Hello everyone. I was diagnosed with PBC 2 years ago. I am fortunate in that I have responded well to URSO and my latest blood test results are within normal ranges
I have my first hospital appointment since diagnosis and initial telephone follow-up next week and would appreciate advice on how to get the best out of it. What questions to ask etc. Up until now I have just had regular blood tests through my GP surgery. I had an Ultrasound before diagnosis which was normal but have not had a Fibroscan.
Any advice would be appreciated. Thank you.
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pixiejojo
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first of all...Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. If you are new to your diagnosis, first of all, take a breath. It’s ok. We all, myself included, have been exactly where you are right now…. scared, unsure, mad, sad, and so much more. Stop googling for information - get your info mainly from The PBC Foundation (pbcfoundation.org.uk). It would be so beneficial for you to join The Foundation as well - it’s free to do so.Their website has so much to offer someone who is just diagnosed as well as the person who has had PBC for many years.. Some other great resources are the Mayo and Cleveland Clinics, American Liver Foundation, and The Canadian PBC Society. Even though I live in the US, obviously many of our members live not only in the UK but around the world. Remember that every one of us has PBC differently from any other person in the group. Always be patient and kind to yourself. It takes everyone time for it all to become a reality. It’s natural to often feel we are no longer the person we once were. Never feel alone! Urso is a must drug to take. It has been proven to be the first line treatment for PBC. Take one day at a time. We are all in this together. The more you learn from these reputable sources then the more informed you are of the care you should be getting and deserve. No one should feel they have no one to turn to, even if it’s to vent. Feel free to ask questions here. By sharing, we all benefit. Don’t hesitate to ask others for similar experiences. Everyone here is always willing to lend an ear or give a kind word. We all learn from each other. Remember to take that breath……
It's always best to take someone with you for another pair of ears so to speak. Write down what you want to ask..... how often do I lab work done? what side effects should I expect - if any? how often have you treated someone who has PBC? (this is so important to know) Most primary and GI docs do not know much about it. Not enough to care for someone long term. This is definitely a long term relationship between you and your doctor. Is there any special foods I should avoid? Eating healthy and exercising as you are able is so important too. Most people have no trouble tolerating Urso. Sounds like you are doing well on it. What is your alk phos numbers now.... what number did you start at when you were diagnosed?
If I can think of other questions, I will post them. Ask any questions here anytime.
This is a general list of questions.. some are not applicable to you, I'm sure. About the Urso dosage. This is so important. The dose of Urso is ALWAYS only based on your body weight - never lab results or symptoms. If you need to work yourself up to the full dose (many do) then just take some of the medication daily for a few weeks and then add to it. The dosage is 13-15 mgs/kg of body weight. Taking the right dose optimizes the best effect from the Urso.
How often do I need labs drawn?
Can I take OTC supplements/vitamins?
Can I get pregnant?
Do I need to follow a special diet?
What medication can I take for the fatigue?
How many patients have you treated with PBC?
Can I color my hair/nails?
Is it hereditary?
Does everyone take Urso? How is it dosed?
What side effects can I expect from Urso?
How will we know if the Urso is working or not?
Will I always take medicine?
What do you suggest to help the itching?
How is any forgetfulness/brain fog related to PBC?
What can I do to help the fatigue?
How often do I have imaging/scans done?
Can I have a drink occasionally?
Can I take tylenol or ibuprofen for pain?
Do I have to have a liver biopsy?
When should I have my daughters tested for PBC?
Does everyone experience fatigue and/or itching with PBC?
Thank you so much for your replies Donna. My alk phos was 225 when diagnosed and after 6 months on Urso came down to 133. It is now 118. My Urso dosage was prescribed based on my weight and I don't have any side effects. I am in the UK, hence the long wait for my NHS hospital appointment and I will be attending a Hepatology clinic. I am 75 years old and try to eat well and exercise regularly.
Sounds great! Your alk phos numbers are so good! couldn't ask for a better response to Urso. I'm 74.... trying to eat well and stay active. Movement is medicine! Keep us posted how things go for you. Again, don't be afraid to ask any questions here.
Being it’s the NHS I’d ask if it was possible to have a Fibroscan or Sheerwave elastography,this with your bloods will give a good baseline for your tests going forward. I would also ask about a blood check of vitamin D3 levels, a lot of PBC people are/were deficient. Also a DEXA bone scan might also be prudent to ask about. If you’ve not had one.
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