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Alk-phos climbing up... 😔

Hello all,

Well, got my labs back. Everything is in normal range except my AMA M2 and my alk-phos. It's elevated yet again.

Slowly over the past few months it's been climbing. It was 162 three weeks ago and it's 174 today.

I'm taking the mid range level of my URSO for my weight but I'm still within range all the same.

In 8 months on the Generic URSO Forte my alk-phos has fluctuated between 138 and 178. But now it seems to be only climbing.

I'm a bit down about it. Any suggestions? Should I try a different URSO? The "real" stuff costs... (are you sitting) $1,300 for a month supply. My generic brand simply called Ursodiol costs me $37 a month. Quite the difference. My insurance won't cover the "real" medication AND I have no way of knowing if the "real" drug will work any better.

I'm toying with trying a different Generic brand altogether... there are a few out there. I'm finding though, what works for one person doesn't necessarily work for another.

Any suggestions welcomed.

Thanks,

Stella ❤

72 Replies
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Wish I knew what to say but unfortunately with Urso I’m in the dark. ❤️

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Thank you just the same. Good days, bad days. It still was a gorgeous Fall day today. And even though my labs are what they are, I'm feeling pretty good. Trying to keep anxiety at bay.

Stella❤❤

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You’re so welcome. Was a beautiful day here also, cooler & windy but sunshine. I’m the biggest worrier I know but I’ll still say to you “don’t make yourself too worked up”. When I was first diagnosed, I was so upset my Internist gave me Xanax. That was June or July & I still haven’t taken one. I need it sometime but I hold back. I wish you a wonderful Thanksgiving. And I’m sure we’ll all eat things we know we shouldn’t but hey, we have to treat ourselves every now & then. ❣️

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Lol.... Everyday is Thanksgiving😍 Not food wise of course. That would kill me. Lol. But I guess my new motto is, Do all I can, while I can. And enjoy the little things the same as the big things. I've got a function this weekend and I'm gonna enjoy it!!

Thanks Gwillistexas ❤

Be safe on the holiday. Lots of crazy drivers out there. 🤤

Stella ❤

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Yes you’re right. Enjoy yourself wherever you go & whatever you do. Be safe!

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I so sorry wish I could help, but thank you I needed to hear your new motto. Things have been tough lately not feeling well. But your attitude is infectious and that is a good thing!!😁😁

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My alk phos was 370 at the time of diagnosis a couple months ago. I doubt I'll ever see it as low as yours. I go in for first check up since urso on Monday next week. Mine is called Ursodiol for Actigall. I take 300mg twice a day. Not sure what my ama was, I think 70? I believe it's supposed to be below 20...

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Your AMA isn’t too bad. Honey mine was 128☹️ & yes it should be less than 20. Scary. Hope your lab results are to your liking. 😊 my ALP was 240 in July. Couldn’t get in to GI until August. Started Urso & allergic. Took 3 weeks to get Ocalvia. First monthly lab ALP dropped to 179. Lab week ago it’s down to 148. Should be no higher than 126, but I’m getting there.

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You sure are!! That's awesome!! Woo whoo to you!! Ocaliva is doing the job! Prayers it keeps doing you good. 😊

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🙏🏻❣️😉

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Shadowme2,

How you feeling tonight? I know things can be worse for sure. I was just hoping URSO would be doing something better for me by now. Thanks for sharing and reminding me we are all in different struggles... Hope you're doing OK.

Stella ❤

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6 mos ago my Alk was 179. It is now 121. It has been as high as 279. I take ursodiol(generic). I was diagnosed feb 2016. My other levels came down within three mos on ursodiol but not the alk p. It has taken 1 year and 9 mos. for it to return to normal. I take milk thistle too. Hang in there.

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Hope mine will come that low. 1st lab my alt & ast were normal & this last lab they were both few above normal. Strange.

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Gwillistexas,

I'm hope they're keeping an eye on things. Keep us posted. 👍

Stella ❤

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They are. Lab again next month.

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Thanks Ellewoods33,

That's great news! What brand of Ursodiol do you take? Do you know the pharmaceutical company it's made by? It may not say on your bottle, but only in the information material they give you with it. I realize what works for one person may not work for another. I just gotta try something different here soon.

Thanks for your reply and encouragement ❤

Stella

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I will ask my pharmacist and get back with you next week. I take ursodiol 500 mg 3 times a day.

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My Alp was 625 at diagnosis. The last labs it was at 225. I'd be tickled pink to be under 200. Labs can fluctuate. The hep said they don't care too much about the actual number but if I am stable. Which they say I am.

Pam

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4pjx_,

Awesome!!! How you feeling tonight?

Thanks for your reply ❤

Stella

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I feel pretty good tonight, thanks!

Pam

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4pjx_,

👍😊Great! Good to hear! Have a good night.

Stella ❤

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The point you make about generics versus true urso are really interesting. I felt like I had the best result with urso when I was on the non generic - I’m going to ask my doc about this. It’s great that most of your labs are in normal range but if alp is climbing maybe the urso impact has stalled and you should try ocaliva? That’s where I am and I’m rarher itchy but it seems to be working .....keeping you in my thoughts! Happy thanksgiving.

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Thank you Ottley3,

Can I ask why you stopped the URSO and are now on Ocaliva?

Stella ❤

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Hi, missed this. I’m now on ursodiol and ocaliva. Reason - Initial improvement on urso stopped, flattened and then alp started rising.

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Ottley3,

What brand of URSO were you on before you stalled out? Were they pills or capsules?

How are your numbers looking now since on Ocaliva? Maybe you've already shared this. So many posts, they're beginning to run together. Sorry.

Thanks,

Stella❤

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I'm classed as a no responder to the uso my alk always stayed around the 200 mark so because of this I'm on a clinical trial at the moment and all bloods are within normal range for the first time in 5 years

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That's wonderful! What do they have you on?

Stella ❤

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The drug is mbx8025 at the moment results are very positive

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Kimohoebe,

That is such good news!! Hope is wonderful! At least there are options. Are you in the U.K.? I wonder if they have it here in the states.

Stella

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Yes I'm the uk. Think it has started in the us just 36 people all together I think

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Kimphoebe,

Please keep us posted. Any side effects? How are you feeling?

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Hi just got back from hospital for trial all bloods normal. Fatigue and joint pain still bad but professor said there's nothing they can do for these symptoms. Back in 6 weeks for more bloods and tests. Well normal bloods are a good start.

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Thats great news!!! Did they ever offer you Ocaliva? Just wondering why you choose the clinical trial over the new drug for PBC? If it turns out I'm a non responder to URSO, just trying to see what my options are.

Stella❤

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No wasn't offfered ocaliva. This is the 2nd trial I've done. This one has been extended for another 44 weeks, be interesting to see what bloods are like today should be up on my patient portal by Tuesday.Hope you are keeping well. Hopefully you may be offered a trial they mostly enroll nonresponders.

Heather xx

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Kimphoebe,

I hope you get great results! Please let us all know how it goes.

Any side effects so far? Did they tell you what to expect as far as side effects? Anything scary???

I'm assuming there was also a placebo in this trial. But it sounds like you aren't in that group.

Stella❤

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Hi

It's an open label study started on 5mg which made itch worst for a bit then up to ten mg but had bad reaction and all enzyme shot up really high so stopped drug for a week or so then started back at 5 mg. everything good now so looks postitive.

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Dr says there are no differences between generic and branded medicines so both should work same but I’m like you in certain type of medicines..like for my sinus headache I have to have sudafe-pe other generic brand won’t work even though they have a same ingredients .. people say it is a psychology in our head that makes us believe branded is better or functional than the generic and psychology does help in functioning medicine properly in our body..if you can afford go for a brand urso try it couple months and let see what happens..🙏🙏🙏🤗

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Sachin1234,

Yes, I'm not sure which one to try. They are all crazy expensive... I'll see what my hepatologist has to say. My GI doctor is filling out a request form to send to my insurance company to see if they will allow me to be covered for the original drug.... Or a different original URSO drug. I'll have to do research and find out which generic or "real" drug is having the most successful results in keeping patients LFT's down. Then maybe I can try that one out.

Stella

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Mine is ursodoil 500 mg mfr: glenmark p through cvs Caremark !

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How are you feeling lately? Have you been good?

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Actually I’m doing good lab work wise.. you know I haven’t stop drinking even though in moderation.. problem im facing are common and tolerable like dryness, fatigue and weak digestion if I eat unhealthy food and body getting hot!

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Sachin1234,

That's good to hear.👍Takecare of yourself and hopefully for all of us we can hopefully be problematic free for many years! 😊

Stella

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Generic manufacturers are allowed a 20% variable in their prescription drugs, so you may be getting more or less of the medication in different generic brands. Also different manufacturers use different fillers. According to a doctor at the FDA there is no way for us to know what fillers I'm allergic to because there is no way of knowing what fillers are used. I have also had severe reaction to a name brand, but can take a generic with no problems. So, one brand may work better for you than another. I recently read that in some cases, the insurance company will give you a break on the name brand if your doctor says you simply cannot tolerate the generic medicine.

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I also take the Ursodiol 500 Glennmark through CVS pharmacy. My Alk Phos is 365 at the last test, down from 1115 in August but up from 280 in October...

I hope that they get it straightened out for you Stella. ♥️

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IAmTheGlue,

Thank you. ❤

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Ktltel,

I was diagnosed in 2007 and my AK was quite elevated but got under some control with the brand URSO. I had a fever post-surgery so that's how it was diagnosed. I got a specialist, started URSO and at the time was not concerned that my ALK was around 300. However, over the past couple of years, the numbers kept going up to the mid-400's so I was told that I'd shifted from being an URSO-responder to being a partial URSO responder.

Due to this, I was told about Ocaliva and waited a year for it. Finally started it a couple of months ago and I really don't like it. Now, I'm taking it 5 mg every second day but my AK has reduced from 425 to 368. So, that's something. I'd rather not take it due to the side effects (get none from the URSO) but as my numbers are decreasing, it's just not a good idea.

In terms of your question about the generics, if you get turned down for the brand name, maybe talk to your pharmacist and see if they have any feedback for you.

All the best with this. It's all pretty challenging, isn't it?

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Stella,

Would you let me know if you have any luck with changing generics? I am in the same situation as you with increasing ALP. I am also on Urso Forte. I was diagnosed in March this year and started Par Pharmaceuticals imprinted 413 at Walmart. My ALP was 410 in a month it fell to 208.

I had my prescription refilled at CVS pill imprint U11 by Glenmark generics. My next ALP was 243. I switched back to refills at Walmart (Par pharmaceuticals. My next blood work was ALP at 238–only slightly lower. I am due for bloodwork next month. Since so much is unknown about PBC I think it would be good to look at every possibility that might affect the progression. Is there anyone on Urso Forte whose ALP has normalized? What kind are they on? Maybe 2 of the 250s is better for a 500 dose. There has already been some discussion about nausea with the capsules versus the tablets. Etc.

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Hello Twojer,

Nice to meet you. Im in Kansas. I'm having some anxiety about my ALP climbing. Being that it's the holiday weekend none of my healthcare people are working until Monday.

I have a really good PA who will order anything I want (prescription wise) but, when she ordered the "real" URSO Forte (because I wanted to give the brand name a try before switching to another generic altogether) and i went to my pharmacy to pick it up, well the price was astronomical!! AND my insurance wouldn't cover it. ($1,300) a month.

I also have no clue which alternative generic to try. I left an email with my hepatologist and unfortunately it's gonna be a long weekend. I'm hoping he will have some ideas as to what I can do or maybe another brand to try.

I never read about the capsules causing nausea though. My generic UR SO Forte is made by Allergan. I think it's in PA.

Stella❤

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Ktltel...I took 300 mg capsule mfg by LAN & had no nausea, just those darn hives😊. Doesn’t really matter since I’m not taking ...just saying...😀

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Gwillistexas,

Did you mean the Lannett brand when you said LAN?

And it gave you hives huh? Yea, I worry about making a change for those reasons too. I'm tolerating this generic URSO Forte....but unfortunately my number (ALP) is climbing. 😣

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It says 300mg Cap LAN

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Gwillistexas,

Pink and white capsules? That's probably it.

Thanks

Stella❤

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Yellow/white

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Gwillistexas,

Hmmm, who knows, it may be them. I don't know. I may Google and see pictures of those. She specified Lannett though. Lan maybe another company.

Thanks

Stella❤

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Oh...I still have a bottle. Looked again & yep, pink/white with lannette written on it. Sorry😁.

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Thanks...that's them.

👍

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🤗

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I wonder if they come in 500mg capsules.

I know how that feels. I'd hate to have to purchase the brand name URSO FORTE.. UNREAL expensive, only to find out I'm not responding to them. You are correct...$$$ down the drain. But if it turns out that what im having is a malabsorption issue, that's $$$ down the drain too.

Stella❤

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Had not looked at them in so long. All I know is I have a $70 bottle wasted.

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Oh yea, HUGE whelps

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Twojer,

There is a Yahoo group for PBCers and many on Facebook too. But, im not on Facebook and had trouble with my cell phone getting on and maneuvering around in the PBC digest Yahoo group. I love this group here on Healthunlocked. I've learned a lot here. Most are across the pond as you probably know, as this is where it's based.

As far as the PBC digest Yahoo group, I can read their posts but I can't post anything myself on that forum.??? But I did read this post (below) from a PBCer named Julie. She's in Texas. She's the one who's post I originally read on the PBC Digest Yahoo group who got me questioning brand name vs generic URSO. (Reposted her post below)

(Hi Stella,

I take the Lannett brand of Ursodiol. It IS a generic and it's 300mg capsules (Pink & white). The one I was taking that I believe did not work was by Mylan (orange and white capsules). Like you, I had elevated Alk Phos for several years, before diagnosis (at least 6). My regular Dr. didn't really question it until ALP, ALT and AST were all elevated. Put back on Lannett brand, my ALP started dropping right away (blood work after one month on it).

Do you know if you are taking the right dosage? You should be taking 13-15mg per kilogram of you weight. So, your weight divided by 2.2 times 13 should give you the minimum amount you should be taking.)

Twojer,

So that's the brand (Lannett) that worked for her. Apparently brought her numbers back down. Although another PBCer on here said they do just fine on the Mylan brand (Orange and white capsule) So.....it just all depends on our own physical or chemical makeup I guess.

I plan on sharing this will my doctor as well. I'm just not sure if I should peruse a different generic brand....or, try the brand name URSO Forte first AND that's if my insurance will eventually cover it.

I do know I don't want to wait weeks to switch things up. The consensus is, the earlier you can nip progression in the bud, the better.

Stella❤

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Stella

Thanks. I have checked the PBCers group on Facebook from time to time. I did come across a post there tonight that said something like “from what all I’ve read there is an absorption problem with the tablets “. She went on to say she was taking a capsule and then her pharmacy started carrying only the tablet. Her liver enzymes started climbing. She got her doctor to write a prescription for the capsules and was going to see on her next blood tests if there was a difference.

Are there more percentage-wise non-responders in the Urso Forte group ? What are the percentage of non-responders in the capsule group compared to the tablet group? Who might have the answers to these questions?

This whole response/no response thing is strange. Why do some people normalize and some don’t? Why do some respond partially and some not at all?

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Twojer,

Those are excellent questions. I wonder all of that myself. I can also appreciate the absorption theory too. I believe I've suffered from malabsorption in the past and probably still do. Never had it professionally checked out though. I've actually thought about that and mentioned it to my husband just this afternoon. lol

Are capsules easier for the body to absorb? I guess that's something else to think about and talk to my doctor about too.

Maybe the next step for me is to switch to capsules. I don't know if they come in 500mg form. Or...maybe I need to actually be checked for malabsorbtion first.

At least there are avenues that still need to be checked out. Ive got more research to do. I do take pills for RA called Sulfasalazine. They are big oval hard yellow pills. My RA is under control so....I guess I must be absorbing those well enough. But, all these drugs have different fillers too and there's a possibility I'm not absorbing these URSO ones well. I just really don't know. 😞

I'm sorry, it's late. Please share anything else you come across on the subject. I will too.

Thanks,

Stella❤

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I just looked. All I saw was tablet. Yea, they are definitely overpriced. But we have to have it so we’re at their mercy.

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Thanks for checking. ❤

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Try ursodiol from glenmark which u get it in cvs

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Hi Ktltel; I feel that the non generic is the best, but my insurance won't cover it, soooo I make sure that I get the same manufacturer---- my script is for ursodiol 500 mg , manufacturer is Glenmark Pharma. Good luck!

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Thank you. ❤

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Ktlyel

Just wanted you to know my dr says it’s quite normal for all-phos to creep up a little now and then. Mine does. No rhyme or reason to it. I don’t think the different Urso will change that. I have the mind set of just going by how I feel. I have felt really well with all-phos higher and then felt poorly and was surprised to see my all-phos was almost in range. Just my own experience. Wishing you all good things.

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LorraineLouise,

Thank you for your reply. Having labs this morning. Hope you're doing well.

Stella 🙌

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That was happening ti me, my gi Dr increased my dosage 2 300mg twice a day and mine had not increased but actually decreased and had stayed level for 3 years now

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Katjean16,

So are you actually taking more URSO than what your weight requires? You stated your GI upped your dose?

Stella ❤

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