PBC Foundation
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Disgusted

I called my dr first thing Monday morning about Oclavia dosing. Expressed my concerns & she said someone would call me. No call. Thursday afternoon, nurse calls & says “ I understand you have questions about Oclavia. Dr wants you to come in & see his PA. “. I told her I do not need to come talk to PA. All I need is for dr to tell me if I’m being properly dosed. “Well, Rachel is out today but I’ll have her call you Friday (today). NO CALL!!! So happens, the company I get Oclavia through, called st lunch to check on me & to say she was going ahead & order my next script & should have it early week. I expressed concern to her. She in turn, contacted Intercept Pharmacy. A lady pharmacist called & got all my info including dr’s name. She said I need to be evaluated. Dosage for mild fibrosis is different from moderate. She said that’s what this scare has been about...dosing properly. She assured me she will be on top of this. So I’ve decided not to take it until I am safe with dosage. I know y’all didn’t want to read a book, lol! But this girl is not happy😢

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Gwillistexas,

Please don't worry about long posts. We all learn from eachother. Anything you have to share can help someone else. ❤

It makes me mad when they promise to call and then they don't. Happens a lot. The squeaky wheel gets the grease. Keep on them. This isn't anything to be messed around with.

Thanks for the update. Please let us know how it goes.

Stella

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Thank you. I will😊

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Stella is right, if you have an online direct emailing to your doctor group, they are mandated to respond within a few days. You have a record of your questions and the docs lack of response too. This is your life you are taking care of, keep at it! We are all behind you!

Jlruggie

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Thank you.

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When I first saw this GI & he put me on Urso, said labs 3 months. Now, what I’ve read on Intercepts news, is labs need to be followed monthly for first few months. Been on Oclavia since Sept 8th & still scheduled labs in November. So my lab is still in November. He will not be happy when Intercept med team contacts him. Oh well, I’m not happy either & he should have stayed on top of dosing warning. I can squeek pretty loud. 😀

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So frustrating I know. Pharmacy comments reassuring though. Keep advocating for yourself!

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Yes. We are our best advocates 👍

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Awful..just awful. So sorry to hear about the run around. The doctors I use have a good email system and I can get very good timely email responses.

Even the hand surgeon I'm with has a nurse that triages his email and she will relay questions to him and then send responses within 4-5 hours. I get that the liver specialists are super busy BUT you have legitimate questions regarding the dosage and they should be "all over it".

I'm glad that you have the folks at Intercept involved. I pray you get some good direction and peace of mind next week.

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Yes & my Internist is very busy but his nurses return the calls promptly. Have never encountered anything like this. The pharmacist at Intercept is going to have their medical team, in Texas, contact my GI. I am to let her know Monday , if I heard from them.

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Are your specialists at a University attached Med system? Most of them use Patient portals that have email options.

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EileenUSA...I am researching new dr’s. I am making phone calls Monday. I am interested in a dr who is from Pakistan & has excellent credentials in gastro, internal medicine & hepatology. This dr is with a different hospital group here In my city. Prayers.

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This is what is happening as our NHS is becoming more and more privatised. With almost one third of all NHS services being sold off the care that we deserve and pay for is no longer available. This will continue to happen until all the NHS as a service free at the point of need is gone and we have to pay for everything. I certainly won't be able to pay for the cost of my prescription let alone the cost of seeing a Dr or a visit to hospital.

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Last I read Ocaliva causes liver damage so I'd take lowest dose I could or take Ursodyoxycholine only. My enzymes are slightly elevated, my hepatologist prescribed Ocaliva, I wanted to try to lower enzymes by diet and lifestyle, enzymes went down a little, then went up again, doc is very hesitant to rec my taking ocaliva now...hmmm. I have a hunch docs either just don't know and aren't clear about effects of Ocaliva as a result.

Jlruggie

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I wasn’t able to take Urso

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I am on the lowest dose. I just don’t know how many times a week I really should take. Putting it aside until I can get definite answer.

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If it's lowest dose and it's supposed to lower enzymes and REDUCE liver damage, I'd take it. Hepatologist isn't pushing it anymore

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What do you mean hepatologist isn’t pushing anymore?

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She isn’t encouraging me to take Ocaliva

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Well, I’m on the hunt for a new Dr Monday. Have never had a dr with such poor response time with something as critical. Wish me luck.

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The Urso I was taking when broke out in hives, was ursodiol. I’ve seen it called different names here, Ursofalk etc, so wondering if maybe different manufacturers & maybe a different one I might could take. Just have to get with a dr who cares.

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I just take 2 tabs in am and 1 tab in pm of Ursodyoxycholine. Whatcha hazel helps a lot w itching and hives

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So you had hives too? Whelps?

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ew yeah and shingles and itching to blood and scars. ew. So I take great care of my skin with epsom salts rubs in the shower, witch hazel, organic oils and lotions. Not usually anything you can't eat goes on my skin. I'm pretty much fine with daily yoga and now learning auyvedic medicine.

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Sounds like you have grip on it, lol! Thanks for the good info.

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Glad to hear you are exploring different Dr. In your search you might want to look for practices that are part of a system that uses electronic -- patient portal access. It makes a huge difference-- you can make appt on line, request RX refills, email drs that you see and all your labs and office notes are available. Drs. actually like these systems too because it eliminates a lot of "phone tag" because their triage nurses, assistants can more efficiently read emails as they come in and handle the requests as appropriate.

Of course if I needed to talk in person- I can send an email saying that I'm very concerned about xyz and that I would appreciate a phone call or to be fit in for an appt. asap.

I Have used providers using patient portal systems such as "My Chart" for 7 years now and would never want to do without it. I'm in Chicago and all the major provider systems use a patient portal system. I can't tell you how much easier and less stressful it makes it for me. I think you would find it the same.

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Yes my Internist has used patient portal for years. This GI Dr also uses it. I just haven’t gotten signed in yet.

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i see. Well hopefully you will find new dr. that you trust and that uses electronic system. Another plus-- in your case if you had sent an email to the dr attention regarding the new reports of Ocaliva dosage update- that email is a paper trail of you expressing concern over your dosage. This email document would be harder to "ignore" or "lose" than relayed messages from staffers.

And you have " proof" that you were waving an important flag. Good luck with search!

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We have 2 major health systems here. They all have patient portals

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EileenUSA,

I’m in Chicago too and would very much like to know what dr or Drs you see for you PBC?

Thank you!

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Lorraine- sent you private message so I don't derail gwillis thread.

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Lorraine...my Internist referred me to a GI Specialist Dr when my labs showed high M2.

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I took it for two weeks before I realized something major was wrong...chills, shakes, fever...stomach looked like i was five months pregnant. I was in the hospital in a matter of a week. Had a major liver flare and developed ascites for the first time ever. They performed an ultrasound guided paracentesis and removed nearly a gallon of fluid! I am taking a diuretic for a few weeks to keep the fluid at bay. On a strict low sodium diet and will need to have an MRI and endoscopy to see how much, if any, damage was done. Will never take that drug again!

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OMG! That happened with Oclavia?

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I was taking 5mg daily, but the drug manufacturer sent out a recent letter er dosing stating that those patients with cirrhosis should initially start with 5mg weekly. My hepatologist (Mayo Clinic) as well as myself has tracked it backed to my start date taking the med and it’s the only explanation. It’s like any drug...works well for some, not for others. Most important thing is to listen to your body and act accordingly.

I feel so much better now, it’s amazing. Keep posting and let me know how it’s going.

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That’s great that you feel better. Oh yes, I will stay in touch. 💖

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May I ask, are you in cirrhosis stage? I’m at low end F2, mild to moderate fibrosis

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Were you taking it along with Urso or Oclavia alone?

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Been on 500mg 3x daily of Urso. Got thru the initial itch period and adjusted well. Liver function tests are way down, but I’m still not normal. There’s always that quest for the drug that will stop the progression of the disease in its tracks.

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I was 600 a day & felt great just the short time I was on it. I thought it strange the slight itch developed about the 3rd day & no hives till about the 7th or 8th day.

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I hope you recover well from all this. Hang in there & stay in touch😊

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