Seledelpar

[gwillistexas]

Has anyone taken this new drug? My hepatologist has offered for me to try it since Ocaliva isn’t keeping my ALP down to a desirable level. Your thoughts?

[IAmTheGlue]

I have not tried it. I have never responded to Ocaliva either.

Was it an option to stay on it since the issue with the FDA? I’m just curious as I go back to the Mayo Clinic in a couple weeks.

[gwillistexas in reply to IAmTheGlue]

I was allergic to URSO and was immediately started on ocaliva in 2017 and been on it all this time. It worked wonders and kept my ALP low until about a year and a half ago. Then it started fluctuating back and forth, more forth than back, lol! It had gone to 177 and dropped to 152 in October. Labs yesterday, it’s back to 177. So we’re not pleased. I hate it because I never had one problem with it other than I lost weight. I saw my hepatologist a couple weeks ago. He didn’t really say anything about it possibly being being taken off the market. So I don’t know…

[IAmTheGlue in reply to gwillistexas]

Thanks, I’m sorry you are going through this. I’ve been wondering if they will allow me to continue it.

[gwillistexas in reply to IAmTheGlue]

Hopefully you can continue. Do you take URSO and ocaliva?

[IAmTheGlue in reply to gwillistexas]

Yes. I’m in compensated cirrhosis and my insurance company fights me about the Ocaliva every year because my bloodwork has never normalized. It’s so stressful.

[gwillistexas in reply to IAmTheGlue]

I’m sorry. I didn’t take a prescription plan when I started Medicare. Never needed it. I’m debating whether to get one now but not sure what I’d run into with ocaliva or any other of the new drugs for PBC. We sure don’t need stress from insurance. 🙏🏻

[DonnaBoll Administrator in reply to IAmTheGlue]

keep in mind that many many of us who have PBC never get to that 'normal' number. Several experts feel anything below 200 is acceptable. Are you unable to take Urso then?

[DebatDG9 in reply to gwillistexas]

Obviously I’m no expert but is it really such a big deal? 152 and 177 not much difference in the scheme of things?

[gwillistexas in reply to DebatDG9]

Well, it is my understanding the ALP can be from bones as well as the liver. I remember when first diagnosed, my dr was happy when it came below 200. So I don’t know.

[gwillistexas in reply to DebatDG9]

I decided to ask my hep to order a GGT and see if the elevated ALP is in fact from my liver or bones.

[DonnaBoll Administrator in reply to DebatDG9]

I tend to agree. I know how scary it can be when that number goes up though. Need to just be patient and see what the next set of labs show, I think.

[4pjx__]

I have not tried it but I have read on some of the other support groups (Facebook) that people are doing great on the Seledelpar. I haven’t seen anyone say that they had bad side effects from it.

Keep us posted

—Pam

[gwillistexas in reply to 4pjx__]

Thank you. I’m being cautious about it. I tried Iqirvo and got off quickly. Since I’ve had PBC I’ve grown allergic to many drugs.

I appreciate your response.

[DonnaBoll Administrator in reply to 4pjx__]

I know several people who participated in clinical trials with that drug and had amazing results.. they discussed this drug at The PBC Summit I attended in the Spring. It has been shown to be effective for reducing liver function numbers as well as the itch. I believe it went on the market last summer. It is believed to be a great second line treatment for those who can't take Urso for whatever reason or they are non responders in some way.

[butterflyEi]

From other support groups I know of one person who was on the trial and another who is now being prescribed this drug. Both have reported good results. I hope it works for you. I am sorry to read that you have grown allergic to many drugs, it makes things just that bit more difficult. Do let us know how you get on with it.

[gwillistexas in reply to butterflyEi]

Thank you. I will. I haven’t made my decision just yet.

[DonnaBoll Administrator]

what has been the overall trend of your alk phos numbers since you took Urso? where did it start and what is it now?

[gwillistexas in reply to DonnaBoll]

at diagnosis in 2017 it was 247. 11/2017-148. 1/2018-132. 12/2018-107. That’s the lowest. I’ve looked back through my labs and it trended back up after all that. 140’s to 160’s. Steady increase.

[DonnaBoll Administrator in reply to gwillistexas]

140 - 150's isn't bad though.. I know when we have had lower numbers it's scary to see any increase. Sometimes we need to remind ourselves that this is a very slow progressive disease. Having labs drawn every 3-6 months gives us plenty of time to watch the overall trend.

[gwillistexas in reply to DonnaBoll]

I had an allergic reaction to URSO. Welts all over my thighs and bottom lip. So I lasted about 10 days on URSO.

[DonnaBoll Administrator in reply to gwillistexas]

That is so unfortunate. Very few folks are really allergic to it.

[gwillistexas in reply to DonnaBoll]

I know bones or liver can cause the increase. From what found, if it’s from the liver, a GGT result will be off. If from the bones, only the ALP will be off. So I searched further. Cleveland Clinic says bile ducts, bones, kidneys and intestines produce an ALP enzyme. They recommend having an ALP Isoenzyme test to see which enzyme is causing it.

[DonnaBoll Administrator in reply to gwillistexas]

think that's the GTT test if I'm not mistaken....

[gwillistexas in reply to DonnaBoll]

I thought GGT only tells if it’s bone or liver. The ALP isoenzyme goes a little further.

[DonnaBoll Administrator]

You are right..... it measures the levels of different types of ALP in your blood. ALP is found in many tissues including liver, bones, bile ducts, and intestines. I thought it was interesting that I read that it is more expensive than a regular ALP measurement and technically challenging so that some labs don't do the test. Thanks for keeping me on my toes!!

[gwillistexas in reply to DonnaBoll]

Of course, lol! I sent a msg to my hep asking if he might consider doing that test but haven’t heard back. I usually get a response from his nurse sooner than later. Hope he didn’t think I was trying to run the show🤣. He’s probably thinking “what has she found now”😂 I just didn’t want to jump to the other drug without trying to determine why the ALP is high A patients prerogative Right?

[gwillistexas in reply to gwillistexas]

***perogative.

[DonnaBoll Administrator in reply to gwillistexas]

Being proactive should be admired by physicians. He shouldn't feel threatened at all. I would hope he would welcome a mature conversation with his patients just from their inquiry. Let me know what he says.

[gwillistexas in reply to DonnaBoll]

He knows I’m proactive and how I question things. I’ve no doubt he knew that when he first saw me. I really don’t think my question to him was an issue but I sure would like a msg from his nurse. I’ll let you know 😊

[gwillistexas in reply to DonnaBoll]

He ordered a GGT

[Michi1]

Sorry about the delay in getting to this, ladies. I’ve become buried in Black Friday emails and am finally getting into the pile.

At Dr. Levy’s patient conference in the Spring, there was a discussion about drugs that are in development and trials, and they had some good things to say about Seladelpar. I’m sorry I don’t remember the details as I am an Urso responder but I do remember they were very excited about it as having a lot of promise. Dr. Levy has a lot of patients in the trials and there were two other doctors whose patients had also had good experiences in the trial.

[gwillistexas in reply to Michi1]

Thank you. My GGT was slightly elevated so I agreed to try this drug. I’m hoping for good results