Weight Loss

[gwillistexas]

I hope my pic attached. You see why I’m concerned about weight loss and ocaliva? Plainly stated from Intercept about reporting weight loss to Dr. What’s these guy’s problems anyway. Do they just ignore warnings...

[Sona_akb]

Hi gwillistexas

Have you experienced weight loss?

[gwillistexas in reply to Sona_akb]

G’morning. Yes I have for 2 years

[Sona_akb in reply to gwillistexas]

I’m so sorry that you feel uncomfort about your weight . This is my concern too. Because I’d use to be thin all my life and now, realize that my disease may make me more thin😢 I don’t take ocaliva, only urso. No weight changes yet

[gwillistexas in reply to Sona_akb]

Thanks. I’ve been small all my life too. I’m learning to try and accept the curve balls we are thrown sometimes. Not an easy acceptance though. 😊

[Sydgal in reply to gwillistexas]

I am suffering from weight lost because of this disease too..I have always been slim too but have recently lost a few kgs .. now i only weight 47kgs!! Just can’t seem to get any weight back on !! So I totally understand how you feel .

[gwillistexas in reply to Sydgal]

G’morning! I have actually gained 6 lbs. I think it may be the 30 gm protein boost I’m drinking. How many lbs is 47 kgs?

[Sydgal in reply to gwillistexas]

That is great how you gained some weight, can i ask what is the protein boost your drinking? I am willing to try anything to gain some weight right now.

[gwillistexas in reply to Sydgal]

It is Boost Max. Only 1 gm sugar. 30 gm protein. A rep had left 4 cases with my dr’s Nurse Practitioner. I saw her in August and she gave it all to me. Thing is, I’ve not been able to find it in the store. I only find 20 gm which is what I had been drinking but it has much more sugar. She wanted me to drink one between each meal, 3 a day. I had to stop the one between lunch and dinner because it filled me up. So I had 2 a day.

[gwillistexas in reply to Sydgal]

If I looked at conversion chart correctly, do you weigh 90 something lbs?

[Sona_akb in reply to gwillistexas]

Some people are concerned about being overweight and may need to do a major surgery for weight control. I know being underweight is also bothering, but may be less unhealthy

[gwillistexas in reply to Sona_akb]

I agree. It’s sad🙁 we little ones will be just fine😀

[Sona_akb in reply to gwillistexas]

I make calorie rich smoothies every night. This’d helped me alot.

[Annac]

Hi. I am in UK. and have been diagnosed with PBC for 13 years. Recently my blood numbers became cause for concern and after tests I have been given Ocaliva to support Urso. I am being monitored by telephone. Initially I took Ocaliva every other day. and then every day over the past month. I have had Nausea every day. I am changing the time of day I take it to see if the nausea reduces. I guess the medics are still "researching". Of course nausea makes you want to eat less ? hence Weight Loss ? It is so worrying.

[gwillistexas in reply to Annac]

G’morning. I’m sorry you have nausea with OCA. I’ve had no side effects. It’s just strange to me that my weight loss started shortly after starting it.

[mrspeffer2 in reply to gwillistexas]

Just curious...are there any benefits you are having with OCA that outweigh the side effects? You know me, I see side effects and go running the other way. As Joan Osborne said in her hit song....."What if the cure is worse than the disease". Yes, time for something to change for you. From what I understand, you really do not have any weight you can afford to lose. Please let me know what I can do to help you. Be well

[gwillistexas in reply to mrspeffer2]

Hi there! Ocaliva has kept my numbers down and apparently is keeping my bile flowing so my fibrosis doesn’t continue building up in the ducts. Those two are a big plus to me. Aside from weight loss, I’m perfectly content with ocaliva. You’re right...no lbs to spare😊 but hey...I’m running full throttle 🤪

[mrspeffer2 in reply to gwillistexas]

I'm so happy to hear there are no other problems and that you actually are seeing benefit of taking it. Let me know if you need any tips for packing on the pounds! I'm working on shedding the ones that mysterious came on when i got back from vacation. Might have been a delayed reaction from the steroids for my sinus issue...wouldn't want to blame the nightly pints of HagenDas strawberry ice cream...Anyway, think of you all the time out there in Deep Texas. Be well

[gwillistexas in reply to mrspeffer2]

Sure, tips welcome 😀. I’ll check out the calories in HagenDas and compare to Blue Bell🤣. I eat ice cream most every night.

Thanks for thinking of me. Will you guys be moving any time soon?

Chat soon. 😊

[mrspeffer in reply to gwillistexas]

When my mom was unable to keep weight on, I source a hi calorie, high fat protein powder that was only about 8 oz.. in volume. Made it with half. and half. Also, while bean soup in chicken broth. I had to find foods that packed a lot of power as she couldn't eat or drink much.

I want to live, but he wants to wait and see what happens with rates, economy, elections. We'll stay here for another year or so

[gwillistexas in reply to mrspeffer]

Sounds like you took special care of your mom. I’m sure I’m about to get more serious about protein intake. May even consider seeing a dietitian. Will see. I know you were excited at the possibility of moving. But I agree on watching the economy. We never know. But when you do move, it will have been worth the wait😊.

About to have a cup of ☕️ and fix dinner.

Take care. Chat soon🦋

[mrspeffer in reply to gwillistexas]

Enjoy the evening g. Made game Henson and a salad

[mrspeffer in reply to mrspeffer]

Noice cream for ne this week! Bummer

[gwillistexas in reply to mrspeffer]

Thank you! Hope you do the same. Dinner sounds good. Enjoy!

[Sona_akb in reply to gwillistexas]

I started healthy diet recently (about a year). I cut out meat and replaced it with chicken and fish. Today I was warn that my blood showed early signs of iron deficiency 😂😂😂 I mean maybe we small people shouldn’t jump into diet and just eat whatever we want.

[Firefly33]

I’ve been taking Ursodiol since Oct. 2012 when diagnosed with PBC. It is “said” by patients to put weight on you. It did that to me. About 15 extra, unneeded pounds. Then in 2017 my doc added Ocaliva to my treatment plan. It has helped the Ursodiol to work better....bringing down my Alk Phos. Into the normal range for the first time ever. I have not experienced any weight loss while taking Ocaliva. I wish I did! I am hypothyroid, and have always been overweight by about 40 pounds. Sigh.

[Firefly33 in reply to Firefly33]

And I should add.....I have not experienced any unpleasant side effects from taking Ocaliva. I had more (digestive/diarrhea ) problems when I started taking Ursodiol, but even those lasted only a few days, except for the seemingly permanent weight gain.

[gwillistexas in reply to Firefly33]

It hasn’t bothered me In any way. I like that you can take it on empty stomach but I take mine at noon every day after lunch.

[gwillistexas in reply to Firefly33]

I have sort of a double whammy. All my life I’ve had fast metabolism so I’ve never been one to gain weight. If my thyroid gets hyper, mixed with metabolism, it wasn’t unusual to lose maybe one or two lbs until it was back in balance. When I’m hypo, I gain nothing. I’m kinda messed up😆

[gwillistexas in reply to Firefly33]

You can send about 20 lbs my way😊

[Hidden]

Is it possibly an absorption issue? or a speeded-up metabolism? I remember you have good appetite. (The chick-fill sandwich that didn't?!)

[gwillistexas in reply to Hidden]

Definitely fast metabolism. Hmmm...didn’t think of absorption issues. Good question. I’ll ask whomever I see first. 😊

[Hidden in reply to gwillistexas]

I was thinking first of absorption, as a lay-person without medical qualification

1 because PBCers have issues with it

2 because it is a sneaky one, we don't feel effects of it, symptoms of it are late showing. e.g. loss of weight and all symptoms that relate to lack of essential nutrients

whereas, you'd have felt effects of increased speed of metabolism as soon as you had an active blood level of oca ? Is your protein intake sufficient? A good dietician might be a good place to start?

[gwillistexas in reply to Hidden]

Having had fast metabolism all my life, there is no physical feeling from it. Yes my protein levels are within normal range and I try to be conscious of protein intake. My hep also told me to drink Boost or Ensure. He is not in favor of protein shakes.

[gwillistexas in reply to Hidden]

I’m wondering, doesn’t the pancreas play a part in fat absorption? I’ll do a little research 😀

[Hidden in reply to gwillistexas]

I don't know - just that it is a regulator of the hormone insulin, and people I know who need totake metformin also lose weight. Please tell us what you discover!

[gwillistexas in reply to Hidden]

I will. Thank you

[Hidden in reply to gwillistexas]

O my! Yes it does. Of interest it has exocrine glands that process fat. I have SS which compromises exocrine glands. I remember you said your aunt had SS. Maybe there's a connection.

[gwillistexas in reply to Hidden]

I tested negative for Sjögrens. As far as I know, I have no symptoms of it. No dry mouth. I’ve had chronic dry eyes since I was 40. Mom had same problem and she had no autoimmune.

I don’t think they would retest for Sjögrens unless they suspect something that I don’t. Good point though 😊

[Vivaldii]

I lost weight on urso and it made me very ill.....after 6 months I cam off it and told doc sorry not taking it ......trying to get into a drug trial at the mo ......but same issue ,weight loss not addressed.......doc said maybe it’s not such a bad thing ....

I am 128lbs and I have to work at it ....122 on urso .....it sounds like it is blunting your appetite?.....how long are you on it ?

[gwillistexas in reply to Vivaldii]

Oh what I’d give to have your weight. Not messing with my appetite, lol! I have an unstoppable appetite. That’s what’s strange. I’ve been on it 2 years

[gwillistexas in reply to Vivaldii]

So you’re Dr wasn’t concerned about your weight loss?

[Vivaldii]

No he wasn’t.And he is just monitoring my blood work.I am being accepted into the trial I think .......I don’t like the idea of no treatment I wonder if you can see a dietitian and increase your calories in such a way as it doesn’t make you sick? I was becoming a bone rack on it after only 6 months......it seems if it is bringing your numbers down the docs don’t care about anything else ......

[gwillistexas in reply to Vivaldii]

When will you know for sure about the trial? Hopefully soon. I thought about a dietitian also. May be my next step.

[Vivaldii]

Hi I read earlier in one of my groups about a women using carnation breakfast drink as well as Propel....some kind of water....thought of you and passing it on

[gwillistexas in reply to Vivaldii]

Thank you. I am drinking Boost High Protein. 20 grams. Did Carnation help her? Or is it?

[Vivaldii]

She said that was what her doc prescribed ....it’s so hard to absorb protein for us ....

[gwillistexas in reply to Vivaldii]

Thank you for that information 😊

[gwillistexas]

G’morning. I was told toveat chicken and fish also. Steak every now and then. Other than that, he said eat what I want. I do just that😊. I agree that we little ones need to be careful with dieting 😊