Anyone know why the itching is worse at night? I have such a hard time falling asleep. It’s so frustrating!
With winter here the itching has gotten worse. Lots of lotions and/oils keeping the skin moist and a quick rub down with a baby wipe (just to feel fresh) seems to help at night. We have a prescription we can fill should the itching get horrible but we've yet to fill it. The medicine prescribed is 'questran powder'. It assists in the removal of bile. Good luck.
Thanks Gloria! That’s what the doctor just put me on. I’ve been taking it twice a day since Monday night. How long would you say it takes to start working?
You can try to Google that... I don't want to steer you wrong, or give bad information... I think a week or so should be adequate time to see results. I found that the more your mind is entertained the less you can focus on the annoyance. I hate TV in the bedroom but watching it until you're ready to crash out helps sometimes. Also, keep your nails short and if possible, keep your hands away from your body as hard as it may seem. Good luck.
It also tastes like bile, too.
Gloria said:
With winter here the itching has gotten worse. Lots of lotions and/oils keeping the skin moist and a quick rub down with a baby wipe (just to feel fresh) seems to help at night. We have a prescription we can fill should the itching get horrible but we've yet to fill it. The medicine prescribed is 'questran powder'. It assists in the removal of bile. Good luck.
To stop a lot of my itching, I got Rifampin and Cholestramine Oral Light 4 grams. I still have some days of itching but it has tamed my symptoms by tons. I do mix the powder with about 6 ounces of lemonade. That helped the taste.
Cholestyramine
I can't spell...lol
Thanks Katsy. I think it’s finally starting to work!
what time do you usually get the itching? Before bed?
John, I itch most of the day but its usually bearable. It gets worse at night, usually. Makes it hard to fall asleep
i get itching in the joint areas or my legs . what about you? most of the day? :(
I get mine mostly at night. Does it wake you up?
Mine is all over but more concentrated on the bottom of my feet and palms of my hands. I don’t wake up from it as much as I have a hard time falling asleep. If something or someone-one of my kids- wakes me up, it’s hard to fall back asleep.
I also get it on the palms and feet. Any idea why that is and how to stop it?
I wish I knew John!
Cholestyramine has helped a lot but there are still days that are worse than others.
I find that if I get too warm and start to even mildly perspire the itching starts. If I've had an active or hot day (weatherwise) I often take a shower before going to bed, which seems to help a lot.
Re: hands and feet, these are areas where your blood vessels are closer to the surface and therefore easier to "off-gas" bile. Same for your neck and scalp.
Hope this helps somewhat.
Has anyone heard/used charcoal to release the 'off gassing' bile externally or internally? I've been seeing a lot of users online using charcoal to purify the body, as charcoal does to water. (Think Brita filter.) It is an old practice. My fiance thought he heard the doctor use charcoal extracting as an example to how the Questran sweeps bile. -A
Wow! Thanks for all your comments! I’m learning so much from you who are dealing with this crappy disease.
Oh thanks for the information about blood vessels and the itch. Did you find anything online about this? I would be interesting in reading about it.
JonW said:
Cholestyramine has helped a lot but there are still days that are worse than others.
I find that if I get too warm and start to even mildly perspire the itching starts. If I've had an active or hot day (weatherwise) I often take a shower before going to bed, which seems to help a lot.
Re: hands and feet, these are areas where your blood vessels are closer to the surface and therefore easier to "off-gas" bile. Same for your neck and scalp.
Hope this helps somewhat.
No, but as a backpacker I'm familiar about heat loss through blood vessels near the surface (and hypothermia which I've gotten twice) and off-gassing nitrogen and decrompression sickness from SCUBA diving.
Since PSC itching is caused by bile being secreted through the skin from your blood vessels, it only makes sense (at least to me) that the places in your body where your blood vessels are concentrated and closest to the surface are the easiest path and where a disproportionate amount of bile would be secreted and make it to the surface quickly.
Google or go to an anatomy website to find out more about blood vessel distribution in the body.
Thanks.
Jon W
John said:
Oh thanks for the information about blood vessels and the itch. Did you find anything online about this? I would be interesting in reading about it.
When I asked my doctor, he said the feet and palms can be itchier because that's where the nerve endings are. I hadn't heard about the bile being secreted through the skin though. That's interesting. I thought it was anti-histamines on the surface of the skin. For me, it's also very good to shower if there's any perspiration. Also, wearing very thin pyjamas (rags really) helps me and having the window open a crack at night. Also, in your case, try sleep deprivation for a few days. For instance, sleep one hour less than you prefer, and this will add up to enough fatigue to make you drop like a rock after a few nights. I don't know if that's helpful for you. Of course, it helps to go to bed at the same time every night. Also, you may find that you sleep better through the night if you eat a lot around 3 pm, or if you eat a lot before bed, such as a big bowl of oatmeal.