2 weeks on "real" drug URSO Forte. Changed from generic. Update...

[Ktltel]

Hello PBC family,

So my labs a month ago showed my ALP was slowly going up. My doctor agreed to take me off of the generic URSO and try me on the real URSO Forte. After a week of phone calls back n' forth to my reluctant insurance company, they finally agreed to cover me taking the real drug. So, my most recent labs showed an improvement. My ALP went from 172 or 174 (I can't remember exactly) to 162 to 157 as of Dec 28th. Small decline, but once again..I'll take it!

Everything else is in normal range except now my AST is 2 points "below" normal. I don't know what that means. And my magnesium is 1 point over the high end. Don't know what that means either. My doctor didn't seem concerned about it.

I'm feeling OK. Slight fatigue at times but I can't complain. I've gained 10 lbs!!! Blast!!! Man, I love to cook and eat!!! Plus had my 29th anniversary on the 17th of December and my dear mother in law (whom I like to call... Betty Crocker) baked a huge batch of goodies for her son, and well... I just failed completely at exercising my will power. Actually I just failed where ANY exercise is concerned!!! 😣

My doctor told me the more weight I lose the better it is for me and PBC, and I guess for any of us with PBC who are overweight that holds true.

So, my next appointment is with my hepatologist on March 22nd. I only see him once a year. Everything else is through my GI. I'll be having labs again the end of February. My Fibroscan was cancelled as the machine was down and the nurse called to say they are in the process of rescheduling everyone once it's fixed. So hopefully I can have that test done before I see my hepatologist in March.

My goal now is to eat right, exercise, and lose weight!! Lol... Just perfect for it being January! I'm not one on making New Years resolutions so, I'm just gonna do the best I can... small doable goals.

Here in the U.S., and especially here in the Midwest, we're under a deep freeze!! It was 14 degrees below zero (Fahrenheit) the other night!! We had a little snow too but mostly just fffrrreeezzziinngg!! The photo is in the evening a couple of nights ago taken in our driveway. It was an awesome moon to behold. My shot didn't do it justice.

Something about creation brings a sense of peace & calm to my soul. Whether it's a beautiful sunset, or watching my dogs play in the snow.... I'm hoping and praying for those kinds of moments for us all..and more often. Especially dealing with this disease and any other ailments many of us have. It's the little joys. ❤

Stella

[Hidden]

I take the real Urso too. I’m glad to hear that your labs are declining. It’s freezing here in Florida as well. Stay warm my friend. My next apt is in April. I still haven’t heard back from my dr regarding my perfect enzymes. I’m praying to begin to taper my prednisone again. I’m still taking 10 mgs. My last visit he said that he wouldn’t taper me until August. He said that he wanted me to stay at 10 mgs until August. That will be one year of normal enzymes

[EileenUSA]

Hi Stella,

Glad you got the brand name to try. Hoping that numbers continue to stabilize.

I am getting 6 month bloods done tomorrow... ugh..I admit my mind starts imagining that labs will be bad.... I tell myself that things could very well be stable but I dunno- I hate being tied to the numbers ... every 6 months being reminded... just when I start forgetting I have this darn disease 🙈

i hear you on weight loss- it was the strongest "advice" my dr. gave me. She told me to lose 10 pounds... which I did and then some- went down 2 pant sizes... but now it's been creeping back on. Grrrr... I gave up the potato chips and other addictive sugar snacks... but I've been eating more snacks at night - late..

weather isn't helping for sure- stuck inside much more for 5 days -- temps during day at 3 degrees..

Hugs and encouragement to all!

[Ktltel in reply to EileenUSA]

EileenUSA,

I know how you feel. I get nervous every time I have labs. I also know that feeling of "almost" forgetting I have this disease too, but then stuff happens and I'm reminded and slapped back to reality. Ugh!

I struggle with weight. My labs were at their best when I was 25 lbs lighter back in May. I'm am really working at it though. ❤ it's harder the older I get.

Keep us posted please how it all goes tomorrow. I'll be thinking of you.

Stella

[Hidden]

Stella,

That's a stunning photo of the landscape & a beautiful picture of you.

Don't worry about a 1 point off the labs here & there. It is so slight & probably fluctuates. Bet that is why your doctor is not concerned.

I see my hepatologist 4x a year & he does all my blood work for me, including tests that I think my other doctors need.

I also struggle with my weight. I think I need to lose 10-15 pounds, but my hepatologist thinks I am too hard on myself.

It has been a challenge getting back on track with the exercise due to my knee injury sustained while running. I am slowly getting back on track. I would like to lose at least 10 lbs though my hepatologist thinks I am fine because I eat such a healthy diet vs the typical American.

We should all share tips & compare results to keep us motivated on weight loss & healthy living.

We are due to have a snow storm tomorrow. They already announced the closure of nyc public schools.

Stay warm!

[Ktltel in reply to Hidden]

Nycgirl2012,

I saw that on the news. Be safe... and stay warm. Winter has definitely come in like a lion!

Stella ❤

[Yankeerose3 in reply to Hidden]

Love to hear what you eat for your healthy diet... so hard to do. Hard to know what to eat. Any recommendations on snacks, too?

[Hidden in reply to Yankeerose3]

I eat healthy 5 days a week & let myself splurge a bit on weekends or social occasions.

Typical weekday fare

Breakfast

Coffee with almond milk or skim milk, no sugar

1) Organic steel cut oatmeal with fresh fruit or raisins/cranberries, coconut flakes, walnuts or almond butter & cranberries or banana slices

2) Fried egg with 1 slice Canadian ham (check labels for no nitrates) & 1 slice of high fiber whole wheat bread (I like Trader Joe's)

3) Organic omelette with veggies or egg white omelette

Lunch

1) In the summer, mostly organic green salads throwing in different combos of arugula, spinach, baby kale, or spring mix, romaine lettuce, carrots, tomatoes, mushrooms, diced apples, dried cranberries, walnuts, sliced almonds, a tablespoon of feta/goat/blue cheese. Salad Proteins: tofu, poached wild Alaskan sockeye salmon, grilled chicken breast, veggie burger, anchovies, seared scallops, seared ahi tuna

Dressing: organic extra virgin olive oil, balsamic vinegar

2) In Fall/Winter: grilled chicken breasts with veggies: broccoli, carrots, roasted root vegetables: squash, sweet potatoes, turnips etc.

3) Tofu stir fry with veggies & sometimes with a bit of organic ground turkey.

4) Organic turkey meatballs with whole wheat pasta or sometimes lemon pasta

5) Organic turkey meatloaf

Dinner

1) Baked fish & veggies in parchment paper packettes

Fish: Wild Alaskan Salmon, Wild Norwegian Sea Perch, Wild Pacific Cod, Wild Ahi tuna, flounder

Veggies: broccoli, string beans, carrots, cauliflower, mushrooms or whatever veggies I have on hand

I, sometimes throw some lemon slices & olives on top. Also season it with herbs, a bit of sea salt & pepper. Sometimes I add a splash of white wine.

Baked in oven for 12-13 minutes depending on thickness of fish fillets at 400 degrees.

2) Cauliflower fried rice (not rice...it is riced cauliflower combined with peas, carrots, onions & scrambled eggs)

3) Veggie stir fry with tofu

4) Veggie stir fry with chicken breasts

5) Veggie dumplings

6) Mussels in white wine sauce

7) sushi or sashimi (my hepatologist approved this. It was one of my first questions to him because I 💜 sushi)

I always eat a lot of veggies for lunch & dinner, fills 1/2 my plate.

Snacks:

Bananas

Apples

Organic plain yogurt with fresh fruit

Hummus with carrots or celery

Nuts (but you can't have too many...high in calories)

I also brew my own Kombucha tea. I asked my hepatologist whether that was okay & he approved.

I also have 1-2 pieces of dark chocolate daily. I 💜 European chocolate so I mainly splurge on that.

On the weekends, I don't go too crazy with the eating but I eat a bit more decadently because I dine out.

Except for the sushi/sashimi, I make all my weekday meals & bring my lunch to work.

[Yankeerose3 in reply to Hidden]

Ok. Thank you very much

[butterflyEi]

Hi Ktltel

That is a fabulous photo, apparently it was a super moon known as a wolf moon, well that is how it was explained by a UK television presenter. In the UK we have had some beautiful sunsets but mostly at this time of year the skies are just dreary and grey.

So glad to read that your change in meds has you going in the right direction. Losing weight is such a hard thing I managed to lose about 15 kilos (33lbs) but have been stuck but plan to make a concerted effort again this year. I have found taking out bread, potatoes and pasta is helpful. I tend to make my own soups for lunch so I know what goes into them and evenings have meals with lentils and beans which I find filling. I have just started eating sheep's yoghurt as I am not keen on goat products, it is organic and has the necessary bifidus etc.

Happy New Year to you - keep well.

[Ktltel in reply to butterflyEi]

Thank you ButterflyEi,

How are you doing?

Stella ❤

[butterflyEi in reply to Ktltel]

Hi Ktltel

Stella,

not bad thank you, kind of you to ask, as they say could be worse!

take care

best wishes

[Ktltel in reply to butterflyEi]

ButterflyEi,

That's really good. Glad to hear it. ❤🙌

Stella

[jemlola]

Hi Ktltlel

I was diagnosed with PBC in June 2016. In reality I had probably been unwell on and off from at least 2011. I had a number of health investigations in that year that remained inconclusive. So I struggled on with fatigue, low mood and occasional bouts of feeling really unwell with digestive problems and disturbed sleep.

I took the diagnosis quite hard to begin with as I was recovering from an operation to remove my gall bladder. I had kind of hoped that the operation would resolve some of my health issues, and not as it turns out identify what the underlying condition was. The saving grace in all this was that I found the PBC foundation and Health unlocked and found a community of people who could relate to how I felt and more importantly could offer really good advice and suggestions as to how to manage my on-going health.

I asked my doctor to refer me to a dietician as my bone scan had identified that I had osteopenia. The dietician offered me some really good advice. I have had struggles with my weight and at times was really hard on myself about it. I look back now and think that especially before I was diagnosed I think I was in a permanent state of exhaustion, running around trying to keep on top of everything and never really managing it. This made me feel inadequate. I look back now and think I must have been running on an empty tank and therefore my body was constantly craving quick energy food to make up for constantly feeling tired. Physical exhaustion leads to mental exhaustion and with low mood it is hard to put yourself first and do or sometimes eat the right things.

Before diagnosis my diet had been decreasing because of digestive disturbances, I had taken to eliminating some things from by diet. So I had started to lose some weight almost by accident. After diagnosis I think I was so freaked out about putting undue strain on my liver I was almost frightened to eat anything. However I did change my diet and for me I gave up alcohol not because my consumption was significant but because it just felt right for me. I had walked for exercise before and just increased that and re-joined a yoga class.

I have lost weight and do feel the benefits of it. I am perhaps a little less strict as I was initially regarding some foods that I know I probably should not such as chocolate. I have probably gained a little weight over the Festivities but I am keen to try to get it off now we are in January. I think the key is to be kind to yourself, make small changes in your diet, explore foods that you overlooked before in favour of things less healthy. Any exercise is good it does not have to be in a gym, just going for a walk or climbing steps, even housework every bit counts. I go to a gentle yoga class and this is great for balance and just my well-being. I think yoga has also been a gateway for me to try meditation which I find really useful for anxiety, dealing with pain and sometimes with sleeping.

I think I have read that one of the side effects of Urso is slight weight gain. I would agree that there have been times when I have been really watching my diet and exercising and the weight loss has been hard or disappointing for my efforts. For me it is about remaining positive in the face of uncertainty. So I think eating a bit healthier, moving a bit more, finding a bit of time to reflect and acknowledge my feelings have made me feel better physically and mentally. I saw my Consultant in December there is no massive downward slides in terms of my bloodwork numbers, but I feel ok and for me that is what matters most. Like most people on here my journey with this condition has not been an easy one. I had to give up a full-time job and now actually work 2 part-time jobs with a work pattern that allows for me to rest. I have tried to reduce the impact of stress on my health by accepting some stress but balancing it up by recognising the importance of looking after my health, finding time to do yoga and the things that I really enjoy.

Good Luck with your healthy new year.

xxx

[Ktltel in reply to jemlola]

Jemlola,

It sounds like you have come to terms with all of this and have a good plan to keep moving forward. That's great!!

When I was first diagnosed Oct. of 2016, man, I was scared straight. I researched everything, went on a super strict liver friendly diet, lost weight and felt better. Even my numbers looked better. Now I'm 1 1/2 years into this diagnosis and I guess I've just let my guard down. Old habits die hard as they say... but that's a lame excuse.

Thank you, and everyone who has, and continues to share their health/diet protocol here on this forum. I learn so much everday, and it gives me added impetus to get back on track and take better care of myself. I know how important that is. I just have to follow through like I did when this "new normal" started.

Thanks for the encouragement.

Stella ❤

[Ballymahon2]

Delighted to hear your lads are declining congrats on your wedding anniversary you look fab in the photo keep up the good work you are doing great and its so important to be positive happy new year

[Ktltel in reply to Ballymahon2]

Thank you Ballymahon2,

Hope your doing well too. ❤

Stella

[Ottley3]

Great news Stella! Stay well and happy!

[Ktltel]

Ottley3

Thank you. I'm trying... How are you doing?

Stella ❤

[Wilmahair]

Hi Stella.

Love the pic of the sunset and I have to agree you look amazing. So glad to hear you Alp is coming down.

It's too hard for me to imagine you going through such cold weather as we are swealtering in 40+ degrees celcius daily at present.

Any way I hope you had a lovely Christmas and all the best for the new year. XoxoX 💞

[Hidden]

Dear Stella,

I am in Taiwan and my wife has PBC for 35 years. Whta is the difference between generic URSO and URSO Forte. Appreciate if you can send the photos of their paper package. My email is [e-mail].

Herman

[Ktltel in reply to Hidden]

Hermanc,

The pills themselves look the same. I don't have any paperwork for them. One bottle (generic) says Ursodiol. The other says URSO Forte. They are both 500mg pills.

I was not responding to the generic drug as expected. I had read that in some generic formulations of drugs, only 80% of the active ingredients are required, the rest being various fillers. In some cases, patients were responding more positively to the actual drug. So, my doctor thought we should give the actual drug a try. I've been on the URSO Forte for about 2 weeks. My numbers have lowered slightly. More time is needed however to see if this continues to work favorably in my case.

A few others on this forum have had similar experiences with generic vs the actual drug, and the actual drug producing better results. Others have responded just fine to the generic drug as well. Everyone is different. But as I said, more time is needed to really see if the actual drug continues to stabilize my numbers.

Stella

[JaneIng]

Ha, never heard of conventional doctor checking Magnesium level. My impression is that 90% of us have magnesium deficiency and you won't have too much of because it won't accumulate in your body. My functional doctor did check my magnesium level in the cell (not blood) and I had deficiency. I took magnesium supplement and am fine now.

So glad you are going to the right direction.

Best wishes,

Jane

[Tootoot]

I live in Canada and it’s been very cold here too. I join a online program called Whole Life Challenge. It is a 6 week program that is also includes scoring. It addresses whole life style. Eating, exercise, sleep, stretching, water and a special life style which changes weekly. Ie meditation or not having any electronics while you eat. There are 3 levels. Kickstart ( good for unhealthy eaters) life style (no dairy , grains or processed foods) and Performane for the keeners out there. It has change my life and many of my friends. It is a 6 week program on then 6 weeks off. Check it out. It starts jan 20th. It’s played by people all over the world. Great support and loads of great information.

wholelifechallenge.com/

[Ktltel in reply to Tootoot]

Tootoot,

Can I ask, do you have PBC?

It's not that I doubt eating and drinking right, exercising and reflection in the form of meditation is good for you. Plus putting it out there for ones in the form of a challenge, a competition so to speak, could be an added stimulus for some. But being sick with PBC, well many of us suffer with fatigue from this disease. That means having to push ourselves daily just to do necessary things. On some days just getting out of bed is the hurdle lol. Thank goodness for me that's not too often but I know for some it is.

I'm trying to follow a somewhat similar protocol but without the competition aspect. There are other online sites out there, (FREE ONES) designed to help ones do the very things the Whole Life Challenge is recruiting but without the $50.00 fee. It's just I have enough $$$ going out toward medical bills and medication as it is right now. Thanks for thinking of me all the same.

Stella ❤

[Tootoot in reply to Ktltel]

I was diagnosed in nov 2017. I don’t have any symptoms. I go for my first bloodwork on Monday and I hope my enzymes are going down. I hope I am remain fortunate enough to continue with no symptoms. My heart goes out to those who struggle with this disease.

[Ktltel]

Tootoot,

Keep us posted. Hoping all goes smoothly and you get great news!

Stella ❤