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

Hi Smokey, Sharen, and Ginny. Thank you so much for responding. It was a releif to get such a possitive Doctor and one that didn't rush though making me feel like an idiot. Sharen, I don't know what I'd do without all of you guys. Your right I'm still taking the same meds as before. pred. and plaq. The rheumy said they were good drugs to be on. He also mentioned flares so I am assuming that in many ways things won't change alot. Except hopefuly they can get me some better drugs to stop this stuff in it's tracks.

Diane, (oceans) I'm sorry that you have PBC but secretly I'm a little comforted that I actually know someone here who has it. My ANA was always 2560 with a nucleolar pattern. So I was thinking more like slceraderma. (thank God it wasn't) Yeah it's been a year for me. Have they been able to help out with the fatigue? It just feels like I have lead in my muscles to get up in the morning and sleep doesn't help most of the time. Thanks for the info on the site and about the AMA I will diffinently do that. You can be sure I'll be hollering to you for answers since you are 6 months ahead of me on this.

Marji, Good Grief Lady! it's amazing you are still walking around with everything you have been through and continue to go through. I didn't get to see my pcp today they just took an xray and I left so I don't know what they are going to do as far as who they will send me to. I won't just settle for anybody anymore though like I did with my first rheumy. That was all a whole new world for me and I wasn't sure if they were all like that or not. As for the meds at this point and time there is no mention of changing my meds. So I'm safe right now.

20 to 30 years shortened life span in your family is terrible. I am glad to hear they are making some progress. The story about your grandma was just aweful!

Rosie, Hippi, Bab's,Barb, Thank you ladies You guys always make me feel like part of the family.

First off Rosie, Don't you dare apologize for hijacking. That was the last thing on my mind. I just hope that your SIL gets the help that she needs. I know the swelling myself first hand. I can also tell you that diuretics did absolutely nothing. I was so swollen I had cracks that were bleeding thru my feet. Plus you talking about it helps me. Yes the rheumy did say it was a fairly rare A/I disease. Hopefully they will figure this out for her and get it stopped. Please keep us informed. I really want to know how she's doing. It may be what is wrong with her lungs as well. I did find out that much that it can cause breathing problems. ((((Rosie))))

Bab's well you said to catch up when I could. It's almost 5 a.m. . Is that soon enough? LOL. I woke up and couldn't get back to sleep so I thought I'd shout back now. It's good to see you posting. You have been missed. Did you start your treatments today? I'm glad your dad had his surgery. The last I had heard he was putting his foot down cuz he was sick of doctors. (boy can we relate huh?) I hope he's feeling better.

Hippi, Your right as far as I can see so much of the AI is the same. In fact at this point I'm still scratching my head trying to figure out the big differences. I think the rheumy said there were about 50 a/i but I'm not sure. I did find out that all the veins on my back and chest are from my liver so that's one mystery solves. but now I want them gone! lol. I love ya too. I hope you are feeling a little better. I havn't caught up on everything yet. My prayers continue to be with you and your son.

Hi Barb! How you doing since the last trip to the hospital? Have you been behaving yourself like you promised? Did you get that purse and shoes for nakita? when is her dance anyway? Thank you for taking the time to respond to my post I know it's so hard for you but I love to see it when ever you can post. Hang in there lady we're all praying for ya. I bet it's getting a little cold up there by you isn't it?

I hope I didn't miss anyone. I just really wanted to take a min. to say thank you to each of you. This is all so new to me and a little overwhelming. You all mean so much with your thoughts and prayers good vibes and of course any info is greatly received.

God bless

carol

Judy, I have underware older than you LOL. actually I'm 50. I was married twice first one WAS tall with black hair. (trust me not worth it) lol. Second one passed away when I was 42. It took awhile but I'm ready to get on with my life. Now all I have to do is get completely healthy and find a good man. Real simple right . Hang in there. You'll find the right one when your ready. You might want to take your sister up on her blind date though. Trust me they usually don't just come knocking on your door.

Boy this thread has taken on a life of it's own.

love ya

carol

You must be a Gemini, I swore if God healed me I'd like to go to africa and help out with the children of parent you died from aids. and I always think about the verse being fishers of men. Of course not quite the way you meant it lol.

God Bless

carol

Oh Rosie, That's wonderful news. That had to help her an awful lot. The fact that she will be getting to go back to rehab is a good sign too. Yes please keep us informed. Thanks for letting me know. 20 lbs in 1 day wow!

God Bless

carol

Carol,

I haven't been on much lately but have been thinking about you and wondering how you're doing. I hope you find a support group for your sirrosis, even if it's online. And unfortunately you still have to deal with all of us whether you want to or not.

The weather here has been absolutely wonderful. Hope you're breathing is better.

(((((hugs)))))

Pat

Hi Carol--
Yeah, I think that you see a hepatologist, but the rheumy may even be the one to treat it. Alot of the liver diseases cause lupus or lupus like problems, though usually your anti-ds-dna is negative because you have secondary lupus, although if it gets bad enough you may develop anti-ds-dna over time, from what I glean through my purusings. I got some narcotics so life is better, for a week or two anyway, and that is long enough to get me to the new endo and hopefully find out and deal with cushings wheich means regular pred, which would be wonderful. The NASH I have--non-alcoholic steatohepatitis, causes lupus like problems, hashis, pituitary and hypothalmic deficiencies, diabetes, obesity, gi problems, gerd, and other wonderful things. Histamines, the things that cause allergic reactions, come from your liver, are triggered by your liver (histo meaning liver, like histology) anyway, it makes sense because the liver decides if what is in your blood is good or bad as it filters toxins from your blood. Its like the clearing house for all the junk in your blood, so liver is very key in this stuff, I would think. Please remember that your liver function is really effected by the types of meds you take, avoid NSAIDs and COX2 type pain relievers. Ultram is the only non-narcotic pain reliever besides and occasional tylenol, that I can take. Ibuprofin is a definite no no no matter what any fool says, a hepatologist will tell you that, though most other docs think tylenol is worse. Tylenol is actually the safest, but overdoses of it are very bad for the liver and they used to think it was completely safe and found out it isn't, but it is the lesser of the evils. Ultram has none of that stuff in it. Best pain stuff is narcotics, with least amount of tylenol in it. Medicines taken by mouth will irritate liver, those taken by other means, patch, nasal spray, eye drops, IV or IM will cause less problems for me. Any med I start I take a half dose and only raise it if my symptoms are not controlled and I'm not having a bad reaction. A bad reaction (hives, etc.) may not occur for two months or more, as it may take that long for the medicine to back up in your system. Effexor was bad on my liver, though I was able to take it for about six months or more before I became intolerant and allergic. I don't know what Evista or Triamterene are but you might want to check on them and see if there is a more preferable medication to take, one that is processed by kidneys more than liver. The cool thing about plaquenil is that it is processed by kidneys primarily and may prevent cancer by suppressing TNF (tumor necrosis factor) per a post of a press release here. I find prednisone helps my liver. I don't think docs know a ton about these liver autoimmune complexes so I would definitely keep checking the web for new advances. Borland Groover's site has a lot of good timely info. Also, your COPD may be related to the liver, I also have it with its onset concurrent with onset of my liver disease. Asthma is caused by histamine reactions like an allergic reaction, eventually bronchial tubes get scarred due to constant allergic inflammation.

Rosie, if they drained it in a day, they did it with a needle likely, from the belly. I don't know what they do for legs. The swelling in the belly can actually press on organs and make you sick and I think even be life-threatening depending on what it presses on. I'm glad they got rid of that. She must be feeling better. Now hopefully with drugs they can keep it off.

Take care Carol, Rosie, and know you are in my thoughts and prayers. Carol, you can try the hepatitis group here for some questions, though there are some very very sick people there and sometimes it is hard to get responses, there are some really caring people there. When I was sick, I didn't like to reply to certain questions because I didn't want to scare them because I was so sick and my prognosis was not good at the time.