New to the group

New to the group

Hello everyone, new to the group but not autoimmune diseases. Diagnosed in 1999 with PBC, in 2010 overlap of AIH, Ulc. Col., Sjogren's, Fibromyalgia, Skin Lupus, Hypothyroid, Osteoarthritis, and a few other conditions. The list goes on. Always browsing Internet for new information and of course support is always appreciated. I've been a member of the PBCers Org. since 2000, love them! Excellent group and I've formed many great friendships. Just wanted to say hello to this forum if you don't mind me lurking. My name is actually Ivette (pronounced with an "E"), but used middle name Della so I wouldn't confuse the groups and repeat myself. I've had hepatic encephelopathy, memory problems, portal hypertension from the autoimmune liver diseases but controlled with meds. Fortunately even though I get a lot of stuff, I respond well to meds. I guess that's my silver lining. Greetings to all. By the way, I'm from Chicago, 53 yrs old.

14 Replies

  • Hello Della

    I am new to this group also.

    I was diagnosed with PBC a week ago. When I did my first desperate post many were supportive. I'm still coming to terms with my condition so will also be "lurking" as you put it.

    Best wishes

  • Hi Lindy, sorry to hear you are newly diagnosed but you're off to a great start reaching out for support and learning about PBC. I was diagnosed back in 1999 so there was not as much info available as there is now, but I still read as much as I could to learn more. Keep in mind as you do this to weed out the bad stuff as it may not apply to you. I hope you are at a very early stage and will remain asymotomatic for a long time. Feel free to ask lots of questions. Ask for copies of your labs, any other tests and keep notes of your dr visits. You will be amazed how much you learn to decipher all that as time goes by. I calculate my MELD score every time I get bloods drawn. I like to know, we're all different. Hope you found a dr you trust and partners up with you in your health going forward. That's very important. I'm on my third hepatologist (just switched on Friday) so don't hesitate to do what's best for you and make the necessary changes if you're not happy with the medical team you have. All the best, Ivette, Chicago

  • MELD?

  • MELD stands for model for end-stage liver disease (6-40) created by Mayo Clinic. It's an algorithm that uses Bilirubin, INR, and Creatinine levels to calculate your score. Anything under 1.0 you enter 1 (for example, if your creatinine is 0.88, you would enter 1, INR is usually 1 and goes up slowly to 1.1 and so forth, that has to do with clotting, and lastly Bilirubin). You can do this in your head after a while. If your INR is 1, other two are under 1, then your score would be a 6 which is really good. Soon the sodium levels will be added so we are consistent with the U.K. (UKELD) and I believe other countries are using. Hope it all makes sense. Take care. Ivette

  • Lindy, forgot to mention, MELD score is how you get on transplant list if (high scores) and when the time comes, which some people may never progress to that stage. Stay positive and let us know how you are doing. Ivette

  • Thank you Della. I will bear that I mid if I get to that stage. Before diagnosis I had not heard of PBC so I have a lot to learn.

    I'm working on positive attitude now. Initial reaction was that I'd been given a death sentence. I have no symptoms. This was discovered through a routine blood test. So it was a complete shock.

    I have autoimmune thyroid so I am fairly used to "fighting my own corner" so to speak.

    With help and information from people like yourself and my doctors I WILL get there.

    Thank you so much for your response. I have a feeling we will be chatting again

    I hope your health improves and symptoms are well controlled.

    Best wishes

    Ps. I'm in the UK. Yorkshire. (Been cold and wet and windy for months) 😊

  • I'm Yorkshire too. Just been diagnosed and trying to come to terms with it. Any advice welcome

  • As Lindy I was diagnosed last week. Only clue was my liver enzymes were high.  This sight is most helpful as my thoughts are flying everywhere. Tks for yr tips; already have a list for my dr.  Carleton Michigan 💝

  • Delisle, good luck on your dr appt. Feel free to ask any questions.  It will get easier. You will learn to live with PBC, don't let it consume you with fear, but do learn more because knowledge is power. Having a list ready at your doctor appts is always a great idea. There are no insignificant questions ever. That's how we learn about our illness and cope as time goes on. Wishing you all the best. I'm in Illinois so we're neighbors. Take care, Ivette, Chicago 

  • Greetings Della, and thank you for delurking! I am also in the US - outside of Washington, DC. You have a great attitude despite your many challenges....I am new to diagnosis (January) and have CVID (an immune deficiency), PBC, and NASH. My main problems are pain (from the NASH) and fatigue, as well as healing issues from the CVID. This forum has been a game-changer for me.

    Have a great day~be well!

  • Hi Jenny, thanks for your reply. Sorry to hear about your pain and fatigue. Those are my worst two problems with GI symptoms (mainly chronic diarrhea). I take Lyrica for Fibromyalgia and it helps with joint pain. I also use Lidoderm pain patches as needed for low back, hips and shoulders. For fatigue, dr prescribed Nuvigil to keep me awake during the day as I was sleeping my life away, but find it doesn't help much or I'm on a low dose. I still take one nap during the day after sleeping for 12-14 hours at night. If you have any questions, feel free to ask. I've been on a lot of meds so at least I can share my personal experience. We are all different and therefore react differently to meds, but knowledge is power and we are our own best advocates. All the best, Ivette, Chicago

  • Hello Della

    My goodness what a lot of autoimmune problems you have. I have 3 that I know of and possibly another on its way as I notice my eyes getting dry.

    I am pleased you respond well to medication - I do too so that`s a blessing and you never know when a medical breakthrough will happen. We hear of a lot of clever brains are applying themselves to our cause.

    Looking forward to hearing your experiences as they may help some of us.

    I live in London and send greetings to the `windy` city. Diane

  • Thank you Diane. Sadly I only listed a few. I'm a big autoimmune mess, but thankfully I'm stable. I've learned to pace myself and listen to my body more. I stopped working 3 years ago and that has helped having less stress. I started gardening a little and do a little more each year. I was very active before PBC affected my life. I had 10 great years after diagnosis but I can't blame it all on the PBC, I developed the overlap autoimmune hepatitis and a host of other AI conditions. I suffered a mini stroke in 2012, but bounced back, just struggled with 2 years with horrible migraine headaches. I get occipital nerve blocks every 6 months-year when it gets unbearable. They call it chronic small vessel ischemic disease. It's always one thing or another. I've learned to take it all in stride. What doesn't kill you makes you stronger, right? I have a great support system at home, family and friends. oh and a great therapist. 🙂 Take care and thank you for replying. Ivette

  • Hi, new to the group. I was diagnosed in December. It's all a bit overwhelming. Having subtle pain in burning over my liver. Is this normal? I had an ultrasound however, it was normal in size. Thank you.

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