Taken off Ocaliva today. : Due to my weight... - PBC Foundation

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Taken off Ocaliva today.

gwillistexas
gwillistexas

Due to my weight loss I had to have a colonoscopy/EGD today just to check things out. Dr said if he found no reason in these procedures for weight loss, I was to stop Ocaliva immediately.

I did have a few polyps which he feels are not suspicious but sent them to pathology anyway.

I saw this GI when first diagnosed with pbc. From there on I saw his nurse practitioner. She was aware of weight loss but obviously from what he said today, he wasn’t aware of it. Thank God he’s paying attention. Said if Ocaliva is the problem then it’s doing more harm than good. Low weight is hard on liver. I take no more for a month and see him to check wright. He feels my liver is in good condition and hopefully one month off that drug won’t hurt anything. If I do gain some weight in the next month, he said Hepatologist needs to find something else for me to take.

😊

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Please keep us posted❤. What about Mirtazapine. It does have some side effects as most drugs but, it's been shown to halt fibrosis in mice. Another PBCer is on it for mild depression and her PBC hasn't progressed in several years. I wish I could remember her name. She was on a very low dose too. I talked to my doctor about it but, another thing Mirtazapine does is stimulate the appetite. So, he looked me up and down and said..."No."

I'll try and find the research. My vet prescribed it 3 times for my elderly cats. I have to quarter a 15mg pill for them. They get 1/4mg every 3 days. For humans it 10 or 15mg a day. Very inexpensive too.

Stella❤

Hi Stella. Thanks for that info. If you find her name please let me know. As far as appetite, I’m not lacking in that, lol! I feel confident we will get to the bottom of this. My EGD was normal thank goodness. Now we’ll wait for pathology report on polyps. Scary. I’m worn out so I’m going to bed. Liquid diet all day Sunday through today. Procedure was scheduled for 3:15. 4:20 they took me back. I’ll check in later. Have a nice evening. 😴💤

healthunlocked.com/pbc-foun...

Here's info Stella mentioned. Gail, So sorry that the weight loss continues to be an issue. How frustrating. Keep us posted. We care! Hugs

Thank you. I will 😊

Hi

I wish you a month with too much weight gaining. Then you’ll come to ask how to loose extra weight 😂😂 good luck for you my friend

lol! Thanks! I think I hit a road block this morning. My GI’s nurse practitioner sent a msg through MyChart saying Dr DuVall told her he was stopping Ocaliva. She says she wants to run it by my hepatologist first😔. My hepatologist is from Dallas and is here every Friday. Guess I’ll take it until further word. I don’t like bouncing around. I had actually gained “1” lb as of Sunday morning. Unfortunately I lost it plus 1 during my prep🙃

Just 3 days up to Friday.

Im also about to start a weight gain plan next month. Let’s see what happens. My problem is having no appetite. My stomach is as tiny as myself 😂

I’m drinking 3 Boost Extras a day. 30 gm protein. I think that helped me. You must be small like myself but my appetite roars, lol! Good luck😊

I’m 120lbs and 5.2f

I was 112 when diagnosed 2 years ago. 2 years on OCA I’m down to 90. Dr said I need to get back to 112-115. Id love it. I weighed that for several years.

I believe everything will be okay till next month👌👌

All we can do is hope😊. Hope is something we should never lose sight of.

So happy that you finally are being heard and your doctor is proactive. I'm so sorry you had to have the day from hell with procedures. Give these results, like all other results to the Universe. In the meanwhile, enjoy getting chubby. I can only remember one time in my life that I was told I needed to gain weight. That was during a messy divorce where I was totally stressed out and got really thin! So, let's pray that you are able to gain some good weight rapidly. I know you are a stellar cook and will make yourself some delicious meals. Remember to snack! Love you girl...M

G’morning! Worst part was prep 🤢 and anxiety. They gave me profocol and I woke up sitting there drinking sprite 😁. As I told Sona_akb just now, NP says continue OCA until she can talk to hepatologist. Yes I will be cooking some good meals and hope it helps. Won’t know though unless I can come off OCA and see if I gain. Honey, I snack all day, lol! I took off work today so I’m going to get finished up in the house and go grocery shopping. Thanks for chiming in. Always good to hear from you. Have a great day!

😊🦋

Sorry to hear you're going through all this. All the best with your weight and the results of the tests. I find it odd that the nurse did not communicate with your doctor; I hope that can get sorted out as the nurse and doctor should be communicating closely.

I take Ocaliva 5 mg every two days due to side effects (taste related). Maybe after a month off, if your weight increases you may be able to take a lower dose or they can find something else for you.

I saw that Stella's cats were on Mirtazapine. Mine currently is as well but they make it up at a formulating pharmacy in 0.25 mg and 0.5 mg so I dose as needed. Like people, she was getting side effects from it but it sure does help with the appetite stimulation which I understand isn't your issue.

All the best that you do better soon!

gwillistexas
gwillistexas in reply to Lucky4

Thank you 😊. Nurse practitioner sent msg yesterday saying my GI thought my appetite might increase if off OCA. That’s crazy. He and I didn’t discuss my appetite, only the weight issues. Long story short, NP told GI that she wants me to stay on it until she talks to my hepatologist Friday. Apparently GI agreed. I need the meds but I was disappointed too. We’ll see...☹️

Lucky4
Lucky4 in reply to gwillistexas

I see the FDA says "loss of appetite or weight loss" which sounds more like you might be able to have weight loss with no appetite loss.

When I worked at a mental health team, when we weren't sure about a causal affect, we might try a decrease or augmentation. Why not suggest a decrease and see if your weight increases or not? Just a thought. That's what I'd ask my GI about (she's quite flexible about the dosage).

I've seen that some people are on a new medication but I don't know anything about it.

I wish you well!!! This illness is tough enough without having to give up a medication that's been helping you and you don't know whether or not that's the cause. Hopefully they've ruled out other causes.

PS Why not bring in a daily calorie intake log to your next appointment.

:)

gwillistexas
gwillistexas in reply to Lucky4

That’s what I’ve tried to tell them. Drug facts state it in black and white about weight loss, etc. I don’t think there is a lower dose than 5 mg. I just got my pathology report on polyps and no malignancy. 💃. So the colon isn’t the problem. I may have to start counting calories. They’d be surprised, lol! I’m sure this weight thing will be a process of elimination. You’ve been very helpful with good ideas 😊. Thank you so much. Chat soon. 🦋

Lucky4
Lucky4 in reply to gwillistexas

Yes, 5 mg is the lowest tablet. I take 1 every 2 days....I get side effects if I take a higher dose but even that has helped some.

:)

Well, dang! It seems like you were doing so well on the Ocaliva. Sure hope you can find the right answers!

gwillistexas
gwillistexas in reply to 4pjx__

Hello. Yes I’m doing well in all areas as far as I know. Numbers have stayed down. Will have labs early November. I’m going to request another ultrasound and a test to see if I might have fat absorption problem. I’m to see NP October 10th and hepatologist December 20th, unless he calls me in sooner. I think they think because I’m small that I don’t eat enough. Wrong. If they could see what and how much I eat, they would say “😲”. It will all work out somehow. 🤗

Hidden
Hidden in reply to gwillistexas

Hi Gail - I'm sorry for all the nuisance you are having just now. It just occurred to me about your "fat absorption" comment that it is a known PBC problem. But if it is significant in your weight loss, wouldn't it be evident in your bm's? I do hope you are on a steady footing again soon. Good news about your healthy colon and good liver function.

Best wishes

gwillistexas
gwillistexas in reply to Hidden

Thank you. I’m not sure how fat absorption affects bm’s but I researched and there are many reason listed. Bm’s are normal. The article listed different categories, such as “outside the gut”, clinical features, even thyroid. Broad range of possible causes. 😊

Hidden
Hidden in reply to gwillistexas

Bm's that show malabsorption of fat can be fatty, float, and are sort of shapeless like clouds or cotton wool! I'm so gald you have a great appetite :-) Me too. I would feel really badly if I didn't enjoy my food xx

gwillistexas
gwillistexas in reply to Hidden

Thanks for that info. 🦋. You’ve been helpful 😊

Looking forward to hearing all is well. Big hug xx

Thank you. I will keep you guys in the know. 😊🦋

Are you seeing the NP, GI, & hepatologist for the pbc issues? Isn't it a bit confusing vs having one doctor oversee pbc? In this case, why wouldn’t you just have the hepatologist manage pbc for you?

That would be simpler & none of this back & forth between GI, NP & hepatologist.

Just curious.

I agree i only have a hepatologist and i am happy to have just one doctor overseeing my pbc

First of all let me say this. When I was diagnosed, I was referred by my Internist, to a very good GI who treats many liver conditions and he treats and manages PBC to a point. My city has several hepatologists with one who works in my GI’s group. He told me if I should ever need a hepatologist, he would refer me to one from Dallas. He does not use the heps here for his own reasons. I then started seeing his NP who had been with him 20 years at the time. She is on top of liver issues as well as PBC. When my Fibroscan last year showed slight increase in fibrosis, they felt I should go ahead and see a hepatologist. The NP knows two of the heps at Methodist Liver Institute personally and started arranging for me to be seen. I first saw one who only comes here once a month. The second one was in process of being approved on contract with my hospital. I saw him in July. He felt I was doing very well and scheduled my next visit for December with him unless I had a problem. He is here on Fridays. It was agreed that I would continue to be followed by my GI and/or NP between visits with hepatologist if needed. On the day of my colonoscopy, Dr DuVall (GI), was talking to me about my weight loss. The next morning he talked with his NP. She said she wanted to talk to Dr Mubarak (hep), Friday and get his thoughts on stopping Ocaliva before I stopped. I now will see Dr Mubarak in November to discuss it. So I’m not seeing GI, NP regularly. My hepatologist is in their group, so they work together on this.

Interesting...hope they can help you! I see my hepatologist every 3 months & he manages my PBC. My hepatologist is also a GI so he can address those needs as well.

Keep us posted!

My hepatologist manages mine as well. If he sees a need to me sooner than 6 months I’m sure he will do that.

Hope they find out what is causing weight loss you were doing well on ovaliva

I’m still doing well on Ocaliva. No problems with weight until I started it two years ago.

I had gained a lb as of last Sunday. Then with the colonoscopy prep 🥴, I lost 2 lbs. surprisingly this morning my scales showed I gained 4. I’ll take it😁

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