetings

[SANDYTaylor in reply to Rockie]

Hi Rockie

I did not receive your email. Do you want to email me on [e-mail] . I'm interested to know who is looking after your liver and all those other important questions. Please drop me a line.

Thanks

SANDY