My husband has recently started to experience that wonderful incessant itching I have read so much about. Up until this point it has been occasional and not bothersome. Now it is driving him crazy. At first we weren’t sure what was going on so we tried different anti-itch creams which really haven’t seemed to help. We now have a call in to his liver doctor and waiting for a response, but…I am wondering if anybody has used coconut oil to help relieve itching. I saw a post back in 2013 about a person using it, but would like any recent info regarding this. Thank you in advance for any information. I have also taken “notes” on other’s past responses on different remedies, medications, ect…but wanted information more specific to coconut oil. Thank you again
Lisa
Lisa,
I tried everything, the only thing that work for me was a prescription my hepatologist gave me. I would strongly recommend. We all have our favorite but I took this one for 4 years and pretty much eliminated my itching. It is rather costly but insurance should cover it. It’s called Rifampin. I took 300 mg twice a day. I tried several times to cut back to once a day but the itch would come back with vengeance. This is good stuff. I hope your husband finds relief. Take care.
Mark
Liver Transplant 7-2015 / PSC 2011
My fiance found relief by way of medication just as Mark mentioned. Same medication. There was another medication that was used…we mixed it in juice. That helped as well… I’ll go back to my older responses and try to find the name of it. I don’t recall specifically finding any comfort with coconut oil but I don’t doubt we tried it. I do remember episom salt baths helping. Whether it was placebo effect or not, a nice hot salt bath before bed allowed him to get some Z’s. I had him scrub with a charcoal sponge. (Charcoal draws out impurities but discuss this with your doctor first.) We didn’t apply lotion or oils after bathing, allowing pores to breath.
I will say, if your husbands itching has worsened, I would watch your labs closely and stay on top of that response coming from your doctor. On our end, when the itching increased so did the bilirubin on our labs and soon then we were started to see encephalopathy set in.
Take care, Lisa.
Gloria,
I’m glad your fiance was able to find relief with the Rifampin. It was a sanity saving medication to me as the itching was unbearable at times. I hope he continues to do well despite the disease he must live with. There is hope!
Mark
Hello, Mark.
Thank you for the encouragement. My fiance was transplanted 2/2015. Itching
is a thing of the past - thank God! And hopefully something we never have
to deal with again.
Take care.
Well that’s great Gloria. I probably knew that but in responding to so many posts over three different liver forums it’s hard to keep up with everyone. I was transplanted that same year 7-2015. I’m glad he is doing well.
Mark
You’re doing great work, Mark.
No worries…
Yes, same year. Seems like yesterday but also a lifetime ago.
Cheers,
P.S. Glad to see you updated your photo!
Lisa,
In April this year I experienced active PSC symptoms, the itching being one of them. As you described I didn’t know that I was dealing with pruritus related to my diagnosis. After various attempts to apply topical treatments, a friend gave me some pure Jojoba oil which is renown for its skin healing qualities. It worked, and helped heal the scarring that had begun to feature on my neck and arms.
Hope this helps.
Sharon
Sharon,
I’m glad you found something to help with your itching. I have never heard of Jojoba oil. I thought I had tried every lotion and potion when I was living with the debilitating itching. It’s nice to know you found something that works besides medications. I trust your PSC symptoms are under control at present and that you are doing relatively well. Glad to have you chime in to the group.
Mark
Thank you so much for the info Sharon. Very interesting. I have never heard of that either.
Lisa
Thank you all for your comments. We ended up calling his doc. Bloodwork done-wasn’t too bad actually. Not as good as a month ago, but bilirubin was still in normal range (crazy), but we did get a couple of scripts anyways. He gave him a weeks worth of Levaquin and he is now on cholestramine twice daily. I’m thinking this might be the other med you were talking about Gloria-he mixes this in juice. It has helped tremendously. He was also starting to develop a rash on the back of his arms, neck, upper chest-this has gone away as well. He will repeat bloodwork next week just to make sure. He’s also put him back on Ursodial. I’m sure as a “comfort” thing. I know it doesn’t change any progression, but if it helps in any way…
He did do the Epson salt baths also, until the rash got bad-burned big time. 