Update on my IU visit

[Shulsey]

Happy to say that I made it to Indianapolis safely & to my appointment as well. Dr Masuoka said my numbers are great, pretty stable compared to my past numbers. But, he said he would still like for my ALK Phos to come down more. I spent the day today calling & scheduling three orders to have done closer to home. Having a CT scan on April 2nd, Bone density scan on the 3rd, then my usual six month EGD on the 24th. Fingers crossed everything remains on the up & up. Thank you all for the prayers & good vibes 😊

Stay Strong ❣️

Shannon

[donna01]

Great news Shannon!! Yay!! How high is your Alk phos if you don't mind me asking?

[Shulsey in reply to donna01]

I was at 207 back in September, Im down to 192 now. It's a little high still, but Im heading in the right direction. Prayers that all of my procedures I scheduled today come back good 😊

[ninjagirlwebb in reply to Shulsey]

My hepatologist told me for PBC patients < 200 is good.

[Shulsey in reply to ninjagirlwebb]

25-125 is considered reference range. Dr Masuoka stated he'd like to see mine lower. But, also says that it will probably always be a little high due to being stage 4 PBC.

[ninjagirlwebb in reply to Shulsey]

Yes...that is what my doctor said for PBC patients that it may be higher vs average person. For my specific labs, normal reference range is 39-117. Alk Phos is what clues them in about state of the liver.

Is there anything your doctor can change in your meds protocol to lower it?

[Shulsey in reply to ninjagirlwebb]

Already added the Ocaliva 10mg daily with the Urso 500mg twice a day. Im at F4 cirrhosis stage with large varicies. Im actually doing all that can be done for the PBC. Which is keeping up with the treatment, procedures, & monthly labs. When I was first diagnosed my ALK Phos was way over 2000. So the treatment has actually done great for me & I have a excellent healthcare team keeping a very close eyes on me. Truly blessed with them.

[ninjagirlwebb in reply to Shulsey]

Good! Hopefully you can remain at Stage 4 with the meds!

[ninjagirlwebb]

So happy for you!!!

[Ballymahon2]

Great news shannon i wondered how you hot on such a difficult trip with the snow

[gwillistexas]

Wonderful! Happy things are going in the right direction for you💕

[4pjx__]

Yay! So happy to see this news! So glad you made it to your appointment. I was worried about you. I have to have my scans every 6 months and its pretty stressfull. May you be well!

Pam

[Yankeerose3]

So glad you made it safe and dr had good news. Hope everything keeps getting better

[Ktltel]

Yahoo Shannon!

You can breathe for a while right? Whew... this disease!! Keep doing what your doing... Hope and pray things keep falling into place for you.

Keep us posted when you're up to it. We're all in your corner! ❤

Stella

[butterflyEi]

Good news to read! Glad your specialist is on the case.

My last bloods were 137 for the ALK with a reference range of 30-130. I think I am very lucky to have such good results.

Keep up the good work.

[Prettyeyes79]

Great news! Now if you get disability approve that’s cherry on top

[DRK1960]

Glad you got there safely and got some good news.

[LorraineLouise]

Shulsey

So happy to hear of your good news. My Dr always says we may never have normal range alk phase levels. Mine range 150-200 and probably will always be in that range. He is happy with those numbers.

Keep up the good work👍🏻👍🏻👍🏻

[liver-bird]

Sounds like you are going in the right direction Shannon. Good news

[koko1]

how are you?

[Shulsey in reply to koko1]

Im doing good, ALK Phos are the lowest they've ever been. Recently started a exercise routine art poor local hospital. The trainer researched all of my health issues before getting a routine together so he knew I needed to start slowly. I have good reason to get as healthy as possible. My oldest daughter will be having my first grandbaby in Feb. Found out yesterday she's having a girl ❤️.

I hope you've been well. I hardly ever get on here anymore.

[gwillistexas in reply to Shulsey]

So good to hear from you & that you’re doing well. We all miss you🌷congratulations on the new baby girl💖

[koko1]

nice to hear that.congrats.

maybe someone reads this and gets like me 25mg ocalivada (obeticholsäure) a day for a nash (fatty lever) ? i get it now for 18 month but i started to get problems with blood pressure and that my heart feels not good and safe anymore...

did someone experienced such problems?

would be nice to speak to some who takes it aswell...

best wishes to all

[gwillistexas in reply to koko1]

koko1...I take Ocaliva 5 mg. No issues that I’m aware of, except small increase in fibroscan score. Concerning...

[Shulsey in reply to koko1]

I've not heard of anyone taking that much Ocaliva. Did your specialist start you at a lower dosage then gradually increase it? My heptologist started me on just 5,mg. Kept a closer eye on my bloodwork. Then increased it to 10mg daily. I'd honestly question this with your specialist.

Shannon

[koko1]

its a study from intercept the company which made this product and its a joke its impossible for me to take it anymore. got serious cardioviscual problems but the

doctors in this famous hospital in germany didnt say anything bad about it. i did some research now and its unbelievable. they are trying to run this product just for the money

this product is really bad. thanks for your response-take care it makes real problems even in a lower dosage long term.