New PBC App

[PBCRobert]

Delighted to let you know the newest new version is out.

A few nice additions, some improvements, easier log in and registration.

Be part of the community voice!! Take part in our surveys and make sure your voice is heard. Already patients in 22 countries adding their voice to the collective.

Learn a tonne of stuff about PBC. Read the latest guidelines, etc.

Track your symptoms daily. Also track your test results as you need to. Not just your PBC tests but things like thyroid, cholesterol, etc.

ALL FOR FREE.

Available at both google and apple stores. You know you want to...

[AdeleMalcolm]

Thanks Robert. I am pleased that I can now go in and input my tests as it was an issue on my android 'phone. Can I make a suggestion though that you enable test results to be typed in as opposed to on a sliding scale or in addition to that as an option. I have a slight tremor so it makes it difficult to get an accurate reading input. Thanks again for all the good work on the app. It is very useful.

[PBCRobert Partner in reply to AdeleMalcolm]

That is great feedback, thank you.

Let me see what the tech guys tell us.

[AdeleMalcolm in reply to PBCRobert]

I have also found some tests I can't put in because the g/L, iu/L etc are different from what I've been given and I don't know how to convert e.g. white blood cell count. It's not a big issue as the key tests are all there and consistent with what comes back from my test results. Thanks again.

[PBCRobert Partner in reply to AdeleMalcolm]

Do let us know specifics and we can address that (easier than the other thing)

[AdeleMalcolm in reply to PBCRobert]

The app shows White Cell Count (cells/cubicmm or microlitre) my test results come back as (a weird one) 10*9/L with a normal range of 4.00 - 11.00. Maybe a totally different thing! You might mention that if you have to move the slider along quite far to the right it sits over the results box so you can't actually see what you're inputting until it's done and then it's not easy to get the correct reading in. I found it when I was accidentally putting a test result into the wrong box! Thanks.

[PBCRobert Partner in reply to AdeleMalcolm]

Again, really helpful feedback. Thank you.

I need to have a closer look at the android version.

Do remember to fill in the surveys, too.

[AdeleMalcolm in reply to AdeleMalcolm]

Also Bilirubin - app quotes micromol/L, my results are umol/L - haven't a clue if these are the same thing or not but I know my results are right at the bottom of the scale whilst being within the normal range which (according to my results) is <21

[AdeleMalcolm in reply to AdeleMalcolm]

Robert, if I find other glitches would you prefer I just send details direct rather than through HU?? Thanks. Adele

[PBCRobert Partner in reply to AdeleMalcolm]

umol are micromol.

In certain circumstances, bilirubin can jump to many figures so we need to all ow for that.

In the compendium section, you will see the “normal” ranges for the liver tests.

[Hidden in reply to PBCRobert]

PBCRobert - I have peripheral neuropathy. It reduces the effectiveness of contact between the fingertips and device. I have the same problem with hob and cooker controls and thought it was due to not pressing hard enough, but it isn't! The slides on the app are difficult for me too.

[Hidden]

PBCRobert - thank you for this update. Totally unrelated, but just had e-mail from HU inviting to diarise how PBC affects me over ?8week period. A fee is offered for participation. The e-mail doesn't mention our PBC Foundation. Please can you say, what if anything do you know about this "invitation"?

[PBCRobert Partner]

We know absolutely nothing about this. Which is somewhat unusual given we are the biggest PBC group here by some 7000 people.

Please be careful.

Robert.

[Hidden in reply to PBCRobert]

PBCRobert - I guessed as much. I wasn't impressed. To say the least, not a lot of thought went into the "invitation"? I wonder how many others on this site have been targets?

[Kate50 in reply to PBCRobert]

I was also invited onto this survey, appeared as a pop up

[PBCRobert Partner in reply to Kate50]

Sorry to hear that.

Let us investigate. I imagine somebody somewhere wants to make money from you and your data.

All the more reason to use the app and be part of the International PBC registry: for patients by patients.

[Kate50 in reply to PBCRobert]

I can forward the email if you tell me how

[PBCRobert Partner in reply to Kate50]

I don’t know. Copy and paste?

[e-mail]

[Kate50 in reply to PBCRobert]

I have forwarded it to your email from the email I received but I also got a pop up a few days before the email

[Kate50 in reply to Kate50]

I think it was 70 or 80 pound that was offered, I just didn’t think I was suitable because I have had a transplant or I probably would have joined it 😱😱

[Hidden in reply to Kate50]

Kate50- are those little icons/emojis on your phone or laptop? I can't find them on my laptop, and I can't see them properly. They look like someone mooning, but it may be someone hands clasped to mouth in horror as that seems to fit better. I doubt anyone would want my daily notes... I definitely don't know the way round a keyboard. I hope you are doing well?

[Kate50 in reply to Hidden]

Hi, sorry they are emojis, dangers of living with 3 teenagers, I use an iPad and iPhone and they are on the keyboard (a little smiley face emoji) press that and all the emojis come up, and you were right they are hands clasped to face in horror, xx

[Candy12 in reply to PBCRobert]

I had an invite from HU, same thing I expect I can’t say it offered money though. To be honest I never read it fully I just deleted it.

[alhw in reply to PBCRobert]

It’s 8 days, morning and evening. The questions are the same as the Intercept questionnaires on the OCA trial

[hettie01 in reply to alhw]

Oh...I completed this survey as thought it come from pbc site???yes over 8 days and I did receive a evocher for Amazon...it was the same questions I was asked when I did a clinical trial I’m worried now weather I should of done it???

[hettie01 in reply to hettie01]

[e-mail]

[hettie01 in reply to hettie01]

This is who corresponded with me

[Hidden in reply to Kate50]

Kate50 - it came directly as e-mail to me. (Actually, I don't notice pop-ups, so perhaps that too).

I support the PBC Foundation because it TRULY supports me among all of its members.

I don't know of any organisation that actually does so to the same standard, do you?

[Hidden]

PBCRobert - I forwarded the e-mail to PBCF and asked for it to be sent to you as you were neither consulted nor invited!

[PBCRobert Partner]

We got them, thank you

[Pamela4475]

What’s the app called?

[PBCRobert Partner in reply to Pamela4475]

PBC Foundation self-management app.

[Pamela4475 in reply to PBCRobert]

Got it ❤️

[PBCRobert Partner]

PBC Foundation self-management app.

Whoops!! Should have said that in the first place!!

[kiwivivr]

I have downloaded this one fresh but now it says my email is not found. ho can i get to use this.

I tried the "Forgot password" and it says "email not found".

[PBCRobert Partner in reply to kiwivivr]

Email me directly. [e-mail]

I will be able to look at it in a few hours.

Robert.

[Sona_akb]

Dear Robert PBCRobert thanks for this update 🙏🏻

Does previous user and pass usable for new app?

[PBCRobert Partner in reply to Sona_akb]

Yes. Absolutely.

[1155Cat]

What is the name of the new PBC app ??

[PBCRobert Partner in reply to 1155Cat]

PBC Foundation self-management app

[hettie01]

Hi is it the health locked app because thats whats coming up? I carnt see anything about checking results? Thanks

[PBCRobert Partner in reply to hettie01]

You need to go to either the apple app store or the google app store. Then search “PBC Foundation self-management app”.

Any problems, contact me directly.

Robert.

[hettie01]

Hi thank you all done look forward to browsing

[Parabola]

Hmmmm, I also received the invite from Calvin@ healthunlocked re: the 8 day survey/ journal. It offered an Amazon voucher. In fact, I found the survey when I came to this site + each & everytime I complete the survey I am redirected to this site. It seems highly unusual to me that you have no knowledge of this survey. I began the survey based on the fact that it appeared to be from a reputable site. Mind you, I was also confused by the whole section that this site is not the PBC Foundation. I see mention of the fact that PBC Foundation sponsors this site. Greater transparency & clarity would be greatly appreciated!

[PBCRobert Partner in reply to Parabola]

Thank you for your comments.

I am not saying this is not a reputable site. What I am saying is the emails did not come from me and I know nothing about it.

Whilst the PBC Foundation works hard to provide and moderate this space, it is owned and run by Health Unlocked.

This is why we regularly say you need to register with the Foundation to access our services (all for free).

We are still trying to get to the bottom of the survey stuff. We shall keep you posted.

Thanks again,

Robert.

[Parabola in reply to PBCRobert]

Thanks, Robert. I did a Google query re: premarin + Urso interactions which directed me to the Healthunlocked / PBC Foundation site, where a survey showed up as an overlay asking if I was interested in doing a survey. I am pretty tech savvy & looked at this site and believed it to be reputable so I signed up for the survey. I recently underwent a desensitization protocol for an anaphylactic allergy to URSO & the effects post desensitization have been just short of nightmarish! Extreme itching, pronounced fatigue and increased allergic response to many stimuli put my body into a state of overload. I was eager to share my experience with any outlet, be it a patient run advocacy group or drug company, because my journey has been arduous with limited communication from my personal Hepatologist who remains highly regarded in the field. I have found that I have been left with so little information that I had to become a "lay Hepatologist!".

I thoroughly vet my resource information in an effort to avoid the rabbit warrens of misinformation which abounds. I was surprised to happen upon this post + the other post re: This is not the PBC Foundation. I am glad that I have ultimately discovered these facts, however, it is NOT abundantly clear to the user.

I take no issue with this site or PBC Foundation. ANYTHING, anything at all, which helps those of us with this complex auto immune disorder navigate our own experience and the various medical systems, is greatly appreciated.

Personally, I have come across much conflicting information re: drug management. I have been on URSO (taken off due to potential anaphylaxis), off label use of Bezafibrate (taken off due to hepatitoxicity),& Ocaliva; all within a short span of 2 years and my disease has progressed rapidly. It has been a daunting journey... not to speak of the psychological / socialogcal component of a disease that alters one's life considerably! Merely educating folks on the fact that because "I look good doesn't mean I am good" can be an exhausting enterprise. Discovering misinformation in clinical notes about me has become almost laughable. I have yet to read ONE clinical note that hasn't gotten at least one salient fact wrong. Right down to being listed at a weight 40Ibs greater than I have ever weighed (important for drugs that are prescribed based on weight). I have reached a point of such fatigue both on the physical level & on the emotional level, I don't even bother to correct many of the glaring errors. Why take a patient history if salient facts are inaccurately recorded?! I realize we are all human & prone to mistakes.

Becoming expert at advocating on behalf of one's own personal health journey can become a full time task! My limited energy has Been sucked dry from the revolving cycle of the numerous specialists & other appointments which I now attend. My own research enabled me to diagnose another rare auto immune disorder which I have... where my medical resource team failed to make a connection! It was a condition which caused great pain & discomfort which I suffered for well over a year!

I have great empathy for those who are on the PBC medical journey. It is a mine field!

Thanks