YAY!!: Hi all, I just wanted to share my... - PBC Foundation

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YAY!!

youaremysunshine profile image

Hi all,

I just wanted to share my good news. I was recently diagnosed two months ago and started on URSO 6 weeks ago. I have been taking my URSO and started an anti-inflammatory diet including a lot of lots of veggies and supplements! I am so happy to say that my labs done yesterday are now normal!!! I am ecstatic! I hope you are all well.

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youaremysunshine
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47 Replies
Ktltel profile image
Ktltel

Wonderful news! So good to hear it. Very encouraging! 👍👍👍

youaremysunshine profile image
youaremysunshine in reply toKtltel

Thank you!! I am praying it stays that way.

Where was your enzymes when you started if you don't mind me asking

youaremysunshine profile image
youaremysunshine in reply to

Hi. My alk phos was over 200, my alt and ast were 50's-70's. I don't remember exactly.

I'm happy for you and hope for health for all of us

youaremysunshine profile image
youaremysunshine in reply to

Me too!

butterflyEi profile image
butterflyEi

great news, well done

youaremysunshine profile image
youaremysunshine in reply tobutterflyEi

Thank you!

Angel_b profile image
Angel_b

Fantastic news! So pleased for you

youaremysunshine profile image
youaremysunshine in reply toAngel_b

Thank you!

Janeway profile image
Janeway

Fab news! :-)

youaremysunshine profile image
youaremysunshine in reply toJaneway

Thank you!

liver-bird profile image
liver-bird

So pleased for you - keep up the good work

youaremysunshine profile image
youaremysunshine in reply toliver-bird

Thank you!

liver-bird profile image
liver-bird

So pleased for you

Jo_Br profile image
Jo_Br

Yay indeed! Hope it stays that way always.

youaremysunshine profile image
youaremysunshine in reply toJo_Br

Me too!

KatherineM_PBC profile image
KatherineM_PBC

That's great - sounds like they found the PBC early and you have responded well to URSO. Same with me :-) I have gone 'gluten free' in the hope it will help my 2 auto-immune conditions from progressing. Good luck to you, hope you continue to feel 'well'?! x

Bonnieanne54 profile image
Bonnieanne54 in reply toKatherineM_PBC

I was diagnosed early 38 twenty two years ago. Mine were 600 and have stabilized for 22 years with a bearable back itch at 200-220

Urso is a miracle drug if caught early. My fibroscans show a very elastic liver though fatty

youaremysunshine profile image
youaremysunshine in reply toBonnieanne54

That is so great to hear. I am 34 and want to watch my baby grow up. I was diagnosed early and have made life modifications to eat clean, exercise more, and stress less. It seems to be working with the URSO.

Bonnieanne54 profile image
Bonnieanne54 in reply toyouaremysunshine

You will ! My Doc told me I will die of anything but my liver Unfortunately the effects of an auto immune disease can knock you on your butt for says zzzzzz

Bonnieanne54 profile image
Bonnieanne54

Congratulations Stay compliant with the urso. I've been on it's 22 years stage one !

JaneIng profile image
JaneIng

Great news. That also leaves hope for all of us.

What's your AMA M2 level before the Urso? What is it now? If you don't mind, can you tell us what supplements you are taking?

Thanks,

Jane

youaremysunshine profile image
youaremysunshine in reply toJaneIng

Hi, My AMA was 1:640 but they haven't re-tested it yet. I was just diagnosed two months ago. I take Vit D, a Mulit-vitamin, B-complex, and I just started Coq10. I drink milk thistle tea a few times a week. I think eating a very clean diet full of veggies is really important, especially greens and cruciferous veggies. I have also been juicing and drinking smoothies made of organic veggies and some fruits. I ate healthy in general before, so modifying my diet wasn't too terrible, but some days it's hard. My body craves more veggies now and doesn't tolerate unhealthy foods since I have started to change my eating habits. I am also focusing on mind, body and spirit healing. I hope this helps!

youaremysunshine profile image
youaremysunshine in reply toyouaremysunshine

Oh and Probiotics!!

JaneIng profile image
JaneIng in reply toyouaremysunshine

Thanks so much! I take the supplements you mentioned here except coQ10. I think I will add it now. Green smoothie causes me acid reflux but I do eat a lot of leafy veggies.

I am so glad it works for you. Have a wonder day!!

Jane

youaremysunshine profile image
youaremysunshine in reply toJaneIng

Hi, Just do your research on CoQ10 as it can have side effects, especially if you are diabetic.

JaneIng profile image
JaneIng in reply toyouaremysunshine

Will do. Thanks!!!

tonia66 profile image
tonia66 in reply toyouaremysunshine

I have been told that our bodies "crave" what we are nutritionally defiencent in and for the last two years I have not been able to get enough "greens" in my diet or berries! I make and have a salad 2x's a day and easily eat steamed broccoli 3-4x's a week for lunch and or snack....

2bear profile image
2bear

Hi terrific. Can u say what supplements u are being recommended ? My liver specialist who is also osteopath states concern with them as he doesn't know the impact on liver and kidneys. It is a conflict because we all want to do something preventative .. so please

Let us know what has been helpful

Thanx.

youaremysunshine profile image
youaremysunshine in reply to2bear

Hi,

I take Probiotics, Vit D, a Mulit-vitamin, B-complex, and I just started Coq10. (Nothing too extreme). I drink milk thistle tea a few times a week. I think eating a very clean diet full of veggies is really important, especially greens and cruciferous veggies. I have also been juicing and drinking smoothies made of organic veggies and some fruits. I ate healthy in general before, so modifying my diet wasn't too terrible, but some days it's hard. My body craves more veggies now and doesn't tolerate unhealthy foods since I have started to change my eating habits. I am also focusing on mind, body and spirit healing. I hope this helps!

2bear profile image
2bear in reply toyouaremysunshine

Hi. Yes very helpful. Here's my dilemma. Some of the things may interfere with Urso. Possibly. They haven't don't research and probably won't ..

For example look at what grapefruit does and they won't research it more unless there is a need. So do these things interfere ? And i take synthroid. Trying to coordinate it so maximally effective. Any ideas ? Take care. :)

youaremysunshine profile image
youaremysunshine in reply to2bear

I don't know about things interfering, I always take URSO by itself with meals and take supplements during other times of the day. I have done a LOT of personal research, so I can't say it's backed up by a Doctor recommending it to me, it's what I feel is right for my body. I am also a Nurse, so it helps to have some medical understanding. There are other supplements I am looking at too, but haven't started yet. As far as some of them go, its important to get adequate Vit D, and B, as well as a multivitamin anyways. Probiotics are really important for gut health in general. I make my own bone broth too. I drink lemon water most mornings to start my day instead of coffee. I just started working with a naturopath who is sending me for blood work next week to evaluate my levels. I am making decisions based on my own research to be honest, I am not saying its the way to go for everyone, as we all have our own set of health issues, but this is what I am doing. I really think the clean eating approach to help reduce inflammation in combination with the URSO that is helping. I am happy to help in any way!

tonia66 profile image
tonia66 in reply toyouaremysunshine

I've been doing a lot of research on a "PBC" diet. Being in the medical field certainly helps, I am graduating (2 weeks!) with a bachelors as a "Health Promotion Specialist" and have had to take many classes dealing with human anatomy (including anatomy...hardest class EVER!)...lol

Are you State side or in England? I'm in states, near Washington DC....

youaremysunshine profile image
youaremysunshine in reply totonia66

Congrats! I am in the US, I live in CT.

Mrsfancypants profile image
Mrsfancypants

At last some positive news! Great. Can I ask you exactly what you were eating and which supplements you were taking please xx

youaremysunshine profile image
youaremysunshine in reply toMrsfancypants

Hi Wendy,

I eat a lot of fresh organic veggies and fruit. In the morning I drink warm lemon water and make a smoothie with kale, spinach, carrots, and frozen berries. I drink homemade bone broth later in the morning. Sometimes I make a scrambled egg too. I don't eat processed foods. I also drink juiced veggies a couple of times a week. (Beets especially are very good for liver health). For lunch and dinner I eat a salad or I cook up some veggies. I eat some organic chicken, but I am trying to eat more wild caught salmon to get lots of omega 3's into my diet. I supplement with fish oil or flax seed oil to get omegas. I follow what is called an "Autoimmune Paleo diet." It took some time to adjust initially but its much easier now. I have always been health conscious so it wasn't such a big change for me personally. I try to get 3 cups of leafy greens per day and 3 cups of colorful fruits/veggies per day. Cruciferous veggies are really important, such as cauliflower, broccoli, etc. Some days are better than other! Hope this helps!!

Kiki

Mrsfancypants profile image
Mrsfancypants in reply toyouaremysunshine

Hi Kiki

Thank you for your message and sorry I hadn't seen it sooner ( I try not to look at this too much as it makes me very much down in the dumps, but your post didn't. Thank you. Are you in the U.K. ? Xxx

youaremysunshine profile image
youaremysunshine in reply toMrsfancypants

Hi,

I totally understand. I try to balance how much I'm reading because it overwhelms me and gives me anxiety about the diagnosis. I'm taking it all day by day. I live in the US. I'm glad my post could help. I wish you well!

Kiki

Mrsfancypants profile image
Mrsfancypants

I'm exactly the same. Anxiety wise. Keep me posted as to how you are getting along xxxx I'm uk

SuziRae profile image
SuziRae

I started and organic diet. I'm not hysterical about it, I just stopped processed food including BBQ chickens from the grocery story I used to love. My last visit was good. Blood was good. Little white telltale bumps disappeared from my face. I still have flare ups of itchy sores on my skin but Benedryl helps that. I only drink beer (Coors Light) and stopped for 5 months but I now again enjoy a cold one. It's all about moderation.

Sachin1234 profile image
Sachin1234

Very good.. keep taking your urso no matter how normal your enzymes are!👍🏼

Ktltel profile image
Ktltel

Can I ask... What kind of URSO are you taking? Does it have a name brand? Is it Generic or the real thing?

Stella ❤

youaremysunshine profile image
youaremysunshine in reply toKtltel

Hi, sorry I am just seeing this. I have been on Generic, but I am trying to find brand name. What about you?

Ktltel profile image
Ktltel in reply toyouaremysunshine

The generic wasn't working for me so I'm starting the real URSO Forte today.. the 18th. I should have started it last week but they messed up on coding it correctly and it was gonna cost me $675 per month. My doctor finally called the pharmacy and cleared that up. 👍I didn't have to pay anything. In January I'll be paying $75 a month for it.

So, I will have labs the last week of this month and see how it goes.

Stella ❤

youaremysunshine profile image
youaremysunshine in reply toKtltel

Oh good luck! I am praying I can start on it soon! Hope you are well.

youaremysunshine profile image
youaremysunshine in reply toyouaremysunshine

I was able to find the real URSO after some searching and I too will start this month. A little pricey but worth it I think!! Lets hope it helps!

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