Ocaliva is working for me ๐Ÿ™Œ๐Ÿป๐Ÿ™Œ๐Ÿป - PBC Foundation

PBC Foundation

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Ocaliva is working for me ๐Ÿ™Œ๐Ÿป๐Ÿ™Œ๐Ÿป

Alison2306
Alison2306
โ€ข23 Replies

Diagnosed around 5 years ago with PBC and was on 1500mg urso and nothing doing. After biopsy February I was told now stage 1 childโ€™s cirrotic ๐Ÿ˜ญ but NO symptoms like ZERO.

Iโ€™m very lucky to now be on Ocaliva - Obeticholic Acid 5mg daily

I started treatment on Monday 9th April and had my bloods done on Monday this week and saw my GP to go over my results.

My ALT is 48 (this is actually in the normal range! Whaaaat!?!) before treatment on new drug it was 131 ๐Ÿ™Œ๐Ÿป

My cholesterol is down from 7.95 to 5.37 ๐Ÿ™Œ๐Ÿป (Not on any statins)

My alk phos is currently 328, pre treatment on new drug was 847 (highest it has been was 950) I know not in normal range but a third of what it was!

Extremely encouraging results!!!! I knew it was going to be good as I feel like a new person. I just got tired before but now I feel like ME.

Positive vibes going forward. I see my consultant on 21st June Iโ€™m expecting a high 5

23 Replies
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Awesome๐Ÿ‘I take Ocaliva, since last October. Labs are great...so far. Iโ€™m glad to see someone report a positive response with Ocaliva. ๐Ÿ˜Š

Only itching a little my feet and hands but Iโ€™m coping with cooling sprays and keeping hydrated and moisturised. Happy tears from me and my doctor today sheโ€™s awesome and cares. Iโ€™m 35 this month and feel like a Weight has been lifted and I just need to keep doing what Iโ€™m doing xx

Happy for you. Keep doing what youโ€™re doing ๐Ÿ‘๐Ÿฆ‹

And you too the results are what we need x

Happy days!!!

Such encouraging news! Ride the happy wave!! "๐Ÿ„" we rejoice with you. ("happy ๐Ÿ’ƒ dance here).

Stella โค

Alison2306
Alison2306 in reply to Ktltel

Riding the wave today ๐Ÿ„โ€โ™€๏ธ i feel like I want to scream it out and tell people. Iโ€™ve brought a few members of my close family to happy tears today! X

That's really good news! It's very encouraging to hear that this is working for people!

Pam

Alison2306
Alison2306 in reply to 4pjx__

Hi Pam

Iโ€™m so pleased as this was the last treatment for my consultant to try me on ๐Ÿ™Œ๐Ÿป Only positive comments from me on ocaliva (Obeticholic acid). Kind of feel like Iโ€™ve won the lottery

Great news. Rejoice and stay positive!

Alison2306
Alison2306 in reply to EileenUSA

100% focus on the good and remain positive x

I am so pleased for you it's encouraging to hear such good news.Jane

Great news i have heard other very poditive results re ocaliva

Great news Alison - so pleased to read your happy news.

This is my 5th year on OCA ( on trial here in Ausralia) and it also brought my ALP and GGT down significantly.

Cheers and well done

Karaliz

Awesome! Thatโ€™s great news!

๐Ÿ™Œ๐Ÿป I was so down about nothing working of slowing process down. This has just brought me up and feeling positive and so very thankful

Alison2306...I saw my NP Thursday. I shared with her that if my next fibroscan shows good results with little to no progression, I am hoping I can relax a little more. A year is a long wait to see if med is doing a good job. She said i donโ€™t have to wait till September if I would like sooner. Iโ€™ll probably schedule for early August.

Wonderful news so shop for you x

Happy news that you found something to help with your LFT's lowering. I was just reading about the side effects and was wondering if you have experiences any of them. I know you said hands and feet were a little itchy...maybe from the med, maybe from the PBC itself..hard to factor. I am allergic to URSO, so this sparked my interest. But I have to say, the listed symptoms are a little frightening to me. Not to say that PBC itself doesn't scare me, but sometimes I have to wonder, as Joan Osborne said in her song..."What if the cure is worse than the disease?" I wish you the best outcome on your journey with this. I know how good it feels to see better labs. Embrace your joy! Hopefully someday, research will find something to prevent this madness...probably when monkeys fly!

Alison2306
Alison2306 in reply to mrspeffer

I gave all side effects list to my partner and put myself on a google ban. I really was at the point of I need to try this or this PBC will silently keep destroying my liver. Iโ€™m only 34 and last biopsy showed cirrhosis and classed as childโ€™s stage 1.

Iโ€™ve never had any itching (lucky I guess) from my PBC only thing Iโ€™ve ever had was tiredness and not fatigue like others experience just super tired come 2pm in afternoon.

The itching of feet and hands kind of comes in waves and I would say it started 2 weeks into ocaliva treatment.

My GP couldnโ€™t believe the difference in such a short period of time (8 weeks) my levels have been off the charts since 2014 some peaks and troughs but generally very very bad.

I gave my other half the list of side effects so I wasnโ€™t thinking about it and waiting in a sense and when i didnโ€™t feel normal i let him know. But so far 8 weeks in the itching is definitely subsiding. When it was bad I actually took the skin off of the top of my toes scratching!

Now itโ€™s only if I get hot it effects my feet mainly.

mrspeffer
mrspeffer in reply to Alison2306

I really appreciate that you took time to write back to me. I am very fortunate that I usually am asymptomatic of itching and fatigue. I sometime times wonder if it's my diet, lifestyle, bio-identical hormones, or what! but I'll take it, right! Anyway, as I said, I'm allergic to sulfa, so no URSO for this girl. But when I get LFT's back nd they are always high, reality sets back in. Believe it or not, I'll see my first Hepatologist next week since this all began over 21 years ago. G.I.'s have been seeing me, but I have never been staged. Well, I begged a G.I. for a Hep. referral and fought insurance for 3 months to see a guy here in AZ. So, I'm putting notes in my "GOD BOX" that this Hep. doc will grant me the privilege of a fiberscan. My biopsy did rule out everything els, and as suspected they diagnosed me with PBC. I sometimes wonder if this is a mis- diagnosis. I was very fatigued for years, and the itching was crazy. I too have lovely scars from scratching arms and legs...hate when the top of toes itch.

So again, thanks for the information and your time. I'm going to have to probably pass on the medication you found, as I am hyper-sensitive to most, but we'll se what the doc's here have to say. In the meanwhile, I'm finding a liver supplement and milk thistle are holding me at my normal high level. Hope your success continues to soar.

Best wishes to you...M

Alison2306
Alison2306 in reply to mrspeffer

Fingers crossed you get access through insurance and doctors to a fibroscan. Iโ€™m lucky to be near a hospital 30 mins drive away with the machine.

Painless and gives them an idea of fibrosis stiffness in your liver.

Wish you well and hope the fibroscan gives you positive results and your liver is still coping well xx

Where are you from Alison? Glad you've had such a positive response to the medication.

Alison2306
Alison2306 in reply to Jmorrison

Im in Perth in Scotland. Thank you ๐Ÿ™๐Ÿป keeping on with the positivity on this one

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