Waiting diagnosis pain

[Buttsy]

hi new here,

I wonder if anyone can help ,my Dr is referring me to the specialist for test because I have had protein and Biliburin in my urine for about a month now and my ANA came back positive for Centromere antibodies.I have been on medication for UTI to. I am currently getting pain in my right side back and front under rib cage which is pretty much there all the time. I have been advised it may be Gallstones or Liver problems.I have had an ultrasound last week and nothing showed up on that.next week I am having blood test done and then wait on my referral.My problem is we are booked to go away on Wednesday next week and I am concerned about if things will progress rapidly,or if travelling will make it worse if it is PBC.also what pain relief is best to use so I don’t make any of these symptoms worse. Any advise or information would be appreciated.I had the Centromere result <8 last June and these symptoms I have had about a month.

[Chris21]

hi buttsy, its difficult to answer your concerns as most would only know the answer to their own diagnosis. For instance I had no idea I had PBC until I had blood test and the GP was very concerned. I was told the usual, yellowing of the eyes, skin, tiredness etc. I also have other auto immune diseases ( which also causes lot of urine infection) I would speak to the GP of concerns about going on holiday as they would be able to give you guidance on what to do/avoid. Hope you enjoy your holday 🙂

[Buttsy in reply to Chris21]

Thank you Chris,

I have blood tomorrow at Dr , I will enquire then but that is with the nurse, so not sure how much knowledge they will have .

👍

[Chris21 in reply to Buttsy]

hopefully if they don’t know that can ask the GP 🤞

[butterflyEi]

Hi Buttsy

Firstly can I point you in the direction of the PBC Foundation, they have a helpline if you want to speak to one of their trained staff. pbcfoundation.org.uk/

PBC is a slow progressive disease therefore it should not be a problem for you travelling, have you arranged travel insurance? PBC will put up your premiums but until you have a formal diagnosis of PBC (if that is the diagnosis after seeing a specialist) there is little point in telling the insurance company unless you want to.

The general advice for pain is half the dose for the general population of paracetamol in a 24 hour period. However if the doctor says it is safe for you over a short period to have the normal dose then it is okay to follow their advice. You may find a warm hot water bottle over the area helps soothe this discomfort.

With UTIs increase the amount of water you are drinking, unsweetened cranberry juice and probiotics may help in addition to the prescription from the doctor.

I see from your answer to Chris21 that you will have a blood draw tomorrow with the nurse. It is unlikely that the nurse will have much knowledge of PBC unless she has personal experiences to share, PBC falls into the rare/uncommon range of auto immune diseases. It may be best to ask for a telephone consultation/appointment with the doctor to get best advice.

Not sure how long your holiday will be but if it is only 7-14 days I cannot personally see any reason for you to worry but I do not know your personal case nor am I medically trained, just had PBC a long while so best speak to the doctor.

Good luck, enjoy your holiday

[Buttsy]

Hi Butterfly Ei,

Thank you, so much for your response that is a reassuring answer , I use a hot water bottle and that is something I find eases it.My holiday is only for 6 days so I feel if it’s slow progression ,I should be okay. I will take as low a dose, as possible of paracetamol . See what the nurse or Doctor advise Tomorrow. Thanks for the pointer to the PCB foundation too.

Advice appreciated 🙂

[gwillistexas]

when my dr did the ANA Cascade, my Centromere B was high but I’ve not had protein nor bilirubin in my urine.