low platelets and WBC

[Addieann]

I was placed on Cellcept for autoimmune attacking my liver. Now I have low platelets and low white blood cells. Seeing the hepatologist in 2 weeks, but I called nurse and she said it was the liver cirrhosis and not new meds. So my regular doc wants me to see a hepatologist today. Now I’m really worried. Anyone have any experience with this or encouraging words for me?? Thanks all!!

[Researchfreak]

hi addieann. If you look up your med you will see possible side effects are low platelets and white cell count. Personally I wouldn’t worry firstly worry achieves nothing, it’s a negative feeling. Secondly when you see the hepatology dep they will answer you questions and reassure you. You did not say what the counts were. And what autoimmune disease are new meds for. What stage and how have you got cirrhosis. . Try not to worry think of the positive . You’re getting treatment , everything could be worse and I’m assuming you’ve got a family and friends alongside of you. Good luck.👍

[Addieann in reply to Researchfreak]

hi.. thanks for your encouragement… I have an autoimmune disease that is attacking my liver. I’ve never drank at all. By the time I was diagnosed a year ago, they said I have stage 4 cirrhosis. So now I’m taking the Cellcept to keep my immune system from completely destroying my liver. My liver enzymes are normal again except alkaline phosphotase. It is still a bit high, but improved. I also take Ursodiol for PBC. I saw a hematologist that my primary doc sent me to see yesterday for labs about low platelets and low white blood cells. He also said it could be the Cellcept.. hopefully it can be turned around… thanks again!!

[Researchfreak in reply to Addieann]

I too have PBC along with Another 4 auto immune diseases. I’m stage 4. It’s very difficult to say the least. But I attend one of the best hospitals in Europe for liver disease. Not that they can cure me but really try to keep me comfortable. I’m going to take part in a DNA trial. So that will be interesting. I just take each day as it comes as you can’t plan with PBC . I’ve been having weekly blood transfusions for 18 months along with other treatments so I’m lucky. You should register with the PBC foundation in uk as the info help and knowledge is phenomenal. Some of the best people in Europe very highly thought of. They travel the world attending seminars . Very interesting reading. Plus you can contact them and get all questions answered. Lovely people. How long you had PBC. . Thanks for replying .

[Addieann in reply to Researchfreak]

What do you do for your PBC?? Meds or just blood transfusions?? Why the transfusions?? This is so new to me. I just found out about this a year ago when they diagnosed my cirrhosis and autoimmune. Actually, I know almost nothing about PBC. Only the little bit I’ve read. My docs never mention it…. I think I am missing something here!! Thanks for replying!!

[Researchfreak in reply to Addieann]

I was diagnosed 2 years ago, like you shocked. . I’ve got quite a medical history. Bleeding stomach, Barrett’s oesophagus causing stomach bleeding, long story. First dr at other hospital was extremely negligent had no idea what was wrong with me. . Anyway I said I didn’t want to see him again and saw a visiting dr from the hospital I’m now at and within 20 min diagnosed me and saved my life . I take Ursodi 2x 500 mg once a day. Beta blockers , vitamins . 6 monthly ultrasound , yearly fibroscan. 2-3 monthly heptology app or as needed. . PBC can’t be cured you can only treat the other symptoms associated with it, and urso slows the disease down. I have severe itching, sickness fatigue muscle wastage along with 5 autoimmune diseases. This is me. This doesn’t mean you will be like me. I’ve got a few more rare things going on hence im not so good, you got a email I could send you useful information . There are lots of good people out there that can help you. You get the information then you take charge. There are PBC organisations in the states too. I’m happy to help but remember your not me and don’t have my medical history.

[Addieann in reply to Researchfreak]

This helps so much to explain what’s going on!! I appreciate it…

[Researchfreak]

pbcfoundation.org.uk/. This is the English site. Hope it’s helpful

[Addieann in reply to Researchfreak]

Thank you!!