Clinical Trial

[gwillistexas]

I did visit with my hep on Friday. I think for the time being, I’m still where I was. The protocol is I can’t be on Ocaliva. Well, we knew that. I told him I wouldn’t be very comfortable being without meds for 3 months. He mentioned possibly doing a trial with fibrates. I’m not too interested In that because it is basically a lipid lowering drug. I’ve tried to research any benefits to the liver and found none. Then the conversation went off into my weight. I’ve told he and all my drs, my weight loss started with Ocaliva. No one wants to acknowledge that.

I listened to Prof Jones a day or two ago. He said “drs need to start listening to their patients “. It’s a shame we don’t have drs like he and others, here in the states. Those guys are on top of it all. Such a blessing for those of you in their areas. So, for now I got nowhere.

[ninjagirlwebb]

While they might not “grow on trees”, we have doctors in the states who listen. I have a good rapport with my hepatologist. He listens, advises. Always tells me, if I ever need anything, just let him know.

[gwillistexas in reply to ninjagirlwebb]

Yes, and I get the same thing from mine. I have a very intelligent hepatologist with an outstanding medical background. It just disturbs me when they won’t acknowledge what I strongly feel, caused the weight loss. I know my body and I paid close attention to when the slow weight loss started. And it wasn’t thyroid.

[ninjagirlwebb in reply to gwillistexas]

Maybe your endocrinologist can help though to rule out the thyroid and the other doctors will listen to him/her then.

[gwillistexas in reply to ninjagirlwebb]

My rheumatologist tested for autoimmune thyroid. Negative. And again, ocaliva studies mentions it can alter tsh. With that being said, my thyroid is up and down.

[ninjagirlwebb in reply to gwillistexas]

Only when your thyroid is overactive does that cause weight loss. If they are able to stabilize your thyroid, maybe that will help with the weight too.

[gwillistexas in reply to ninjagirlwebb]

Yes, I’ve dealt with thyroid since I was very young. I totally understand what hyper and hypo does. Since PBC and ocaliva, my Internist watches thyroid closely. My thyroid didn’t take this weight off me.

[gwillistexas in reply to ninjagirlwebb]

I might add, even when thyroid is in hypo mode, I don’t gain. So I suppose that’s the fast metabolism factor. Wish they could slow the metabolism down.

[Candy12]

It’s a such a shame you weren’t able to do the trial without stopping OCA.

Have you thought of e-mailing the PBC foundation with your question around fibrates. I’am sure they would add this to their Q and A sessions, you could catch up with it on their Facebook page, at your leisure if there’s a big time difference. Or watch it live on Facebook and submit a question that way.

There was a French study on BezFibrate a few years ago, that had some promising results, it might be worth a read if you can find it. Fibrates are indeed a lipid lowering drug, but they found one of its effects in PBC was it did lower the ALP, which is one of the things we aim for in PBC.

I take bezafibrate but I still take the URSO with it, although I don’t fully respond to it, I still get some of the benefits. My treatment plan is to keep the inflammation as low as possible, and the combination of meds does that for me, all the time my bloods are normal range.

[gwillistexas in reply to Candy12]

Thank you for that. I will definitely research it. And he did say one of the fibrates. He said he will get back to me in a week or two.

[claygi]

My hepatologist doesn’t listen real well when I talk about pain in the liver area from PBC. He says no, the liver has no pain receptors. Ok, but it’s hurting, I tell him. My Internist is much better. How much weight have you lost?

[gwillistexas in reply to claygi]

I weighed 112 at diagnosis in June 2017. Allergic to URSO capsules so I was started on ocaliva the end of September. Within a few months I started losing a lb here and there. In January 2019 I weighed 106. Lost 5 the end of February 2019 due to not eating with the flu. Then my husband left and I lost more. I managed to put a little weight back on but it’s

Almost impossible. Plus I have a fast metabolism. But I firmly believe it started with ocaliva.

[butterflyEi]

Sorry to read you are no further forward. If you contact the PBC Foundation direct they may be able to recommend a couple of specialists who may be within your travel distance. Just scrolling through I see Candy12 has also made a similar suggestion. It may also be worth contacting Ocaliva (Intercept Pharmaceuticals) with your concerns over the weight issue. I was fortunate to meet a couple of their directors in Oxford, England 3-4 years ago, they were very approachable and very knowledgeable.

I hope you can resolve your issues.

best wishes

[gwillistexas in reply to butterflyEi]

Thank you very much. I suppose I’m probably stressing a little because I’m not sure ocaliva is working right. And I get emails from intercept. The one I received a month ago, seemed the FDA might be looking into the safety now. Well that doesn’t make me feel good either. I’ll have to read it again to see exactly what it said. It definitely left me with questions. I need to get ready for work. I’ll get back to you guys this evening. 😊

[kimphoebe]

Hi there,

I know what you mean about drs not listening. I had a telephone appointment with my hep this week and told I wasn’t feeling well for months now

Having headache being tired very painful bones and the only thing he could say was well your bloods are looking good so he couldn’t understand why I was feeling this way because it can’t be my pbc. I’m at a loss at what to think. My bloods are good now because of taking bezafibrates, after spending a few years doing clinical trials and I’m thinking now why didn’t they give me bezafibrates from the start. Iv now been referred to a rheumatologist for the bone pain. All the symptoms I have are listed as being due to pbc so go figure 🙄

[gwillistexas in reply to kimphoebe]

And the difference is “hearing” & “listening” to us. Right?

[kimphoebe in reply to gwillistexas]

You are quite right, even sent my GP a letter with nothing in it about how I’m feeling, so obviously didn’t take any notice of me, very frustrating 🤦‍♀️

[gwillistexas in reply to kimphoebe]

I hate that for you. My drs all work well together. Mine all actually listen.

[kimphoebe in reply to gwillistexas]

Thankyou, Iv been seeing this dr for years while on clinical trials, so I’m a bit put out by his reaction. Maybe it’s because it’s all done over the phone and not face to face at the moment. X

[gwillistexas in reply to kimphoebe]

You’re welcome. I prefer face to face as well. I’ve never really liked the telehealth visits.

[ninjagirlwebb in reply to gwillistexas]

Yes I prefer in person appointments. I did 1 televisit with my hep when the pandemic was really intense and 1 with my endo like in Dec. Then I went back to in person with my hep.

[ninjagirlwebb in reply to kimphoebe]

I think the research for fibrates use for pbc was only not available possibly when you were first diagnosed.

[Hidden]

Hi,It might be worth considering a fibrate, I’ve had quite fast success with it (so far!), I didn’t respond to Urso so now take Bezafibrate alongside Urso (where I am in the UK they don’t consider Ocaliva until it’s proven that neither urso nor bezafibrate work, due to cost) and I’m happy to say that the combination of both has brought my ALP down to the best level it’s been at since diagnosis. X

[gwillistexas in reply to Hidden]

Thank you. That’s wonderful. A couple years ago, I was a member of the American Liver Foundation support group. It was said that just because our numbers are good, doesn’t necessarily indicate how our liver is doing. That has stayed in my mind when I have labs. That’s one thing Prof Jones mentioned as well. Drs should not just look at our numbers. They need to LISTEN. My Alk Phos was 160 last check. My hepatologist ordered the 5-Nucleotidase test to see why my level was high. The result was normal so the rise In Alk Phos isn’t my liver.

[gwillistexas in reply to Hidden]

Oh Ocaliva is absolutely too expensive! It is over $7,000 here. Thank God I was able to get assistance from intercept.

[Ktltel]

Hi,

I thought there was positive info.. about fibrates somewhere. I know some are using it for PBC with good results.. What about Mirtazapine? And Mirtazapine will help with weight. My doctor won't let me take it. I need to lose A LOT of weight😔. I know there are PBCers on here taking it. One mentioned she was taking 15mg daily for slight depression but coincidentally, in the years she had taken it her fibrosis didn't progress. I wish I could remember her name. But I believe there is information on PBC and Mirtazapine. I'm with you though. I'd feel uncomfortable taking nothing for a few months.

Stella❤

[gwillistexas in reply to Ktltel]

Hi Stella. I appreciate the info. I will stick with whatever choice my hep feels best for me. As far as weight, as long as I was drinking Boost 30gm protein I actually gained weight. But it’s hard to find. I’m at lunch so making it short for now😊