I'm home. I don't have Lupus!

Wow . . . glad you found Dr. Wonderful. Several of us have been dx'd and undx'd. I hope you stay undx'd and I hope there is a great trtmt for your biliary C. It will be nice to see you feeling better again!!! I hope you'll hang around and keep us posted about your progress. Blessings!

Hi Carol,

  I'm glad to hear you don't have Lupus and will be hanging around with us. I'm sorry to hear of your new dx though...((Hugs)). If you google "Primary Billiary Cirrosis" you will find alot of info on it.

  It's great that you like your new Rheumy and he is getting you answers and starting you on a good treatment plan. I hope you will start to feel much better soon.

  Please take care and let us know when you have to have a liver biopsy. You will be in my thoughts and prayers.

                                               Love ya, Babs

Hi Carol,

  He sounds like a great doctor! I'm sure he will take good care of you... .

  I'm doing pretty good. Tks for asking. My dad has his colon surgery on the 15th. I start Cardiac Rehab on the 17th. I have been working more hours and my body is feeling it, so I will be slowing down. I have to take care of my dad when he gets out of the hospital so I need to save my enery.

  Please take care and good luck with the tests on your liver. I'm praying for you to get alot better.

                                                       Love ya, Babs

Hi Okie
I am glad that you don't have lupus and that you found a wonderful doctor. It is so hard to find a doctor that is good.

Hi Judi lol, yeah that's pretty much the story of my life. But than most guys my age are married anyway. I used to ask for a rich man now I'll just settle for one that's breathing .

Hi Omega, Thanks for your support. Yes I was really nervous after my last rheumy. I was stressed out the whole morning imagining what a nightmare I had in store so it was a pleasant surprise.

Hi Kris, thank you sweetie it goes both ways. I will never be far away if anyone here needs me. I know I can always count on any of you too. I will keep everyone updated.

hugs

carol 

Thanks Patty, I actually tried to find a support group for it but all I found was ones for hepatitis and alcohol related cirrosis. Which isn't the same thing. I have to see my regular pcp tomorrow for a chest xray to check the pnemonia so I'm sure she'll have somthing to tell me. Yes it is getting cooler. in fact yesterday it was down right cold in here in the morning. I hope you are feeling better with the weather changes.

love ya

carol

(((Hugs))) Carol. I'm SO glad your new rheumy was so wonderful! It sure makes dealing with any problems easier when they talk to you like you are intelligent! That's great to here about your dx not being lupus, but strange feeling at the same time. Maybe with this more accurate dx, he'll be able to get you feeling better. I do expect you to stay here though! Besides, obviously your symptoms with this new dx are going to be very lupus-like, so we still need you! Take care and keep us updated!

Carol,

I don't know what to say except welcome to the world of PBC.  I lived with the diagnosis of lupus for about a year and was diagnosed in August with Primary Biliary Cirrhosis and my gastroenterologist (which is the kind of doc you need to see about this) told me I probably never had lupus and that the high ANA and alk phos were most likely from the PBC and NOT lupus.  I thought I was the only one with this PBC.  I just happened to log in here tonight and try to catch up on what had been going on with everyone and your post was the first I opened and I was shocked to see someone else with my diagnosis as well.  I also had to have a liver biopsy.  When you see your gastro doc, ask for an AMA blood test.  It is the confirming (99.5% of the time) for PBC.  I am now on medication to halt/hopefully stop the PBC from progressing.  It was weird to find I didn't have lupus but also frustrating to find out I had a rare autoimmune liver disease.  Look up PBCers online and there is a LOT of information on the disease.  I wish I could say I am happy with our diagnosis but I am still struggling with the emotions of having been wrongly diagnosed with lupus and living with the pain and horrible fatigue for a year with no real relief from any of my docs for it.  Now, with the new diagnosis, I am working with my gastro doc to get me on a regimen of med Ursodiol and adjusting dosages and such.  I hope your pneumonia is all cleared up and that you are feeling better.  Keep us updated on how you are doing.  I will be reading here regularly as even though we don't have lupus, the support and encouragement and loving people are wonderful here.  I read the posts and the community feeling here is so great.

Hi Carol--
Congratulations on not having lupus, sorry about the PBC. Liver disease is a real pain sometimes and actually runs with a lot of ofther AI problems. Even endocrine problems. In a way, its another type of lupus, but not as bad usually short term. It can drag on and on till you're an old granny with a liver like shoe leather and you can still be up and kicking. It's amazing how much abuse our livers can take, after all, look at all the meds we take that hurt them. Its good he found out the right thing. My liver problem also causes sjogrens, and my mistreatment for my liver condition in the past could have caused lupus, it certainly made me much sicker. The only thing I can really say that is negative that happens with people with any type of liver problems is that they try to deny you pain medicine and expect you to suffer more, because they consider pain management the least important part of treatment usually and they want you to keep off everything. Diabetes tends to run with liver problems, as does high cholesterol, and you have to be very picky about which meds to take if you get these problems, because many will make your liver condition worse. The key is to get a really good hepatologist, not a gi guy but someone that specializes in livers, unless the gi comes extremely highly recommended. I go to Borland-Groover every year or so and it is a research clinic that only does GI and specializes in livers and they are up on all the latest advances. It's good to go to a place like that at least once a year to make sure your doc is up on things because I always get new info when I go. For my family, complications from liver disease tend to shorten our life spans by twenty to thirty years, but treatment is getting much better so I think this will change, I also have a different problem (NASH). Not much is known about NASH and NAFLD but as many as one in four people with NASH will go on to get liver transplants. I can tell you that prednisone helps me a TON, including my liver, and also that I have multiple endocrine deficiencies which is common with NASH. Well, take care and its a good thing the doc found the PBC,you might want to check the incidence of the various ai diseases with PBC just to be sure before you discontinue meds, especially if you have other non-liver related problems. Hopefully you'll get treatment and now they can really get you the right tx. I'm happy for your proper diagnosis and wish you the best on you liver. It must feel good to be home, I think that's the best part of vacations.

Carol, I'm so glad you got a great rheumy the second time around and that he was able to give you a few answers. You had better stick around here - it wouldn't be the same place without you. All of these AI diseases are so similar, as I'm sure you realize - we all share lots of symptoms and treatments. I'm sorry to hear about your liver and that there isn't a lot that can be done for it. I'll have to do some reading about it. Take care Love and hugs

Carol,

  I'm sorry to hear your about your friend. I bet you are pooped! Tks for popping in for a sec. You rest, take care and update when you can. You are in my thoughts and prayers.

                                                        Love ya, Babs

Rosie,  I'm so sorry to hear about your sister! I hope they can get this figured out and on the right treatment to help her. She will be in my prayers. Update us when you can sis!

                                                           Love, Babs

Marji . . . they transfered SIL from rehab back to hospital again to try and relieve swelling. Nothing has been said about draining ascies . . . they were talking about diuretics! I'm going to look that up and see if I can bring her some info. Thanks for the suggestions. Blessings!