Newly diagnosed: I was recently diagnosed... - PBC Foundation

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Newly diagnosed

OHIO1919
OHIO1919

I was recently diagnosed with PBC. So still learning about disease. Just started on ursodiol for one month. 1200 mg daily. Wondering if this medication can cause bladder irritations and burning? If so why and what to do.. little comment from my Dr when I asked. Would appreciate input. I am still going through the reality of diagnosis 😢 reading information on internet and can be very depressing.

34 Replies
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Hidden
Hidden

Hi OHIO1919

I dont think it is the urso but i know a lot if us with PBC suffer drom frequent urine infections.

Dont read too much online as it will scare you and not much use. Join the PBC foundation, they give the facts which will reasure .

Angela x

OHIO1919
OHIO1919
in reply to Hidden

Thank you so much for getting back to me... UTI will be something I will be sure to watch for. Being new to medication just wasn't sure what to think. I am still trying to get over the shock of the unexpected diagnoses. It is nice to have a site to go to and talk with others. More helpful than Dr at times. Thanks😊

Hidden
Hidden
in reply to OHIO1919

It is a good site with very helpful caring people. The PBC foundation is great. Have a look at it. Its scary to start with but that will settle, every case is different and their are lots on here that have been diagnosed for many years now.

Xx

OHIO1919
OHIO1919
in reply to Hidden

Thank you for your input..

Ive put the link to the PBC Foundation for you, it’s free to join anywhere in the world. This was my saviour when I was first diagnosed 10 years ago. They also have an APP that you can download.

I’ve never heard of urine problems with URSO, the patient information leaflet will give you a list of common side effects, the most common is gastrointestinal heartburn indigestion that type of thing but that passes. Always have urso with food if you get any side effects that seems to help.

pbcfoundation.org.uk/

OHIO1919
OHIO1919
in reply to Candy12

Thank you for your response.. I just joined organization.. 😊👍

Hi.

I was diagnosed last October and went into a terrible state for 3 months .....I saw 2 private consultants and a NHS one who sent me for a fibroscan and MRI ......the outcome was yes I possibly had pbc ( ama positive ) but at the moment no liver disease ....this made me even more confused but they will check me in 6 months ....whether on medication or not our minds and bodies play so many tricks on us but one thing I would advise ...no going on the Internet ....stay with the pbc foundation and listen to the good guys on here .

Keep well xx

Thank you for responding. Definitely staying off internet. Good luck to you too

I have had this for 25 years and I have no symptoms I am under addenbrook I have just given blood to help them with there research there is 2 new drugs coming out I hope this is going to help those who suffer with the side effects

Wow, 25 years!! Please keep us updated on drugs.. my current problem is some upper abd pain which I hope subsides and extremely dry skin , itching. Any suggestions, is this common symptom?? Thank you for information 😊

Hi, I am so sorry you have pbc I was diagnosed in January of 2018. I also have trouble with irritations and burning .I think when I drink lots of water it helps and take cranberry pills I was taking just a cranberry pill and very little did it help and a friend said get the AZO brand of cranberry caplets for urinary tract health and it has made all the difference . I also have trouble with overly dry nostrils since I started taking urso I use saline wash and that helps but I wish I could find something that puts moisture back I think a lots of side effects goes and comes with pbc some could be from the urso (but we need it).I wish a lot of luck to you and ever one with pbc this was bad news when we were told that we have pbc. God Bless each of us.

OHIO1919
OHIO1919
in reply to recipes

Thank you for health tips.. I have never had any urine problem, dry skin, or itching in my life . So trying to adjust to all this difficult.. I appreciate information I am getting from this site..very helpful 😊 thanks and stay well.

luxe66
luxe66
in reply to recipes

I was indicating in previous posts an amazing thing to prevent bladder infections.

D-mannose...it is a lifesaver

I wish you guys try it. It has to be taken as PREVENYATIVE, and follow instruction

Lots of them on the Web!

OHIO1919
OHIO1919
in reply to luxe66

Never heard of that.. is it herbal?? Thank you.

luxe66
luxe66
in reply to OHIO1919

Just google it.it is natural.one of the components of cranberry

OHIO1919
OHIO1919
in reply to luxe66

Thanks

I also have had dry nostrils since starting Urso. Similar to gargling with Listerine to clean flem from the throat, I use saline to rinse and expel anything from the nose. I then put just a little cocoa butter in the nostrils before bedtime and no longer have a problem with dry nostrils. My doctor also believes doing this routine 2-3 times daily could reduce chances of contracting the COVID19.

Thank you. Loving advice..

Hi, thanks for the tip on dry nostrils I will try the cocoa butter and I have just heard that fresh aloe vera will help ,we need to buy the plant and get the gel from the leave and pack as much as you can up the nostril like at night and the gel will heel the irritations. good luck to each

OHIO1919
OHIO1919
in reply to recipes

It might just work.. aloe vera..

Hi, I was diagnosed in November last year and have been taking Ursodiol 250mg. I recently changed Pharmacy and am prescribed Ursodiol made by another company. The current drug information sheet does mention 'Signs of UTI like Blood in urine, burning or pain when passing urine..lower stomach pain..' under 'sides effects that I need to call my doctor right away'. To err on the side of caution, I would ask my hepatologist or Primary care doctor. Usually, my doctors would order a lab test to confirm. Do get in touch with your doctors if your symptoms persists or get worse. Take care and stay safe!

OHIO1919
OHIO1919
in reply to S1LK

I did see that also on side affects. I called my Dr office and they said that shouldn't cause that, but it was on the precautions sheet. They did order me a urine test. I just don't know why the Dr didn't know that could be a problem?? Weird. Thank you.

OHIO1919 I TAKE URSO NO ISSUES WITH BLADDER JUST THE DREADFUL ITCH AND I'VE BEEN ON EVERY MEDICATION THERE IS AND MY LAST RESORT IS TO GER ON DONORS LIST BUT I DON'T WANT TRANSPLANT UNLESS I KNEW THERE WAS A GUARANTEE WHICHTO MY KNOWLEDGE THERE ISN'T. I CURRENTLY DEAL WITH SEVERE ITCHING AND TAKE LIQUID BENADRYL NIGHTLY TO SLEEP. MY URSO DOSAGE WAS JUST CHANGED FROM 1200MG TO 900 MG IN HOPES OF SEEING IF MY ITCHING WOULD BE LESS. ALSO TRYING PRESCRIPTION ALEGRA. GOODLUCK AND THIS SITE IS VERY INFORMATIVE GLAD I JOINED SEVERAL YEARS AGO!

OHIO1919
OHIO1919
in reply to genj65

Thanks for comment... Good luck . I hope your itching subsides.. it is horrid. I am taking anti itch medication, doesn't work as well as I hoped it would. Feels like bugs crawling.

Remember a lot of stuff on the internet is based on old figures and we have more medicines and better outcomes now. PBC moves slowly, or can be halted with Urso for most people and you will be looked after carefully.

I was diagnosed and started Urso three months ago. The only side effect I've had is gaining half a stone, probably because I have to eat breakfast to have my morning dose. I'm on 20mg per kilo and my 6 week blood test showed they've brought my levels down by half. It really is worth it if you are able to take them so I really hope your bladder settles down.

OHIO1919
OHIO1919
in reply to hells456

Yes, reading stuff on internet was discouraging.. but when I got on this site I felt a lot better... Communicating with people who understand the problems is helpful. Do you have the itching?? My bladder is better after drinking more water... I will go for my visit in May.. hoping things are better. Thank you for taking the time to get back to me.

Hi Ohio, I understand how scary the whole diagnosis can be. I’m newly diagnosed at end of 2018.

I’ve not had any issues with my bladder , I did start having the horrible itch once I started taking Urso.

I still don’t fully understand it all. I read loads of things on the internet at the start and tbh, this made me worse.

I’ve been under a Gastroenterologist/heptologist since then. My appointments with her are very erratic instead of every 3 months as they’re so busy.

This site is fantastic for advise and helping you get through some of the bad times too.

Most of the members are very knowledgeable, I’m sure it’ll help put your mind at rest.

Take things day by day my lovely, you will get there. Xx Jane

OHIO1919
OHIO1919
in reply to P13jne

Thank you.. I appreciate any advice I can get.. the urso makes me sick at times, hoping that will decrease. And hoping the itch subsides.. has your itch improved?? I am thankful for these sites.. we are in this together 😊 take one day at a time. Good advice.

P13jne
P13jne
in reply to OHIO1919

My itch comes and goes, when it’s apparent I’m almost clawing my skin off it’s horrible. I have anti histamines and aqueous cream.

Take care xx Jane

OHIO1919
OHIO1919
in reply to P13jne

Not familiar with aqueous cream, with need to Google. Thanks.. 👍

Hi OHIO1919

I was diagnosed with PBC in 2001 and have never been troubled with bladder problems when taking Urso. but we are all different with this PBC. When I was first diagnosed my consultant told me I will die of something else before I die of PBC and thanks to a transplant I had 5yrs. ago I am here and living a full life. Well not at the moment with this self- isolation due to being at risk because of the drugs I take to suppress my immune system. Not being able to go out the house is doing my head in. Hopefully things will soon get better.

Like you I remember the initial worry when first being diagnosed. But I am now a 74yrs old male and looking forward to a good few more years yet. That is my situation but I have met others who are well alive without transplant after more years since diagnosis.

Good luck OHIO

OHIO1919
OHIO1919
in reply to allotment

Thank you for sharing your story with me.. talking with everyone has really help put some perspective to this illness.. at this time my health provider has not really discussed much with me... Just put me on medication... And will check my lab work. .. guess I was looking for more input from them. 🤔.. just diagnosed me and sent me home.. I have found much more from this site and all you responding.. I am thankful.. good luck and I wish you the best.. stay safe ...

Hi Ohio1919! I am thinking maybe you're in Ohio by your User ID. I'm also in Ohio and was diagnosed in November 2019. My Doctor is at the Wexner Center at OSU in Columbus. Anyway I've found the Facebook group PBC Angels to be a very good companion. If you are active on Facebook check it out. It's a private group so you will have to join but it is all people who are experiencing the same situation as you are. Best of luck!

Yes, I am from the foot ball hall of fame city of Canton! A few hours from Columbus.. I appreciate any information I can get. Is OSU doing any case study for PBC?? and does Wexner specialize in this ailment?? Just wondering... thank you for getting back to me and informing me about the fb site.... Wishing you also luck with this disorder.. it can be stressful..

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