Pbc for real now

Was told I had pbc a year ago but my biopsy showed nothing as of yet,I have done blood test every 3 months sense then.In Jan I was put on urso because my levels were increasing and I'm not feeling all that well. Friday I had a second opinion cuz they offered it to me so why not and yes I have pbc but the good news one month on meds and my levels have gone down thank god. Still really tired does this go away or is this what it is? My itching has improved some so just thought the fatigue would also.

9 Replies

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  • Personally the fatigue doesn't reduce you just get used to managing it & adapting. X

  • Renee29, welcome to the club that none of us planned on joining. I am glad that your levels are dropping and the meds are helping you. Unfortunately, the fatigue seems to be very difficult to improve. My doc told me that rest is the key and it cannot be ignored as I did in the past when I would go non-stop.

    For me, the reduced energy level has been one of the harder things to adjust to. I was able to create a work schedule where I teach for 5 hours, rest for 2, then tutor for 3 more hours since I am self-employed. The frustration is that I never know when my body suddenly says "I quit" and I simply cannot do more until I stop and rest.

    I have adjusted my diet and lifestyle to minimize exposure to chemicals. I exercise by walking a mile in my neighborhood (weather permitting) and try to drink plenty of water. These things help to keep the energy level I have, but the reality of this disease means that the current energy level may be as good as it gets.

    I understood better how my life has changed when I asked for my doctor's opinion last October about singing with a community choir that had a limited commitment of 6 rehearsals and 2 performances. He said to go on and try it because it might be the last time I still have the energy to sing with them while working. I enjoyed every minute knowing that I may not be able to join them again this year. Time will tell.

    I do the best when I simply take life one day at a time and enjoy that day's activities. I limit commitments and do what I can along the way. My schedule is simple...work, rest, leisure time with family, etc. I am blessed to have a supportive husband who takes care of the meals and the laundry and helps me with the students.

    From all I have read and learned about this disease, each individual responds differently so it is important to discover what works for you. Create a lifestyle that meets your needs and be nice to yourself. Some people may not understand why you can no longer do what you once did. Simply explain that you have shifted priorities due to life changes and make the decisions that help you live life happily. Blessings and welcome to this group. You will find very caring and supportive individuals who know what you are going through and will help to guide the way.

  • Thank you for the reply and yes I work fulltime

    Job and make it through that but when I get home the day is over no energy. I miss a lot of family stuff on weekends just not enough energy but now I know just need to get a schedule or routine going so I can do some fun things. Again thank you

  • Welcome to this wonderful group. It is good to have a definite answer and respond to Urso so well. For me it is the itching that drives me mad and only occasionally does the wall of fatigue hit. It seems that PBC affects all of us in so many different ways so its best to find what suits you. I never wear long sleeved clothing, if I do even in the depth of winter the itching in my arms becomes even more intense!

    Glad you have caught it early.

    :-)

  • Thank you and I have already learned so much from everyone's post this is a great information group.

  • I too suffer mostly from fatigue. I have been diagnosed for over a decade now and have not seen any increase in any of the other symptoms during that time. The good news is that there is currently a drugs trial going on in Newcastle to try and help with excessive tiredness. If you are anywhere near you could even join in. I don't know the details, but a call to the PBC Foundation should help.

  • Thanks for the reply unfortunately I live in the U.S. and haven't really found we have any studys here.

  • renee29 - have you connected to the PBCers group on Facebook. They are based in the USA, Texas I think but not sure. There main site is to be found on:

    pbcers.org/

    The PBC Foundation is a great source of information joining the members section is worthwhile and free. As you do not live in the UK they may be able to help with questions via email.

    hope this helps.

    best wishes

  • Hello renee29.

    I was diagnosed with PBC Dec 2010 after starting to itch early in 2010. At the time I did suffer from fatigue but never thought much of it due to full-time working.

    I started on urso at diagnosis and about 8wks later at a blood recheck mine had started to drop which was a good sign.

    The itching continued. I did get some initial side-effects from taking urso but within 3mths these had gone.

    I purposely made some lifestyle changes with my husband and at some point during 2011 for me, the fatigue had vanished.

    I do get tired later in the day due to broken sleep at night due to the itch. The itch has improved but it has taken quite some time.

    My bloods 4yrs on with urso have improved greatly and all I have is the itch really.

    Unfortunately the 2 main symptons of PBC do tend to be itching and/or fatigue. Some experience both as you are currently. Ursodeoxycholic acid that we take isn't thought to actually rid these 2 symptons but it can improve and in the odd case it can make it vanish. There are no guarantees though it seems with these irritating symptons.

    Over time you may get into a certain routine of how to deal with it your way the best you can.

    I do hope over time it improves for you.

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