Five years diagnosed: January 2022, will be... - PBC Foundation

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Five years diagnosed

Jennyhadenough profile image

January 2022, will be five years that my liver enzymes elevated. January 2017 was a trying time for me.

I started college September 2020. I was very surprised to pass my math class with an A. Pre-algebra that ended with algebra.

May I ask how my 5 year aih/pbc friends are doing health wise?

I’m working hard on myself. I am concerned for fatty liver with a cap score of 350 last year. My Dr said that I won’t know for two years if I have fatty liver.

I’m thankful that I don’t have the dreaded symptoms of pbc/aih. I wake up in the morning and my eyes burn badly. That is about it.

I haven’t posted in a while, I just wanted to share my news and maybe get some feedback on my Cap score with my fibroscan.

Take care

Jenny

11 Replies

Hi just a thought I have very dry eyes along with pbc sicca or sjogrens is a common part of pbc lots of eye lubricants available not a cure but do help ask your doctor xx hope this is helpful x I was diagnosed pbc for 18 plus years ago and itch have dry eyes and I push myself thro fatigue best way of me to deal with fatigue lol

Are you able to work

I am retired BUT I look after my grandchildren 5 days a week only one a day but the boys are almost 2 and 2 1/2 so always busy !!

Good to read your post, congratulations on your A in maths. Well deserved I am sure.

I am unable to share any experiences on a fibroscan as I have not had one. I am sure it will be interesting to see how well you are doing in the future.

I have dry eyes especially in the morning, I now use Hycosan I was using the mauve but have moved to the red which is more oily and seems to ease the morning dryness leaving my eyes more comfortable.

best wishes

I was diagnosed with blepharitis. I’m hoping to stay stable for a long time

Hi Jenny … I’ve now had PBC for 10 years. Can’t tolerate Urso. Can’t tolerate Ocaliva. Have in the last 3 months been given Bezalip 400mg (also known as Bezafibrate) one tablet a day. The French have been using this for PBC apparently. Its job is to lower fats in the blood so I call it the fat tablet! No problem taking it. I only notice slightly greasier face. Interestingly my ALT and Alkaline Phos. have both radically dropped in the first 3 months of use. Alk Phos from 450 to 157 now. ALT from 147 to 80 now. Fingers crossed it keeps dropping.

Hi Jenny you are doing well. The dry eyes are a big issue. You need to get some really good moisture eye drops . I put them in if l wake overnight as well.

It is one of the symptoms of PBC.

In Australia l get a script for an over the counter one just to make it cheaper.

Called Hydro forte

Believe me l have tried them all. I can not open my eyes most mornings without the drops.

I am much older than you my cherup

Good luck you seem to be enjoying life and travelling well xx

I just turned 58 years old. I completed one year of Community College. I am taking college English and computer classes. I have one more semester of algebra. By Summer of 2022 I will have all my classes college level. Math and Writing is so far most challenging.

Hi, I pulled out my most recent fibroscan scores to check on my CAP score and what my doctor said. My most recent CAP was 261, down from 290 the previous scan 2.5 years ago. My doctor said the 261 would be considered stage 1 fatty liver disease. I was told that it's just something to monitor at this point. He also said that CAP scores over 280 are when he starts to monitor more closely. I'm not to see him again for two years (from this past April). I never had fatty liver until I gained weight due to starting urso. I lost about ten pounds between the higher CAP score and the most recent one, and I believe that is what helped me reduce the score. However, I know that plenty of people have fatty liver issues without being overweight. Anyhow, just know that it is reversible in some cases at least. Good luck!

I gained 40 pounds taking prednisone. I lost 30 so far. I am still trying to lose weight. I also take Azathioprine

Jenny, I was diagnosed in Oct., 1991. I'm 30 years & counting...just wanted to let you know Ursodiol/Actigall is a miracle worker. I've been on it since the beginning. I eat well, organic when available, low/no salt, chicken, grass fed free range beef, Alaskan wild caught Salmon...and I've been gluten free for 20 years. Hope this gives you a good feeling for your future. I'm 74 & plan to reach 100.

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