TERRIBLE ITCHING ALL OVER ALL DAY EVERYDAY! - PBC Foundation

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TERRIBLE ITCHING ALL OVER ALL DAY EVERYDAY!

genj65 profile image
14 Replies

I am suffering from itching nothing that my University of Michigan dr tried works for me I've itched constantly since August 2018 until now with no relief. As I mentioned on a previous message dr allows me to take benadryl to sleep. I prefer children's liquid so that's what I take.

Does anyone know if cannabis oil drops work. My regular doctor's office sales them for patients with pain and said she would think I'm okay to try for itching. HELP NEEDED my skin is ruined all over:-(

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genj65
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14 Replies
Ktltel profile image
Ktltel

Have you tried primrose oil?

genj65 profile image
genj65 in reply toKtltel

No I haven't but willing to try anything at this point! Thank you..

Ktltel profile image
Ktltel in reply togenj65

I saw it mentioned in a video about PBC and the itch. Get it at a health food store.

Stella❤

SunnyXXOO profile image
SunnyXXOO

Hi genj65, the itch is unforgiving. I use Cannabis Oil (RSO Rick Simpson Oil),

and CBD from England (SOL-CBD), it immediately works like a charm. In regards to the Oil, I only use about the size if a sesame seed, I don’t like the high so I use CBD before. The CBD will off set any high or euphoria from Cannabis.

There are a couple other things that work. 1) Rx Merinol (synthetic THC) work well but itch about 10 minutes before kicking in, 2) Atarax Rx also works great, but the side effect are horrific, 3) Gold Bond itch spray,

4) Curcuplex95 Supplement is a potent anti-inflammatory agent.

Hope this helps.

Love, Graditute, Peace and Love,

SunnyXXOO

genj65 profile image
genj65 in reply toSunnyXXOO

Thank you so much SunnyXXOO I'm going to look into the oils. This itching has got to stop!

Love, Gratitude, Peace to you as well:)

SunnyXXOO profile image
SunnyXXOO in reply togenj65

Gen65, I feel for you, I’ve been there done that, absolutely horrendous!! You do have a few options, I mentioned last post regarding CBD/Cannabis etc.....

There are a few other things you can do to prevent constant itch.

1) no hot showers or tubs (hot water is a trigger to itch, 2) lose clothing preferably 100% cotton, (elastase or tight clothing triggers), 3) hot humid weather will trigger 4) try to use cotton sheets on your bed. Too many clothes or blankets too hot will trigger. Hoping your use to wearing seasonal light layers.

Hope this help

Sunny

PS Watch your diet, too spicy out, Liver doesn’t like oil, go light with oils (olive oil,/cooking oil etc).

SunnyXXOO profile image
SunnyXXOO in reply toSunnyXXOO

Loose clothes, not lose clothes ! Although that wouldn’t be such a bad thing huh 🙂🙂.

Kimmyk profile image
Kimmyk

Get to a hemotologist. See if there is a problem with your blood. if your platelets are too high or low you can have itching problems.

Ottley3 profile image
Ottley3

I was using this strong lotion called Sarna. It really helped. Good luck

genj65 profile image
genj65 in reply toOttley3

I started using Sarna lotion a couple of weeks ago and it helps calm the itch. I don't like the smell of it and if I put on too much it burns 😯

danaLL profile image
danaLL

I have had the same problem too, especially when I was pregnant. The cholestyramine was hard for me to take because I had to space it out with the other medication. Rifampin really helped as does naltrexone. I did try CBD oil and cream as well. Just be careful with it because it’s supposed to boost the immune system it can cause problems for patience with PBC. my level spiked dramatically and that was the only difference in my routine. As an example I total Billiribon went from .9 to 2.6.

genj65 profile image
genj65 in reply todanaLL

Thank you so much! I tried both cholestyramine and naltrexone neither worked for me :-( The naltrexone helped me sleep..

danaLL profile image
danaLL in reply togenj65

You are very welcome. I was to the point where I was lying on the cold tile floor and coating myself an oatmeal. It sucks and unless you have that problem you just don’t understand how badly it sucks. Have you tried rifampin? That really helped me. Also it took me a while of taking cholestyramine on a regular basis for it to actually help. At first it did not help at all. I also do the children’s Benadryl I will do hydroxyzine and recently somebody told me Allegra helps as well. I also wonder if it gets to a point where your skin is so irritated that you get dermatitis or it’s just mentally gets to you. There’s a lot of information out there about that. So I will also take Xanax from time to time to knock me out long enough so I stop scratching at my skin can heal . Good luck I hope You find something!

Dyfry profile image
Dyfry

I have suffered greatly with the itch for years- nothing worked with the really bad episodes. Effected all aspects of my life.. not going anywhere, staying up for days.. depression, drinking.... It appears that I have finally found a solution.after begging my GI for years.. I was prescribed Gabapentin by my psychiatrist . It can help with nerve impulses/pain. Which makes sense,since the puritius comes from inside.. so sick and tired of people telling me to just put lotion on.. I also started taking Mirtazapine at night. It's a anti deppressant that helps greatly with sleep.. I finally feel like a somewhat normal person!!! I'm almost scared to say it.. should it stop working.. But I must share this with those that suffer from the horrendous life changing Itching!! Please try it.. hope it works for others....

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