Consultant telephone appointment

[Shezza123]

Hi I had a telephone appointment over the phone today as of covid 19 not doing face to face appointments. I found it hard to take everything in as quite hard to understand him anyway and being told figures meant nothing to me . Told me to carry on with powders for itching for now . He said my results were improving which I got told last time but it sounded like I’m getting better and once reach certain levels I won’t need medication anymore . Pbc is something I have for life isn’t it ?

[Hidden]

Hi,

I had mine a couple of weeks ago, over the phone. I found it difficult too. Urso is recommended for life, I think you can either take the powder for the itch or not, so perhaps they might trial stopping that, if you feel it’s beneficial though I probably wouldn’t. It’s good to hear your numbers are coming down still though x

[Shezza123 in reply to Hidden]

I told him my itching getting worse but he said just keep taking powders if gets worse can recommend another medication so may phone own doc in few weeks when notes sent over .. have you had pbc for long ?

Sherrie x

[Hidden in reply to Shezza123]

Hi Sherrie, well hopefully the itch will go away a bit for you!

I’ve been diagnosed just over 2 years, I was 33 at diagnosis. The urso doesn’t seem to be working for me so I’m waiting to hear what second medication they will be adding in x

[Shezza123 in reply to Hidden]

The itch is my main symptom drives me mad at times and starting to get tired more now , but thankful not any pain as such . I don’t really understand the figures and what should be and the consultant don’t want see me till another year now which is good but I think long time to go without regular bloods etc and scares me cause can’t see what going on inside .

Sherrie xx

[Hidden in reply to Shezza123]

The itch annoys me at night, how long ago were your diagnosed?

It might help you to ask your Dr for your blood results, namely ALP and Bilirubin, this is what they tend to look at the most to see how your liver is responding to treatment. They like to see your ALP under 200 and bilirubin under 17 (I think!). I got into the habit of asking for both results and inputting them on the PBC foundation app, the PBC foundation tell you it’s important to know your numbers so don’t be afraid to ask, it’s your body so don’t be scared if something hasn’t been explained well to you or you are missing results x

[Shezza123 in reply to Hidden]

I was diagnosed about a year and half ago , thank you for your advice on numbers I didn’t understand that , I think I will get in touch with my doctor in few weeks when got results .. my problem is where I live is a different area to where I see consultant so hospital notes don’t get sent straight to doctor .

Sherrie x

[ninjagirlwebb in reply to Shezza123]

In the future, if you have to do a phone appointment. Can you have the hospital send you a copy of the labs before your phone call. That way you can refer to it during the call.

I am in the US and did a video visit with my hepatologist. I already had my labs done by my primary care doctor & just sent the relevant items electronically to my hepatologist via a patient portal. He wrote back to me the next day with his thoughts.

So then the following week at my video appointment, we just chatted & he asked me general health questions. I asked him a few more specific questions about my labs.

It was okay but I prefer in person appointments. I have to get my labs done again in Sept so I’ll see him then.

Even if you don’t see your consultant, can your GP do labs & just monitor it, so that you know how it is going. A year is too long to go without labs.

Stay Safe & Well,

Haley

[butterflyEi in reply to Shezza123]

I heard Professor Neuburger on the facebook live Thursday afertnoon sessions say that more than 2 sachets a day is okay, I think it was up to 4 sachets a day but you could check that by phone or email direct to the PBC Foundation. I am a long term itcher and rarely get any peace but the worst is controlled with 1 sachet of colestyramine(Questran) before breakfast and one sach after breakfast. I take 300mg Rifampicin twice a day making sure I adhere to the time restriction of food intake for that drug and also take 25mg of sertraline, I occaionally add in Cetirizine when it is particularly bad, in between I use ice or 2% menthol dermacream. PBC is for life and as I understand it unless there is new medical proof otherwise Ursodeoxycholic Acid is a for life. Ask your GP for a copy of the blood test results, it is good to build up an overall picture over a few years.

[HermansMom]

Hello,

I too have had my last 2 consultations by phone. Fortunately my specialist is easy to understand and explains things very well, so I haven't had any problems that way, but I do agree that calls can be challenging. I've never heard of "not needing medication anymore" if he was referencing the Urso, so perhaps he meant the powder for the itch, if that was to improve in time? PBC is a chronic, life time disease that requires treatment for life. The treatment can change over time (i.e. if one does not respond to a medication, if the disease advances, etc.), so monitoring is important.

As far as monitoring goes, because I'm new to PBC, my blood values are being monitored monthly. I've seen others that go longer between, but never as long as a year, so maybe you could follow up with your GP about more frequent monitoring through him/her, with a copy sent to your specialist? My understanding is they generally want to monitor the following:

Albumin

Bilirubin

Alkaline Phosphatase (ALP)

Ideally you want your values to be in the normal reference range or as close as possible. You definitely want to see improvement before treatment began, so you know the medication you are on is working and continues to work over time. Asking for a copy of your bloodwork would provide you with a better understanding of your health. Typically the printout tells you your value and the value range for a healthy person. The normal value range can be calculated very differently, depending on measurements used in your country, so it's hard to ask others what normal values are.

Hope your itch improves.

[ninjagirlwebb in reply to HermansMom]

I see my hepatologist & get labs every 3 months. I think once you stabilize, you don't need monthly labs.