Finally! Some good news. : Hello PBC family... - PBC Foundation

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Finally! Some good news.

Ktltel profile image
25 Replies

Hello PBC family,

I was diagnosed with PBC last year in Oct. Like many of us, I was scared and stressed out with the news of my new chronic disease. To make matters worse I didn't tolerate the URSO. I got super sick on it and they took me off of it after 3 weeks and a loss of 12 lbs. So.... the months that followed were filled with Xanax, naturpaths, blood tests, GI appts, supplements, and a super restrictive auto immune anti inflammatory diet (which I'm still on).

Early in February this year I saw a hepatologist (waited 3 months for that appt.) who wanted me to give URSO another try. I would start at 1/2 the recommended dose for my weight and s l o w l y ease up to the full dosage. I waited a little over a month to give it a try again. I've been having monthly blood draws to keep track of my liver numbers. Well, I'm happy to report that I'm tolerating the lower dose URSO this time. ALSO.... I've lost enough weight in the last 6 months to stay at a lower dose!!!! (Yay) AND... got my blood work back from my latest draw.....

"All my numbers are down!"

I Just had to share this. I haven't had good news for a while. I forgot what it was like to just feel somewhat normal....

That's my boy Brodie!

Stella Dx 10/10/16 early stage PBC

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Ktltel profile image
Ktltel
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25 Replies

This is great news for you. I love your photo

jemlola profile image
jemlola

Hi kitltel

Thanks for sharing this, so nice to hear your good news. Look after yourself and get back to enjoying life. Take care and stay well. xx

Ktltel profile image
Ktltel in reply tojemlola

Thank you. The joy is short but sweet. So many here under much stress. I totally understand it too. All of us have our ups and downs. Prayers for us all. ❤

Caraway profile image
Caraway

Oh that's fantastic Stella! :D Brodie looks chuffed too! What a lovely photo! :)

I was wondering - if someone doesn't tolerate the Urso - how soon does that manifest itself? Is it an almost immediate reaction from the very first pill and every time a pill is taken or a slow build-up of intolerance and then a bad reaction...? I just wondered as I've just only started taking it yesterday.

Oh and the anti inflammatory diet sounds interesting - is it a diet tailored to you specifically or did you find it online somewhere?

Thanks and again - well done! :)

Ktltel profile image
Ktltel in reply toCaraway

Caraway,

It's true... I maybe jumping for joy too soon being that it's just one week back on the URSO. The first time I was sick already with gastritis so, when I started the URSO I didn't know it was the drug making me sick or the gastritis. I couldn't eat. Yet I was taking the URSO. Not good. It really messed up my already sick stomach.

Yes the auto immune anti inflammatory diet is tailored to my specific allergies but, most anti inflammatory diets have ones cut out the following

Dairy, sugar, salt, wheat, and gluten. Natural sugars are OK.

I drink bone broth for leaky gut. Once a day first thing. Google auto immune diet, or anti inflammatory diet. That will give you an idea.

Caraway profile image
Caraway in reply toKtltel

I hope your stomach is better now? I will google the diets, thank you! :)

Ktltel profile image
Ktltel in reply toCaraway

Thanks, yes the gastritis is how they even found the PBC. Through blood tests. Been over the stomach issues for a couple months now. That's why they had me restart the URSO. I'm hoping and praying I keep tolerating it. Just remember to take it with food. 👍

emerich profile image
emerich in reply toCaraway

Hi Caraway, I took urso for 7 days with no problems, then massive allergic reaction overnight. X

Ktltel profile image
Ktltel in reply toemerich

Emerich, How are you doing? Any changes since diagnosis?

emerich profile image
emerich in reply toKtltel

Hi Stella

I'm good thanks, not much change really, maybe more tired days, but don't sleep that we'll so might just be that. Annual check up soon so fingers x'd 😊. Hope you're feeling well today.x

Ktltel profile image
Ktltel in reply toemerich

I can't complain. I see my naturopath tomorrow. Seem like if it's not one thing it's another. I've had this weird joint pain going on. It seems to travel. First one knee then my wrists, then neck and jaw pain,.... Strange. Sometimes they all hurt. Today it's jaw and knees! Lol

Glad to hear you're doing OK. I remembered you can't take URSO. Have you looked into the new drug? Okaliva I think it's called.

emerich profile image
emerich in reply toKtltel

I have my annual check up soon so I'll see what he says. If nothings changed bloods wise I'm not really keen on trying it. It seems a common side effect with it is itching . Also I'm a bit nervous of an allergic reaction as I think it must be similar base to urso?

Ktltel profile image
Ktltel in reply toemerich

Right. Here's praying you stay asymptomatic

emerich profile image
emerich

So pleased to hear your good news Stella. X

Ktltel profile image
Ktltel in reply toemerich

Thanks.... Here's hoping it continues. 👍

butterflyEi profile image
butterflyEi

Hi Ktltel

Lovely to read your post, glad you have good news. Wonderful photo.

best wishes

Sylvia1968 profile image
Sylvia1968

Brill news xx

Skypony profile image
Skypony

Oh Ktltel that's wonderful news!

And your gorgeous photo illustrates how pets can be one of our resources!

debim profile image
debim

This is awesome...Thanks for sharing...may you continue to receive goods news and embrace your new "normal"...love your photo.

Ktltel profile image
Ktltel in reply todebim

Thank you. Mr. Brodie resists being hugged. Lol

Angel_b profile image
Angel_b

Fantastic news!

Ktltel profile image
Ktltel in reply toAngel_b

Thank you! Here's hoping it keeps up.

Janeway profile image
Janeway

Great news! so happy for u :-) love the photo x

Eppy profile image
Eppy

great news

gwillistexas profile image
gwillistexas

that’s great! Glad you are doing well. 😊

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