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Generic URSO & Effectiveness

This is a repost from a PBC patient on the Yahoo forum. It got me thinking about different brands of URSO and their effectiveness. I'm interested in any feedback because I've been on a "generic" URSO for 8 months with no change. My alk-phos fluctuates but has never normalized. Thanks, Stella

I was diagnosed in 2011 and had been on the same brand ever since - with ALP returning to normal after only 3 months on Urso. My insurance/mail order pharmacy changed last year and I started receiving a generic brand I had never heard of (and I've heard of many, since I facilitate a local support group). ALP started going up and up and up and my doc wanted to put me on Ocaliva. I put that off as long as possible - and I actually asked him about different brands - if that could be the case (he had never heard of that happening). Well, low and behold, insurance changed again in July and I got new Rx in August and it was the old brand I had been on since day 1. Less than 30 days on old brand and ALP was dropping! I'll get checked again in a couple months and we'll see if it's still dropping. If so, I will be TOTALLY convinced that it was the other brand that was not working.

And IF that is the case, it really upsets me! You get a generic brand "assuming" ; they all have the same active ingredients, but I'm not so sure that really is the case. I can see "fillers" causing side effects, but can't understand how "fillers" would change the efficacy of the actual main ingredient. Also, if this is the case, I will be making sure that my Drs specify the generic brand that I know works for me.

Julie in TX(53), PBC diag 2/2011, most likely stage 1 (per fibroscan 5/2017)

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Hi Ktltel

this is very interesting will follow this post to see how you get on and for what other people have found.

I think some while ago Hidden made a comment about her medication and having words with her surgery so hopefully she will see your post and remind us.

best wishe

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ButterflyEi,

Yes, I also emailed Julie who originally posted this experience. I wanted to know which brand of URSO she was on. I found it interesting that her LFT's normalized while she was on one brand, but her LFT's elevated when her insurance made her get on another brand of URSO. But then, they normalized yet again when she was able to get back on her original URSO brand.

I haven't heard back from her yet. I'm really interested as my LFT's have gone up and down but have never normalized. In actuality, they've slowly gone up. They started in the 140's and went up to 180 at one point but sort of have settled in the 150's to 160's. All while on generic URSO. However, sadly, my last labs my alk-phos was now in the mid 170's.😔

Stella ❤

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Which part of your reading were rising ALP or ALT I get so confused with the different results. This site is great for help from other sufferers.

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Hi Biddyb,

My alkaline phosphatase is climbing. (alk-phos)

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Hello butterflyEi.

Yes I did cover generics and brands some time ago on this site.

I was originally prescribed the urso under brand name Urdox back in December 2010. It was 2yrs later that this pharmaceutical started producing the brand generecially. Though my body had some instinct about the tablets I was fine and it wsa only when I scrutinised the packaging did I find out it was being produced genercially. The brand had been dropped from the box the tablets came in but the tablets looked the same with the name on them. I compared the patient info leaflets for the ingredients and they were actually the same. I continued taking the generics (produced as in the UK they are cheaper to the NHS).

The tablets I was taking were withdrawn and I had to be prescribed different mgs to make up what I was taking daily as no replacement at the time. I was given a brand (Destolit 150mgs - I take 4 tablets daily) and I got on OK with these but then when my next urso was due I was given pharmacy brown bottles labelled 'ursodeoxycholic acid' and the mgs and dose. I found I had heartburn for the whole 3mths I had these tablets, so much so that I ended up speaking to my GP and since (4yrs now) I've been on Destolit. They are mroe expensive to the NHS but quite frankly I do not care. I have always had to contribute to the NHS for prescriptions (recently had an almost £250 dental bill had to contribute towards under the NHS) and I have found that a lot of medications that paying patients pay for on prescription can actually be cheaper than the charge to the NHS so paying patients are the ones who lose out.

The generics are actually with the same urso in them as brands, it is often the fillers that are variable.

I know GPs in the UK are said to prescribe a patient a generic if available and in this case as the prescriptions are wrote generically (up until receiving Destolit, my prescriptions were always wrote 'ursodeoxycholic acid' so it is whatever the pharmacy chooses to give a patient then). It's all about cost.

I can't say if our LFTs would alter with differing urso that is available, could perhaps be something to do with the fillers perhaps as some of the ingredients are in my opinion, well a bit odd. Some have a form of plastic in them even if minute quantity and a lot of the white chalky tablets have talc in them.

Out of interest though a lot of medications that we could all buy over-the-counter nowadays are actually generically produced. Paracetamol is one of the common ones and I cannot recall now what it was back in the 1970s that was the orginal brand of it. I know in the 1970s a lot of people used to buy Anadin which was a painkiller brand but not sure what it was exactly.

I think at the end of the day if you are on urso and you've no problems all well and good. I know in my case I've had brand and generics and from experience my current mgs wasn't so good in a generic form from a different pharmaceutical to the brand I have currently.

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I could not tolerate urso at all. Stomach pain, severe dizziness where I could not drive, brain fog, stomach ache and hair loss. I thought maybe I had a "bad" brand of Urso and asked pharmacy if there were different brands here in the U.S. I was told they are all the same and doesn't matter if I get it at CVS Pharmacy or Walgreens, that I would be getting same thing. Makes me truly wonder....

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Donna01,

After reading so many emails and posts about how different one URSO brand can be from another, I would sure try a different brand. Even my pharmacist said people react differently to different brands. Why wouldn't your doctor know this? Clearly they all have different fillers etc.

The brand Julie (the woman who originally had this incident) was taking was from the manufacturer "Lannett" and it was a pink and white capsule but it also was generic. But it also normalized her LFT's. The URSO she was given that quit working was from another manufacturer called Mylan and the capsule was orange and white. And her LFT's elevated. She did get back on the Lannett brand. LFT's normalized again. She's from Texas.

Stella

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I’ve been on Ursodiol from Mylan (orange & white capsule) for the past year. My elevated LFT were all well within normal range after just 3 months.

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👍Good they are working for you. Everyone is different. I'm on the generic URSO Forte. 500mg 3 times a day. They haven't lowered my alk-phos. My alk-phose is slowly going up. I'm looking to try something different. Not sure what to try.

Stella ❤

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How do I request another brand? My insurance uses mail in prescription and they use CVS....

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Donna01,

I believe you you need to make the request to your doctor in order to switch brands.

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Years ago I was on Ursofalk. I moved house and went to a new doctor but I started feeling quite unwell. After a while I realised that the only thing that was different was that my urso was in a bottle and not a bubble pack. Back to the doctor to ask if the urso I was now having was different to the original Ursofalk I had been ok with. On being told that I was being given a generic urso I asked to go back on Ursofalk. Within a couple of weeks I felt I was back to my happy self.

Now I have Ursofalk written on my prescription.

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I had exactly the same as you they put me on what i call a copy drug and i just lay in bed all day feeling like i was on my way out so went back and asked for ursofalk back and have been fine ever since and now marked named brand only.

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Interesting 🤔

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Stick pout for the brand that works for you sounds as if you have proved your point. Good luck

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I will only take the brand names because I've seen where brand vs generic can make a difference. This is from an article in Canada:

"One of the key parameters for bioequivalence is the area under the curve (AUC). The AUC is a mathematical calculation based on a graph of blood concentration versus time, and it correlates well with total drug exposure.

The AUC of a generic formulation must be no less than 80% or no more than 125% of the brand name formulation. There is international consensus that differences within this range are not clinically significant."

cadth.ca/generic-drugs/simi...

Now, I don't know about other countries but here, you might be only getting 80% of the actual medication. This is why I pay the significant extra money for the brand because I know what I'm getting and don't want to take the risk that I'm getting a drug that's not the same but meets the "standards".

I used to work at a mental health team. We started to notice that many of our clients on one particular medication were getting symptomatic; some quite ill. After talking to a few of them, they said that their pills were a different colour. After calling the pharmacy, I found out that sure enough, they'd all been moved to a generic that obviously wasn't as effective (many had to get an increase of medication to stabilize and essentially stay well). Anyone started on the generic and finding the dosage that was effective would have been fine but anyone switching to a generic had to be closely monitored.

In my opinion, if you're getting results with a certain one, then try to stay on it. Here it costs an extra $100/month for the brand but my GI specialist wants me to stay on it. I also have problems with various fillers, etc.

I agree with the others; when you find one that works, try to stay on that particular one.

Cheers.

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Lucky4,

I can't thank you enough for that important information and link.😚

So maybe I just need to up my dose... OR... (better yet) lose some weight and stay on the same dosage.

We will try to get the brand name URSO Forte first and if that doesn't fly with my insurance company then I'll try the above.

Here in the U. S. the brand name URSO Forte is a whopping $1,300 a month. Nuts. 🤤

But, if simply upping my dose or losing 15 lbs can make the difference then so be it. 🙂👍

Thank you again!!

Stella ❤

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You're very welcome. All the best getting it sorted out.

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I think u don’t eat meat... I lost 10 pounds in protein base diet ...quinoa, shrimps, salmon, steaks, eggs, turkey breast, chicken, max 3 slice of whole wheat, Brussels sprout+kale+Beens sprout with lots of different nuts and few mozzarella cheese!

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Sachin1234,

Lol... That's a lot of protein. I try not to eat more than 9 ounces of protein in a day. That adds up to "around..."approximately" 70 grams of protein per day. PBC meals and menu program stated it was best to not eat more than 75 grams of protein a day. And I don't eat dairy or gluten. My diet all in all is good. I just need to MOVE more... Lol. That's what my doctor kindly told me.

I do have slight fatigue so, afternoons are harder for me to get up and exercise. But that's not a good excuse for me. I can and should make room for exercise. 👍

Stella

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Lol I don’t eat all of those stuff at one serving or in a day.. I mean those are the things I eat regularly these days. i eat about 10 to 12 ounce of meat in a day that’s it and lots off nuts and at least 3 to 5 cups of veggie.. 🤗

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👍 Sounds like you're doing really good with your diet. That's great.

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My dad suffered with Congestive Heart Failure for a decade before his death 5 years ago. He was never one to even tale tylenol for headache and taking handfuls of pills a day alarmed him. He asked his doctor about generic vs brand name

His doctor related it to ketchup... go to the store and there are 10 kinds of ketchup, and all are made with tomatoes, sugar, vinegar... you could put any of them on a hamburger. but if you buy the brand name you are getting a different product than a generic.

They are not the same. That was from his cadiologist.

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IAmTheGlue,

Hi, and thanks for responding. I'm not sure I get that illustration. Do you mean that the only difference is the brand (name) but the ingredients are the same?

Stella ❤

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He took that to mean that they are basically the same, but some may have higher quality ingredients than others, look different, etc. Now some generic are literally the same thing as brand name. I toured a chip factory once and they were running one line into two different branded bags. Coming off the conveyor belt into two different bags. I'm not sure if medications work that way or not.

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Two day ago I was offered the generic Brand for the first time. Thankfully they had ursofalk as well and i could choose. I am glad you shared this information. For some reason generic brands make me feel very nervous as they are generally cheeper and therefor more likely to have cheeper ingredients in them. That is a bad thing with people who have a liver disease. ,

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That’s not true ! Generic must have same ingredients but quantity of that ingredients can be vary by only 10% +/- So 90% works as same as brand 10% can not be same effective as brand.. this might be the ktltel scenario

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That may be so of the active ingredients but not the inactive ingredients. If you buy a branded frozen vegetable you get 1st quality. But you buy a generic brand of same vegetable that vegetable used will be the same but not the quality. I have heard that generic medication may not have as good quality fillers as the original brand. Therefore i wont use generic brands. Its your choice. Luckily for me i only pay $6.30 for 2 boxes of ursofalk and i would save $1 to use a generic brand. To me its just not worth mucking about with. I am pretty sure i got that information from my chemist with another medication i was offered.

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Wilma active ingredient can be different and fillers as well but the effectiveness of medicine should be same not different more than 10% +/-...the one we find in market are only 3% -4% different than branded...the main reason generics are cheaper because they don’t have to do rigorous research and patient trial most of the time they are copied and made in cheap unregulated places like china, India and Mexico..

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I’m trying 😁 you got to eat little lean meat it helps to regenerate cells in bile duct and liver !

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Hello!

I started the discussion on the yahoo forum about different generic Ursodiol brands. When I was on the generic brand from TEVA I had no issues.

I changed insurance companies and was sent Ursodiol from PAR pharmaceutical. I noticed after two weeks my itching came back with a vengeace. I asked my Pcp to check my LFT's and they were a bit high. Waited 3 weeks for another check and they increased more. I have to tough this out until I can refill again I'm on a 90 day supply

My hepatologists agreed about my assumptions in the changes and wrote me a letter to show my insurance company for my next refill.

Dx. 2010 weight 220, Stage 2-3, fibroscan 2017 stage 1weight 115.

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Mely1979,

Thank you. I've been on Ursodiol generic for URSO Forte. I'm not sure where it's from. I've got a few phone calls to make on Monday.

It's been 8 months. ALP has gone up and down but in the last 2 months I've only gone upwards. Really worries me.

We will see what my hepatologist says on Monday if he's in.

Thanks so much for the Info. I sure appreciate it! Also... Great job with the weight loss!! How did you do it??? I struggle. 😑

Stella ❤

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When I was diagnosed I asked my hepatologist what can I do to besides take Ursodiol, not drink, etc. He stated, "lose weight, so that you won't get fatty liver disease" he also explained how our liver grows new cells. I had gastric bypass to prevent the fatty liver disease as I have kids and am not willing to let PBC take over my life.

It's hard still. But I was extremely happy to know I went from stage 2-3 to Stage 1.

At first I was taking 500 mg three times a day, once my labs stayed normal for nearly two years we dropped to 500 mg two times a day. Since I'm having issues with this brand, he suggested I take it 3 times a day again since my numbers increased.

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Really?? I was told only to take correct amount for my weight. I actually thought about upping my dose by 250mg just in case I had malabsorption or my generic brand wasn't up to snuff.

Others on here said that wasn't a good idea and wouldn't make a difference. Your doctor actually told you to increase your dose that much and you only weigh 115 lbs??

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Yes ma'am. Even at 100 lbs I was on 1,500 mg.

I do have malabsorption due to the gastric bypass, however, he has always been aggressive when it comes to treatment. I've mentioned the whole weight/mg issues and he dismisses them. I just do as he says since I really do not have any issues until now. I do get fatigued every now and then, when I feel it coming on I get a B-12 injection.

Otherwise I live my life normal, well normal as can be. 😊

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Has increasing the dosage had an effect on your LFT's? Are they lower?

I ask because 2 months ago I weighed 10 lbs less and my ALP was 146. I gained weight and they went up to 174. So I wondered about this generic URSO being inferior plus gaining weight... = ALP increase.

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He will repeat my bloodwork in 3 weeks and I'll know if it is working.

It's been a week and a half that my dosage has increased.

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Please keep me posted. Are you in the states?

I'm originally from California. In Kansas now.

Diagnosed last Oct. Early stage 1. Scheduled for fibroscan in Feb.

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I will be sure to keep you updated. I live in Texas

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Thank you. ❤

Nite

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What is your dose and what is your weight

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Sachin1234,

When I was in my 40's I was very overweight. I was always dieting. Now, I've lost weight since last year when I was diagnosed. I take 1250mg a day but I did take 1500mg a day earlier this year and my numbers (ALP) were better. I'm still trying to lose weight.

Stella ❤

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May be you need to stay with 1500 for a while !

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I'm gonna try that... 👍

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And try to sleep as much as u can too at least 8 hours!

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Have you tried to challenge the insurance company about the effectiveness of the meds on you? Sometimes you can ask your doctor to write a case to the insurance company and they will approve it.

Best luck.

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Janelng,

My Doctor sent a letter to the insurance company. She gave them the scenario with my climbing alk-phos. Well, they approved for me to get the real URSO Forte. I start it Dec. 11th.

Still, this past two weeks I got permission to up my generic URSO by 250mg. I just had labs today. My alk-phos has dropped 11 points in two weeks. So, we will see how it goes on the new "real" URSO Forte as I'm scheduled to have labs again at the end of the month.

Stella ❤

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Excellent!! I am so happy for you. Hope your health continue to improve. Please know that we are pulling for you.

--Jane

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hi !the same thing happened to me !i was on Urso Forte for 16 years and doing very well ,until iwas given Ursodiol back about 6 months ago! not long after that i started the itch !6 months later [i see my liver doc every 6 months] my AP were up a little and i mentionned the itch to my doc,so now 6 month later again my AP ,ALT and ASp are up! to 269!and still itching so my doc made some calls and he is trying to get me back on the original Urso !im waiting for the pharmacy to call me! I new something was not right! Im mad ,the insurance companies are messing up with my health! im in the US Michigan ! i have a wonderful caring doctor good luck to all of u and Ill keep u posted

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Was it the ursodiol capsule? That was my first med & started itching which progressed to hives. Dr took me off it.

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no its the tablet!the pharmacy called me this morning ,ican get the Urso forte ! but 3 months will cost me $800 ! thats my copay! this is highway roberry! my doctor is going to discuss that with me on monday ! the pharmacist assured me that there was no difference between Urso Forte and Ursodiol! so now Im waiting and taking my Ursodiol my copay is $30 for 3 months! ill keep u posted thanks for your comment !

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I’ve read posts here from those who feel there is definitely a difference in different brands. I wouldn’t know since I no longer take it. I take Ocaliva

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my doc said he does not want to give me Ocaliva

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If you can tolerate Urso that’s great. I had no other choice.

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well like i said with the generic brand my blood tests are going up ! ill know more about every thing monday will let u know

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Cocotte5,

Make sure they're giving you the correct dose of URSO for your weight. If your weight fluctuates it will be evident in URSO's effectiveness and your lab numbers. Especially so if you gain weight. I gained 10 lbs and my numbers started to elevate slowly. I lost weight and my numbers went down again.

Stella ❤

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well I had lost 10 pounds so ill have to discuss that with my doc !

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And what was his reason? Dr Gish, liver expert, said he expects real soon that ocaliva will rank right beside Urso.

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he did not say much except that there was some bad side effects! i guess hes going to give me another generic brand !

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Ok. Guess I’ve been fortunate to not have side effects. Hope things work out for the best.

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The worst side effect is the cost, lol! Ridiculous

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hl!so Idecided to take the urso forte for 3 months ! after that my doctor wants to do blood work to see il my enzimes are back to normal! and ill go from there and also ill be seing and talking to my doc monday i guess Illhave to work for the rest of my life.....so I can pay for my copay!

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