Current Labs and starting "real" URSO Forte Dec. 11th.

[Ktltel]

Hi PBCers,

So my Alk-phos has been slowly climbing. Went from 134 to 174 in 3 months😕. Been on generic Ursodiol for 9 months. Many of you posted encouraging words and sent important information for me to read. Thank you! ❤❤

I decided to up the dosage of my generic Ursodiol **(With my doctors approval)**. Others shared their experiences with me about how "some" generic drugs are only required to use 80% of the actual drug, the rest are fillers. So I got to thinking, since I'd gained 10 lbs (I know... bad me!) and my Ursodiol is generic and may be using only 80% of the actual drug, well, maybe that's why my Alk-phos was slowly climbing. 3 months ago when I weighed less my Alk-phos was dropping.

Anyway, the past 2 weeks I've been taking 250mg more generic Ursodiol. Today I had labs... My alk-phos went from 174 two weeks ago to 162 today. Not a big reduction but a reduction none the less.

I don't get my GGT or CRP back until Monday. AST and ALT, bilirubin and albumin in normal range, although those numbers move around within their range from month to month too.

In the meantime, my insurance has approved me getting the "real" URSO Forte. I start that on Monday Dec. 11th. $75 a month with insurance. $1,300 a month without it. I'm so thankful they approved it for me.

So, for now, that's good news to me and I'll take it!!

Whatever is going on in your lives... the ups and downs, the good and bad. It's nice to have each other to bounce many of our concerns off of and get support from. Thank you ❤❤

Try to have a good weekend friends.

Stella ❤

[Hidden]

Hope the name brand urso works for you. You are in my thoughts. 🤗

[Ktltel in reply to Hidden]

Nycgirl2012,

Thank you ❤,

I'm hoping things keep moving the right direction too. 👍

Stella

[lorilee58]

Thanking for sharing, this is all so new to me. I so appreciate all the post; any and all information you share. I have to use the "real stuff" also the generics do not work for me. Did it take awhile for you to get use to the URSO Forte when you first started taking it? I feel as though I have the flu all the time and the fatigue is like nothing I have ever experience before. I hope that your numbers change with the "real stuff". Take care and happy holidays!!

[Ktltel]

Lorilee58,

Hi, yes it did. At first I got sick on it and they took me off of it for 3 months. I was suffering from gastritis at the time. Then they restarted me on it when I was better and I tolerated it.

You've got to take it with food, a meal really. Not just an apple or glass of milk although some do take that way. For me it bothers my stomach unless I take it with food.

The side effects are sort of super mild flu like symptoms for me. Slight dizziness too. But it gets better as you get used to it. ❤

[Hidden]

Stella what is normal enzymes for alp. My dr won’t let me blood test every week or two anymore. I had to join the gym back and get a fit bit for my weight gain. 30 pounds is what I gained. It’s great the yur insurance company will help pay for the real Urso. I hope that it continues to lower.

[Ktltel in reply to Hidden]

Thanks Jenny,

I think my doctor said 40 - 120. The lowest I've ever been is 134. I just googled it. It said it can vary, but google said 44 - 147.

❤

[Hidden in reply to Ktltel]

But you have bone pain right? That can raise the alp. It’s all about the igg I believe

[Ktltel in reply to Hidden]

Sometimes. I'm on meds for my Arthritis. They're helping a lot. But yes... right now my right hip keeps going out and I walk funny and it hurts. Been to the chiropractor but, it keeps going back out. I'll be 59 in May. Par for the course I guess.

❤

[gwillistexas in reply to Ktltel]

Right. I think it does vary. Seems my drs lab range fluctuates a little. You’d think the range would stay the same.

[Hidden in reply to gwillistexas]

That depends on the lab. So it is best to use the same lab every time so that the results are from the same reference point.

[gwillistexas in reply to Hidden]

My Internist does all labs. But I notice slight fluctuations, not much. I notice everything 🤔😀

[gwillistexas in reply to Hidden]

It’s s good question for me to ask when I see him Jan 11th.

[gwillistexas in reply to Hidden]

Jan 4th I will have thyroid, CBC, lipid & cmp (comprehensive metabolic profile. GI says he will pull liver enzymes out of this test rather than run seperate hepatic panel).

[Karaliz in reply to Ktltel]

Hi Ktltel

I'm 52 and was diagonsed 14 years ago at 38 ( mother of 4/nurse from Australia). My ALP was between 280 - 700 for years before I started on OCA ( still in trial phase here in Australia). Although it reduced on OCA, it has never been below about 260.

Don't worry too much about minor fluctuations in ALP. Bilirubin, Albumin and clotting profile are a much better indication of how your liver is actually functioning. I have compensated cirrhosis and have had for 5 years - even so, only my Albumin is below normal.

Hope you don't mind my opinion being offered - best to enjoy life on a daily basis and go for the ride - we can't swim against it but we can coast with it!

Take care

Karaliz

[Ktltel in reply to Karaliz]

Thank you Karaliz,

What is compensated cirrhosis? How are you feeling and what are your symptoms at this stage?

My best to you from around the globe ❤

Stella

[Karaliz in reply to Ktltel]

Thanks Stella - and mine to you from Down Under!!

Compensated cirrhosis means the following -

"Patients with compensated cirrhosis do not have symptoms related to their cirrhosis, whereas those with decompensated cirrhosis have symptomatic complications related to cirrhosis (jaundice, ascites, variceal hemorrhage, or hepatic encephalopathy.Jul 14, 2016"

So even though I have significant cirrhosis, my liver is still able to function adequately ( that's not to say I don't have any symptoms related to a damaged liver as I do but none of the very serious complications mentioned in the description above.)

I feel ok overall although the fatigue is shattering at times and difficult to explain - as though I am walking underwater and have weights tied to my ankles. I have portal hypertensive gastropathy ( engorged vessels in the stomach ) and several GIT issues - intermittent nausea, trouble with glucose release which often makes me feel as though I'm terribly hungry ( once again due to impaired liver) , trouble with maintaining temperature so I feel cold much of the time and I've had acute pancreatitis several times which the Drs say is unrelated but I believe otherwise! Also have Raynaud's syndrome and osteopenia.

Having said all that I work 3 days a week as a community nurse/case manager and have a big family and husband who all light up my life.

I hope you're feeling well Stella

Take care

Karen

[Rockie]

Ktltel. Glad you got the meds sorted out. It took 7years of pleading with the Medical Aid in South Africa to provide the Ursofalk to me on their Prescribed Minimum Benefits,and at long last they agreed to it. Expensive bodies. What I like about our Group is that we can share our feelings. Very lonely disease this PBC. Some of the most well known Specialists I have been visiting over the years,admit they do not have much knowledge about it.

You also must have an enjoyable weekend. Thumbs up!!

[DonnaBoll Administrator]

good for you!!! Urso is always based only your weight. If that changes, often the dose needs to change as well.