Call to arms...

[PBCRobert]

surveymonkey.co.uk/r/KJZRNM6

Asking you to take part in this survey (if you haven't already done so). This is the last survey this year, but we really REALLY need you to take part.

The more numbers we have, the stronger our voice. If we can say we had 1000 responses, that gives us the statistical edge over a survey with 100 participants. We have had some astounding (and not necessarily in a good way!!) results in other surveys, which show we have much work still to do. We are now looking for more detail so we can camapign on your behalf.

Those with symptoms, those still not on Urso, those struggling to get to a consultant, etc... we need your input.

Those with success stories, we need your input.

We need you. Please help us to make life better for PBC patients, now and forever.

Please,

Robert.

[Kate50]

Survey done x

[Jo_Br]

Can this be passed to the PBC Facebook groups for any PBC Foundation members who may not come here as often PBCRobert or do you prefer it left here?

[PBCRobert Partner in reply to Jo_Br]

Feel free to share, thank you.

[LindaVillanova]

Done

[Rockie]

PBC Robert I live in South Africa and here very little is done for PBC sufferers. Ursotan Discovery Health has declined to assist me with the costs after all necessary motivational information has been sent to them. They are only prepared to pay for liver transplant. I have more autoimmune diseases. Very costly disease for pensioner.

[PBCRobert Partner in reply to Rockie]

Rockie,

Thank you for your comments. I would love to be able to help.

Please contact me directly and let's see who we can harrass, I mean erm speak to to try and improve things.

Yours,

Robert.

[Rockie in reply to PBCRobert]

Robert. Your concern is much appreciated. I at last, after 8 years managed to get the Medical Aid to put me on Chronic for PBC and they agreed to Ursofalk in stead of the prescribed Ursotan. Will see if I will have the same affect .May be, just may be, I will itch less!!

During the years my readings came down quite a lot. Thanks for caring and offering assistance, much appreciated. I have learned a lot since being on this Foundation.

[PBCRobert Partner in reply to Rockie]

Thanks, Rockie.

You are most welcome.

In terms of the itch, the first line therapy in the UK is something called cholestyramine. When taking it, take one just before and just after breakfast. Statistically, it is very successful in reducing itch (for all it takes a few weeks to kick in fully).

Urso is used to slow down the progress of damage with PBC. Response to Urso is linked to normal life expectancy (in really simple terms).

The last thing I wanted to say is that this site is just one of the services provided by the Foundation. If you are using this, but ae not actually registered with the Foundation then you are missing out on a huge source of information and support.

You can register here for free:

pbcfoundation.org.uk/existi...

Yours, as ever,

Robert.

[Rockie in reply to PBCRobert]

PBC Robert. Thank you for the valuable advice. I thought I was already registered, but will check it out. In this lonely world of living with PBC it is very encouraging to be part of this Group. Much appreciated what you people do for us.

[Rockie in reply to Rockie]

Robert. Please I need advice again. Have been using Ursotan 600mg p.d. for 8 years. Discovery Health declined to put it on Chronic Medication List. Now my Specialist has managed to get them to approve Ursofalk 250mg (I take 3, my body weight is 60kg. (I live in South Africa) The changeover is a very itchy one. I have never ever itched so much. Could Ursofalk have this affect on me. Must I endure this until my body accepts this capsule, or could I be allergic to the capsule. Really after 8 years the itch is at its peak. Must also mention my last blood results were the lowest ever. Before taking Ursofalk. I even lowered the daily intake of Ursofalk and slowly building it up to full dose of 750mg p.d. but it is very bad the itch. Please any suggestion?

[PBCRobert Partner in reply to Rockie]

Hi, Rockie.

I don't really know the answes: time will tell.

There are itch medications available (for all I don't know specifically in RSA). The itch may be coincidental to the change, or it could be caused by the change.

What I can say for now, is try to deflect the mind and keep your skin cool.

Feel free to PM me and we can speak more specifically.

Yours,

Robert.

[Rockie in reply to PBCRobert]

Robert. Thank you so much for caring and replying. I think my body is accepting the Ursofalk now, as the itch is not so intense anymore. I have lived with the itch for more than 8 years and it was just unbearable after starting new Ursofalk. I try and not take medication for itch as it puts extra strain on liver. Thanks so much for always being there for us

[Sachin1234 in reply to Rockie]

🙏

[Hidden]

Survey completed ✅

[Jo_Br]

Bumping again to get this filled, PBC Foundation needs a large voice which is definitely us, and just from my rants, moans and musings here we definitely need a larger say in patient care.

PBCRobert thanks for allowing the sharing of said survey, you may have seen a small spike of about 30 odd at least in the last two days, is there a need for getting those numbers up higher, still places I can share if so?

Maybe other HealthUnlocked members have groups or PBC friends who do not always come here that they could pass the survey to?

[PBCRobert Partner in reply to Jo_Br]

Thanks, Jo.

Yes, it has spiked. Interestingly, some people who haven't registered with the Foundation are replying. Hopefully, this will inspire them to join and they can get regular information, access to videos, webinars, etc all for free.

[Ottley3 in reply to PBCRobert]

Thank you. I am in the US and have not been able to join online for some reason. I'll keep trying. Thanks for all you do.

[IAmTheGlue]

Survey completed

[gwillistexas]

Done✅