I am a mom to 3 daughters. They are 27, 24 & 19. I am grandma to 1 granddaughter whom is 4. Been with my hubby for 11 years(?) I was diagnosed in 2004. I am on urso. Bloodwork every 3 months. Sometimes I get tired of doing the bloodwork. And pause for a bit.
As of late I am SUPER itchy. I can drive me insane! I get exhausted exhaustion! If I do 1 thing, I need a nap or sleep... if I do anything that takes alot of effort, like my granddaughter's birthday, event hough it was just the 3 of us. It will take at least a couple days to recuperate.
Do any of you have bad teeth?
Do any of you have exhausted exhaustion?
What about this insane itch? And where?
Written by
GWilliams76
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Hi , there are quite a few symptoms linked to PBC & all those you have mentioned are unfortunately most definitely side effects of PBC . I have suffered them all with more besides but one of the most common is exhaustion ( extreme fatigue) . Some relate itching to Urso but that wasn't the case for me I was none responsive to Urso my itching was due to progression of PBC & my bile ducts leaking bile into my blood stream then crystallises and led to extreme puritius , and yes I have had many problems with my teeth due to another autoimmune disease brought on by PBC called sjogrens syndrome which basically means I don't produce enough saliva & tears which causes faster decay to the teeth & being more prone to thing like conjunctivitis. Eventually my bile ducts ceased to function much at all , resulting in all my symptoms becoming extreme & no quality of life and needing a transplant . Firstly may I say that is by no means the outcome for many so please don't panic all these symptoms many can find treatment & meds that either stop them or dramatically reduce them so please speak to your consultant & inform them of your suffering they can & will help . I know blood works can become tedious but they are so important & tell them how PBC is effecting the body/Liver , the list of things they check in your blood is huge ... please never take time out from having Yr bloods done things can be missed or not picked up on without regular blood tests ... please please keep up with them .
With regards to the itching my heart most definitely goes out to you so do seek help for this many meds work for people , but here are some self help tips :
Most definitely use an emollient all over Yr skin keeping the skin moisturised does help reduce the itch any dryness most definitely irritates. I found Aveeno fabulous & still use it but also Aqueous menthol for areas that also gave a burning sensation along with the itch .
Cooler showers/baths so as not to overheat the body .
None chemical body washes & shampoos.
With regards to Yr exhaustion unfortunately there is no cure , you just need to listen to Yr body & sleep when you need too , pbc can reduce the amount of energy we produce & the only way to recharge is rest/sleep life style changes are inevitable whenever you go through any period like this although gentle exercise is good for helping to stimulate energy like swimming ( sounds mad I know but it does ) you just need to learn Yr limits so as to conserve energy for times like social events etc . You will need to be a little more selfish & put yourself first so you can still enjoy those family time's together . Many say that certain foods need to be cut out I cannot comment on that due to nothing making any difference to my progression but like I said earlier it's different for everyone we are all different but please speak to your gp/consultant about your symptoms they aren't mind readers & only know what symptoms you've got if you tell them because many never get symptoms this in turn will not only get you the help you need , help with your mental state with what you are dealing with & most importantly check for more things in Yr blood work like rising levels of Yr LFTs whether Yr urso needs increasing or decreasing etc etc & keeping a closer eye on you . My blood works went to monthly one's alongside monthly consultations & I was still working through it all but did reduce my working hours because my health comes first .
I wish you all the very best & hope you talk to somebody . Please note that the PBC foundation are there to help too so reach out they have much advice & help to offer x
I started itching in 2014 but finally found the right combination of medication some 2 years later. Colestyramine is the first medication that is started, then various medications can be added such as Rifampicin (which was a game changer for me) Naltrexone (which did not suit me) then there is Sertraline an anti depressant and Gabapentin which apparently blocks the messages to the nerve endings - if I have remembered that correctly.
There are tools in the specialists kit which can help and once you get control of the so called itch of PBC it may help your sleeping pattern which in turn may help the fatigue. Worth getting your thyroid checked just in case. It can also be helpful to get your Vitamin D levels checked as well.
If you are a facebook user go on to the PBC Foundations page and if you scroll down you can find a conversation with Professor Jones last Thursday. I am sure he talked about the problems of fatigue sometime during the hour long presentation.
As vicary says problems with your teeth can come from Sjorgrens so definitely worth getting that checked out.
I only get an annual blood check but then I am in the UK under the NHS system.
I suffered from horrible itching. I was up all night scratching. So, I got no sleep. I had so many sores everywhere. It was very debilitating. I went through all the meds and finally landed on 50mg of sertraline (zoloft). It was the miracle for me. I no longer have ANY itching. I am so thankful to God for my amazing dr.s and getting my life back!
I get slightly fatigued in the early afternoon. Unfortunately I am not able to nap at all( I homeschool my grandkids that we have custody of) Usually I combat it with lots of caffeine.
I eliminated all sugar and processed food from my diet. I eat only meat, cheese and eggs. It seems to help with the fatigue immensely. I have more energy than ever. I am 50 and coach my granddaughters soccer team! I am leader of children's bible quizzing at our church. I work in my yard. I chop firewood to heat our house in the winter.
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Which tests do your providers recommend annually?
AMAs in blood no other tests show it
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