LiverMD

[freebyrd1707]

Hello. I am Stage 2 PBC diagnosed 3 years ago. I have been untreated so far due to reaction to Ursodiol and I didn’t get into clinical trial. He wants to start me on Ocaliva. It’s in the insurance Approval stage. Anyway, has anyone tried LiverMD and does it help at all? And what side effects to Ocaliva? I am a 59 year old female. Thanks!!!!

[rderezin]

I am glad to hear you've applied for insurance approval..if you don't get please appeal and make sure it's far cheaper than cost of liver transplant and related lifetime anti rejection drugs. I am sorry to say it's all about what the cost is for the insurance company. If approved please make sure you are clear on how to take . I was diagnosed a year before they approved URSO and recall how hard it was to take unless you took with meal . Good luck .

Rita

[-JDN-]

Hello freebyrd1707! I have not tried LiverMD. I was on Ocaliva for a few months after discussing it with my doc and reviewing some of the data I was able to find on my own. I was encouraged by what I heard and read. That said, it didn't work for me whatsoever. In fact my labs demonstrated that it had the opposite effect than what was intended. I would suggest that when you start the Ocaliva, talk with your doctor about what frequency they recommend for monitoring liver function through blood work. Good luck and I hope it works as intended for you.

[freebyrd1707 in reply to -JDN-]

Hi. I’m

Not encouraged at all by the side effects I’ve read. Ocaliva sounds like it’s going to make me feel bad. I just ordered milk thistle, dandelion and yellow dock supplement. Hoping that will help. I haven’t heard anything else from

Insurance. I almost want to try Ursodiol again. I had a pretty bad reaction the first time around. But I’ve heard negative things about Ocaliva that really concern me.

[-JDN- in reply to freebyrd1707]

I've been on Urso since 2016 and now we've added fenobibrate for about the past year. To my knowledge, I didn't have a reaction to the Urso. Itching increased on the Ocaliva. Make sure you talk with your doc about the supplements too. Stay strong!

[freebyrd1707 in reply to -JDN-]

He’s not a Dr easy to talk to. He’s matter of fact. No bedside manner. No making you feel at ease. No reassurance. He basically said nothing will help. Told me to lose weight and start walking 10,000 steps a day. I have a desk job. So that won’t happen. He said diet change won’t help and no supplements will help. He basically told me one of these two RX choices or clinical trials. Lol. Which means if I was placebo I would be untreated. To a degree. It’s frustrating. I wish there was another doctor in my area. Friendlier. It’s a lot to deal with when you can’t even talk comfortably with the treating dr. Thankful I found this group. At least I have others to meet some of that.

[Muffymac2020 in reply to freebyrd1707]

Please find another doctor. You don't need the stress of him being your PBC doc. Check out major Medical Centers, even if it's difficult to get to them. This is your personal health!

[SnowbaII in reply to -JDN-]

Has your itching decreased over time while taking Ocaliva? or has it stayed the same ? My mother-in-law recently started taking Ocaliva and she was fine for the first few days, and now that shes onto her second week of taking Ocaliva everyday, her itching seems to have become unbearable to the point she is losing sleep and scratching constantly throughout the day I'm really hoping to hear from others if the itching decreased for them over time. Any help or insight is appreciated.

[-JDN- in reply to SnowbaII]

Snowball,

In my case the itching continued to get progressively worse to the point that it was unbearable. Because I didn’t see improvements in my labs I stopped taking it. The juice wasn’t worth the squeeze. I wish I had a better outcome to share with you. I hope your mother in law has better success than I had.

[OdinsMom]

I on Ocaliva, for nearly 2 yrs now, no side effects at all. I too, cannot take urso

[freebyrd1707 in reply to OdinsMom]

I’m

So nervous. The possible side effects sound horrible. Praying I have none

[CCordier]

Just remember that the list of side effects are only possible, not definite.

In fact the majority of people taking any prescription drug to treat any disorder have no side effects or only mild side effects.

Ill keep my fingers crossed for you.

[Lindz1]

I have been on oclivia for a while now have not experienced any side effects and for the moment my results are almost normal....

[freebyrd1707 in reply to Lindz1]

Since my post, I have had a liver scan and am now stage 3. I started Ocaliva about a month ago. No side effects and my numbers are way way down.

[JBH2000]

That’s great news!!! I’m doing a bit better with the Urso. It’s been going on 3 months, I think my body is adjusting. Keep up the good numbers (or rather down!!!)

[freebyrd1707 in reply to JBH2000]

I am starting to feel itchy at times. I hope it’s my overworked imagination

[rderezin]

In the early years reactions to drug were common but it was found to be the filler and not the drug ..inwould suggest before throwing in the towel..try another manufacturer and always always take your meds with food.

[radidioman]

When I first started URSO, I, too, had a negative reaction (mostly diarrhea). I was started with a 500mg twice a day dosage. I was so down on Urso, I wanted to stop it forever. But, instead, I decided to stop it for a few weeks, then do 250mg once a day for a while, then 500mg once a day for a while, slowly (over the course of a month or two) building up to my original prescribed dosage. It worked. Side effects stopped. Good Luck!