Is this normal when you start taking U... - PBCers Organization

PBCers Organization
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Is this normal when you start taking Ursodiol?

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I was diagnosed February 16, 2020 with Stage 2 PBC. I have so many questions and would like to connect with someone in Virginia if possible to educate myself more with the symptoms. I started URSODIOL 500 mgs last week to get me started and I’ve felt so tired, nauseous, weak and vomiting. My joints are also aching. Today I will start with 500 mgs twice a day. Is this normal when you start the drug?

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I'm not in Virginia, but I'll answer anyway. Many people don't have side effects when they start Ursodiol, but some do. When I started, I was told to take a fraction of a dose for a few days, then up it slowly in case of side effects. Even with starting with a low dose I had side effects for 2-3 days. I felt like I had the flu, with a headache and body aches, and fatigue. I felt really crummy! Each time I upped the dose, the symptoms returned, but less and less, until I was on the full dose, and then I miraculously felt better than before I started the Ursodiol. I think it took me 3-4 weeks to get to the full dose. I never had nausea or vomiting. You might check in with your doctor about the symptoms you're experiencing. You could possibly start over with a lower dose (250 mg.?) One other thing to consider is you might be reacting to the fillers/inactive ingredients - very common. Or, if you're taking Actigall, the capsules contain dyes which can cause reactions. So, if the issues persist, you could ask about trying a different manufacturer. I've called my pharmacy and quizzed the pharmacist about which manufacturers of Ursodiol they are able to get in stock, then I've looked up all of the inactive ingredients of each brand, and then requested the one that I think is most likely to work for me. Good luck, and I hope you feel better soon.

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Hidden in reply to periwinkle88

Thank you so much for the information.

Sunshine, did you have any of those symptoms before you started taking Ursodiol? They are all common symptoms of PBC. I was just diagnosed a year ago and had those symptoms (including nausea) before and after starting Urso. The nausea thankfully went away after a few weeks on Urso. I highly recommend ginger tea or chewing candied ginger for the nausea, it worked like a charm for me.

I was one that had no side effects from the Urso but Periwinkle88 is right, some people do. She provided you goid advice but you should first talk to your doctor about all these symptoms, before reducing your Urso, to make sure you arent having an exacerbation of your PBC.

And by the way you can take your Urso. in one daily dose instead of 2 times a day. A Stanford University Medical School Gastroenterologist told me that (Stanford docs are the best :-) )

C.C.

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Hidden in reply to CCordier

I only had the fatigue and dizziness. They were treating me for vertigo.

Other than nausea it wasn’t the urso that caused things but the PBC. I’ll be in VA in April if you want to meet. Also will be meeting with at least one other pbcer while there

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Hidden in reply to OdinsMom

I would like to meet up with you.

OdinsMom
OdinsMom in reply to Hidden

I’ll be in Moseley so not far. We can just pick a place and meet

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Hidden in reply to OdinsMom

That is great!

Where in Virginia are you located? I have a friend in Roanoke that i visit occasionally.

Ive taken Urso since 2011. I had several of the symptoms you stated but feel like they were from the PBC. Body aches (hurts like heck sometimes), nausea, etc. still have them part of the time. And the fatigue can be debilitating! You must try to rest when your body tells you or you may be down for Days if you keep pushing. The other thing it could be the fillers since each company does something differently. Totally agree with that!

Anyway, here if you need an ear!! Good luck snd try not to stress. Also you may experience some depression. Do be prepared and know you aren't in this alone!! Praying for you!!

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Hidden in reply to lovetocreate

Thank you so much! I’m in Powhatan VA. 30 minutes outside of Richmond. I went to my primary care doctor today because my throat was so sore. The strep test and flu test all came back negative. This is a big adjustment for me for sure. I keep trying to push myself but I’m learning that is not going to work.

Hi. I'm in Maryland. Sort of close.

Maybe it's the dose of Urso you're taking. I take 300 three times per day and I've never had an issue. I was diagnosed April 2016.

Joanne

I am an 81 year old male diagnosed with stage 3 PBC one year ago. Since I retired in’99, I have worked out most days, and I stay on a rather healthy diet. The gastroenterologist started me on 500 mgs Ursodiol 2 x daily straightaway. I am unaware of any side effects. My bloodwork results returned to normal range; however I do not see this med as adding longevity in my particular case: It is palliative, not curative, especially given my age and the stage of the disorder., I have taken some solace in using the GLOBALPBC.COM website , which “scores “ PBC patients, representing “an internationally relevant and validated risk assessment tool, able to accurately stratify PBC patients to high and low risk.” I view it only as way to get a “snapshot” in time, but still it is informative. It is not indicated for liver transplant patients.

Good luck!

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Hidden in reply to Stub007

Thank you so much for the information. My doctor stopped the Ursodiol because I am allergic to something in that specific manufacturer evidently. He’s thinking it’s in the filler of the formula.

I take 300mg 3x a day and I've never had any problems. I have heard others on the 500mg 2x daily have the same problem as you

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