Anyone with PBC tried Rifampin? - PBCers Organization

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Anyone with PBC tried Rifampin?

Purply
Purply

Has anyone with PBC been given Rifampin for sleep and itching? And if so, did it help?

Thanks for replies ahead of time

12 Replies
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PBCCarol
PBCCarolAdministrator

I haven’t taken it myself but hopefully others who have will jump in. I have heard many say it helped them

Purply
Purply in reply to PBCCarol

Thanks, yes I am hoping someone will have tried it and can let me know their outcome

Unfortunately, Rifampin did not work for me. Luckily my itching is mild & not constant. Sarna Lotion works well for me.

Purply
Purply in reply to idotech

Thank you for the reply! I have tried Sarna lotion and it doesn’t seem to help unfortunately and I’ve been taking the Rifampin about a week and can’t tell much of a difference. I go back to dr in March so I am going to talk with him again about some more options because I have scarred my body up from the scratching I’ve done because my itching is so severe I’m getting discouraged but I keep praying - take care and thanks again I’m glad the Sarna lotion helps you

FranSP
FranSP in reply to Purply

My itching problem was severe. I used multiple OTC preparations with some very temporary relief. I now am taking Rifampkin at bedtime. The itching is mostly gone. It’s a new life...

It was one of the first medicines I was given to try and get on top of the itching and lower my lfts but unfortunately it didn’t work, so I was taken off it.

Purply
Purply in reply to Rosemadder9

Thank you for the reply I’ve been taking the Rifampin about a week and I can’t tell much of a difference unfortunately. I have tried so many meds and home remedies and I’m getting so discouraged because my itching is so severe and I have literally scarred up my body

Hidden
Hidden

I was taking Rifampicin for the past 6 years because my itch was dreadful. It bought relief within a couple of weeks of starting it. The only problem with my situation was that it assisted with the elevation of my bilirubin level over time, but I had been ill for 7 years prior to starting the Rifampicin. It did make my life more bearable, particularly as I was scratching myself so badly and hat I had scars all down my arms and hands. I think the combination the Urso and Rifampicin kept me going. I am now 4 months post transplant and really feel on top of the world. Good luck on your journey. 😊

Purply
Purply in reply to Hidden

Thank you for replying! I am so glad to hear you got some relief from the dreadful itching and that you are doing well after transplant. Did your scars go away or somewhat go away or are they permanent? My itching is dreadful too and I have been on Rifampin since January 31st and I am finally seeing subtle changes in my itching praise the Lord!! It is pure awful at the scars I have caused from scratching the insatiable itch on my whole body especially arms hands and legs some on stomach and back - I am too embarrassed now to wear shorts or short sleeves it is so awful looking - thanks again for sharing and I am so happy for you that you feel on top of the world that is so encouraging!! Take care!! I see my doctor in March and I will mention the bilirubin level - I told him I had joined this group recently and I was looking forward to hearing from others with PBC because I know y’all can understand what I’m going through

May God bless you and your recovery!!

Hidden
Hidden in reply to Purply

Yes I had some scarring particularly on my arms and hands but also suffered other parts of the body. Most have faded over the past few years whilst on the Rifampicin as I wasn’t itching as much. My dose did increase but then so did my Urso over time. The one thing that did help me during the past three years was excercise. I always felt that if I could walk/run my itchiness wasn’t as bad. I tried to do something everyday but I get the fatigue part as well as we all get that with PBC. I’m not suggesting to run this was just worked for me. Stay positive.

Best of luck in March and stay in touch. 😊

Purply
Purply in reply to Hidden

I will stay in touch for sure! Take care and hope your recovery continues to make you feel the best you can every day. I am going to start walking again and I am going to try and lose the 20 lbs I have gained because that has made me feel even worse and more discouraged also I am having pretty substantial knee pain from left knee because I may need surgery so I am getting ready to try Arthrozene for that before I see the orthopedist in March. March is my month of appointments ha ha :-)! Physical, liver dr and orthopedist - I’m going to keep my chin up and enjoy each day despite these body challenges and talking with you has made me more encouraged to face each day happier and healthier.

You may want to ask your Dr for setreline. Its an anti depressent. I have been on this for years for depression and i have just started itching. 5 yrs at least with PBC. Many have said it helps them. Ask your Dr.

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