Bloodshot painful eyes: Hi, my name is Daisy... - PBC Foundation

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Bloodshot painful eyes

dlahullier0305 profile image
9 Replies

Hi, my name is Daisy. I was diagnosed in early December 2016, elevated liver enzymes tests were showing for over one year. I already had the itch itch for years, at least 3 or 4. I have had fatigue for about that long also. Now I have bloodshot and painful eyes. My liver biopsy is scheduled for Friday, March 10. Doc says it looks like I'm in stage 2. I will start medication after biopsy results are in. The itching subsided with daily application of a mixture I made of 4 oils. Then I would splash on baby cologne. For fatigue, laying down of course always helps. I will soon see my eye doctor. This does not go away with eye drops. Need steroids and/or maybe antibiotics. If you have questions, advice, anything, please let me know. BTW I also have diabetes, high blood pressure, osteopenia and osteoarthritis.

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dlahullier0305
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Hello dlahullier0305.

I wsa diagnosed with PBC December 2010. I am in the UK and at diagnosis I started on urso. I had no biopsy due to having the criteria (itching, above normal range bloods and antibodies AMA). I find it strange that due to your itching now and diagnosis you've not been given the urso already. Granted for me the itch hasn't stopped but it has altered in pattern and whereas previously I itched almost all the time I now itch later at night.

In the UK the wheels of the NHS turn slow unless you are an emergency and I did think after I was diagnosed that had I have been given the urso when I was itching during that year I might have felt better sooner plus my bloods might not have continued slowly climbing during 2010 (I went to my GP itching (also had fatigue at the time) early 2010 and it took 10 months for me to be prescribed urso and be diagnosed).

dlahullier0305 profile image
dlahullier0305 in reply to

Thanks. Docs did not discover till December 2016. Gastro is waiting for liver biopsy next Friday, before prescribing meds. He believes I am in stage 2, but needs more precise diagnosis and confirmation of stage 2. Thanks.

in reply to dlahullier0305

Hello dlahullier0305.

I've never had a biopsy as probably stated due to the fact I had the criteria to not have one.

Seems the norm in the States reading on here that anyone diagnosed with PBC without a biopsy is asked to have one.

I don't go in for stages of PBC. I am confident that a scan can give a good indication of liver health. i don't think that a biopsy is a great indicator from what I've read in the past regarding the staging with a biopsy due to the liver being a large organ and the part where the biopsy is taken might give a diff picture of the whole. But I'm no doctor.

A biopsy is said to be a definite for diagnosis of PBC though so any doubt and a biopsy tends to be performed.

dlahullier0305 profile image
dlahullier0305 in reply to

Hello Peridot. My doc requested that the liver biopsy be assisted with ultrasound. This will give them a better picture. I appreciate your reply and comments. Thank you. Take care of yourself. Regards.

SuzCurran profile image
SuzCurran

Hi Daisy, this eye trouble sounds to me like autoimmune uveitis. id get this once or twice per year. steroid drops work very well and very quickly. I can stop a bad flare up within 2 days as long as I catch it early. you will need to see an eye doc for the prescription. you can get a quick referral from an optician if ur really bad. personally I don't look into staging for pbc myself. I was diagnosed 21 years ago and have been taking urso for the last 10. always really high bloods and have had a few biopsys. general symptoms of at times debilitating fatigue extreme nausea but lucky enif not to have the itch. iv been sent a letter to book and appointment for a fibroscan but don't think ill bother. I just get on with it and do my best. I know all the signs and symptoms and how to deal with then as they come and go. stay positive....Suzanne

dlahullier0305 profile image
dlahullier0305

Hi Suzanne. Thank you so much for your response. I am doing my best to take this in stride. Just wanted to hear if anyone else had this because I do remember reading about it when I was first diagnosed in December. Thanks for your positive outlook. I know that being positive is more than half the battle. Take care. My best to you!

Sachin1234 profile image
Sachin1234 in reply to dlahullier0305

Red eyes can be due to dry eyes which is one of the symptoms of pbc..

I think liver biopsy gives your dr. much more idea for specific treatment you need!..I was prescribed urso after biopsy as well..

US has few little different criteria to confirm pbc then U.K. I guess..

dlahullier0305 profile image
dlahullier0305

Thanks. I cannot take Meds because I am already cirrhotic. I believe US docs have not dealt enough with this disease to know all the side effects, except gastroeneterologists, liver specialists, and maybe rheumatologists that are very good doctors at their profession, as it was a rehumatologist that went a few steps further to uncover the underlying cause of my ailments. Thank you for listening, reading and responding. God be with you.

Shulsey profile image
Shulsey in reply to dlahullier0305

dlahullier0305, Are you saying that you do not take treatments because you have cirrhosis? Im at stage 4 with cirrhosis & small esophageal varicies, among other issues as well. I take Urso plus Ocaliva. You should at least take the treatment for PBC unless you're considered a non-responder. My numbers were getting crazy again so my GI sent me to a university heptologist & he added the Ocaliva with the Urso. My numbers are slowly getting more stable, thankfully.

Stay strong❣️

Shannon

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