Itching is worse than ever driving me insane and I feel like all I do is moan about it and I know I could have worse things happening to me but I can’t help but cry . Itching from head to toe , took my powders took antihistamines today put my e45 itchy cream on and been spraying my cooling spray over me but just won’t stop the itching ..feel so alone .
Regards sherrie
You are not alone. I am usually asymptomatic but the itching starts when I eat certain foods. They include wheat, flour, some seafood such as shrimp, scallops, lobster. If I eat an anti inflammatory diet, the itch goes away. I hope this helps and you feel better.
So sorry to read your post, and I do know how you feel. My cocktail to control the itch is Rifampicin, Colestyramine and Sertraline. When it flares I use an antihistamine as well. Can you contact your specialist and see if he can prescribe something else for you. It is miserable. Please do not feel alone, we are here for you.
Thank you , currently sat here still scratching like mad it’s making me so down . I have consultant appointment in 3 weeks . X
I find ice confuses my skin for a while but it is not all over my body
That’s trouble it’s literally all over , so started using cooling spray to help hopefully
Hi Shezza123 I have been having a lot of problems with the itching lately too especially on my scalp and back. But I have it all over too. I feel like I walk around with a back scratcher all the time. Mine comes in Spurts also. I take the powder and then once it’s under control I’ll stop . I’ll go a while and it will be ok . Then all of a sudden it comes back really bad. I feel like it’s a vishious cycle. My head get’s to itching so bad that my scalp is sore. I had to give up coloring my hair because of it. Have you ever tried Saran lotion? I think it helps some. Also I think Ogx tea tree mint shampoo and conditioner helps some too. Good luck!
Hi thank you for replying to me , that’s worth knowing and trying cause yes my scalp gets really itchy too so I’ll try that .. is the Saran lotion like body lotion ?
What is this powder you use for itching?
Cholestyramine powder I take mine in yogurt
I take mine in juice I never thought of putting in a yoghurt I’ll try that , thank you x
Darn spellcheck Sarna lotion
Yes, everday. I am so sorry, I put on oatmeal cream and wear only light natural clothes. Food triggers are being investigated. Asymptomatic. I do everything to keep busy mentally and physically. Being still is when I am the worst. Much love sisters of the itch
Are you strictly adhering to a liver friendly diet? Have you tried intermittent fasting? Most of the PBC patients I know, including myself, show marked improvement in PBC symptoms and liver enzymes when incorporating a plant based diet into their daily routine. Personally, all my PBC symptoms went away when I lost weight and followed a healthy diet along with intermittent fasting. Good luck. I hope you find a solution!
Hi there I have put weight on since lockdown and been depressed not exercised and ate what I liked as for liver friendly diet I never been informed about this by anyone .
That could very well be your problem. I'm a RN with PBC and it angers me that doctors don't educate their patients more. That's likely because the average MD only gets about 4 hours of nutrition training. I'm going to find some research based articles on the importance of nutrition and intermittent fasting for you and return later and post them here. My own hepatologist is a big believer in both IF and I know other hepatologists who believe it as well. My last visit he told me, "I wish all my patients followed the diet protocol you do." Yet do you think he teaches them?!!! No!
I'll be back and post some articles that I truly believe will empower you, as it did me, to be better equipped to fight this disease and feel a heck of a lot better in the process. ♥️
Hi I’m going to start my fasting diet today with your help , I was going to wait till see my consultant in two weeks to check but so low in myself regarding my weight and first day back at work so now is fresh start, struggled so far with getting up and having a coffee with no biscuits and going to have nothing to eat till 10 which I worry about as they say breakfast is most important meal of day ? X
Here are some articles to show the health benefits of fasting: aichc.org/how-intermittent-...
health.harvard.edu/blog/int...
healthline.com/nutrition/in...
And here is one on the general diet PBC patients should be eating:
I'm sorry you are feeling so down. The wonderful thing about IF is that once you see how much better you feel, and your numbers go down, it empowers you. The key to your health is no longer solely in the hands of your doctor or a pill. It is in your hands as well.
Here's the key to success with IF: Start gradually!!! If you are used to snacking at night after you eat dinner, that may be tough to stop cold turkey. Prepare ahead of time by having some things on hand to get you through it. I use carbonated water or tea, but initially some broth or decaf coffee would be okay too. Also, make sure that your last meal of the day is a high protein meal that will stay with you so you won't be hungry in an hour.
Some sources tell you that you can't even have a cup of coffee on a fast but my results were obtained drinking 2 cups of coffee in the am with a small amount of cream. I also sweetened it slightly with organic stevia.
By starting gradually I mean the hours you fast. If you are used to eating snacks until bedtime and eating soon after you arise, your body is not adapted to using it's own reserves. So if the average time you go without food is LESS than 12 hours, start with a 12 hour fast. That would mean something like stopping eating at 8, and then not eating till 8 am the next morning. Then gradually expand that window to 13 hours, then 14 hours until you reach at least 16 hours. If you do this gradually you will find it relatively easy as your body learns to draw from it's own resources more quickly. For example, I have very little hunger now before noon or after 6 pm. My body has learned that those are the times to expect food.
Most important of all, keep doing your own research. I found that listening to a lot of podcasts on Youtube and reading about the benefits of IF increased my motivation. Reflect on the great benefits you will be giving your body by providing it some time to repair when it no longer has to digest food all the time. Science has shown that short periods of fasting can improve memory and focus, decrease cancer risk, decrease inflammation, which is at the root of all autoimmune diseases, and slow down the aging process. You can do this!
Yes, breakfast is an important meal, but notice it never said WHEN you have to eat it. All you will be doing is delaying your breakfast or "breaking your fast" until later in the day. If you eat intelligently and stay away from processed foods, sugars and too much meat, you will be on the road to feeling MUCH better. Good luck!
Thank you so much for this advice I do snack at night time and may be too hard in my self to start but I’m trying to just eat between 10 and 6 so fasting for 16 hours straight away , I feel ok at min then you saying about processed food I had ham sandwich today so I shouldn’t have ham any more ?
Ham is a no/no. Ham is a processed food and is not really healthy for anyone, nevermind someone with PBC. If you research it, you will find it contains nitrates which are classified as a carcinogen. If you eat a small amount, say, once every couple months, you'll probably be ok, but as for me, I eliminated it.
Spend some time on the internet studying the Mediterranean diet. That is generally the diet most hepatologists and the American Liver Foundation recommend for us. In short, the less meat, processed foods, sugar you eat, the better. I started looking up recipes in my spare time and discovered some veggie based meals I really liked. It's doable....and your health is worth it!
same here shezza, i really feel your agony, im exactly the same and nothing works, im now begging my doctor for a transplant, i have gone plant based which i think helps a little but still does not take it away, ive not slept in over a week and was actually hallucinating from sleep deprivation, my skin is actually raw from rubbing the itch and its all over, i have no skin on my eyelids which is very sore so if anyone has any ideas please let me know also as its made me feel suicidal, god bless you all x
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