Low wbc with Spleenomegally and aih, pbc along with scleroderma and Lupus

Often I have low wbc and require Granix to pick them up with the help of my hematologist. I take Ursodiol which does help with PBC. For the itching my doc recommends I take Cymbalta with Urso and Cholestyramine powder together and it works pretty well. The powder u need to take it 1 hour before meds or 4 hours after meds. I am currently on the liver transplant list. Meanwhile for acsities I have had 10 paracentesis and 12 thoracentesis. I am in the process of getting a TIPS procedure to decrease sticking me for thora and paracentesis. I developed portal hypertension. Have had 1 amputation to index finger for Raynauds, very dry mouth which has caused tooth infections. Have tight skin because of Scleroderma and hard time swallowing causing esophageal varices. Constant hospital admissions for infections for low wbcs. Peripheral neuropathy and sleeping rest syndrome giving me trouble sleeping with cramping. Its been a rough ride. Hoping after transplant some things will dimish.

3 Replies

oldestnewest
  • Hi hang in there hope you feel better soon I am stage 2 PBC diagnosed in May on URSO makes me a little sick every time I take it but hoping my body adjust overtime .....

  • Good god......I've just got SLE, renal, neuro, (brain, peripheral & autonomic problems), an obstinate stomach that doesn't want to work and a balance problem form hell - Feels like I live mid air in a milkshake. I also have a bit of a large spleen with a firm tail (I'm assuming that bits dead ?) (I've had SLE hepatitis in the past - 'horrific'. and an immune drop out. Not wonderfull either - Gastro/flu/gastro...) Also currently a mouth full of rotten teeth and gums and gooey saliva. Going bald etc etc. The little annoying things just make the grind worse.

    One bloody thing after another and then after that - multiple things on top of multiple things.

    Its easy to loose sight that things can get better - I'm kind of in that zone at the moment. I'm actually trying to sit here and say something profoundly inspirational that might help you feel better but I'm too bitter, twisted and envious of healthy people myself........

    Working very hard on the acceptance bit.....still trying. Its always difficult when the symptom cluster is unbearable and things are always in a state of flux. You don't know what the hell you're meant to be accepting !!!! Let alone whats reasonable to endure.

    I'm so sorry you're going through this hell beyond endurance.

    I do know in theory - things can get better. So - I send you that - that I cant fully grasp myself.

    Hold on to the fact that one day all this might just become a bad memory.

    A liver transplant would have to settle of lot of you're problems down. Truly hoping you get one soon.

    Hoping some knowledgeable PBC people will respond.

    Also hoping they're giving you some happy drugs with all that.

    XOXOXOX

  • Dear Albair123,

    You certainly are having a rough ride. I don't really have any words of wisdom or feel that there is anything I can say that will help but I just want you to acknowledge having read you post. I wish you well and I hope things ease for you. Cx

You may also like...