Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 GOOD NEWS FOLKS - THE SILENCE IS BROKEN. DONI-MARIE / JO / ALL YOU ALL / YOU MUST HAVE YOUR ANGEL WINGS WORKING OVERTIME. (DAVE) MY HUBBY AND I HAD A KIND FUSS BUT AFTER TIME AND HIS READING THE LINKS DONI-MARIE SENT TO ME REALLY HELPED. COMMUNICATION IS THE BIG PROBLEM. WE OFTEN JUST DON'T TRY ENOUGH. ALSO, BOTH OF US ARE NEW TO THIS DD AND WHAT IT CAUSES IN OUR LIVES. I REALLY LOVE THIS MAN! THOSE LINKS MAY VERY WELL HAVE SAVED MY SANITY AND HIS TOO! AS A MATTER OF FACT - THIS GROUP MAY BE THE BEST THING THAT HAS HAPPENED TO ME AND MINE. THANK GOD I FOUND YOU. LOVE TO ALL, MARCY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2002 Report Share Posted May 21, 2002 WE ARE ALSO VERY LUCKY TO HAVE YOU HERE WITH US TOO MARCY!!!! YOU MAKE A GREAT ADDITION TO THE GROUP. NOW HOW ABOUT A JOB AT THE CFF CLUB? CINDY > GOOD NEWS FOLKS - THE SILENCE IS BROKEN. > DONI-MARIE / JO / ALL YOU ALL / YOU MUST HAVE YOUR ANGEL WINGS WORKING > OVERTIME. > (DAVE) MY HUBBY AND I HAD A KIND FUSS BUT AFTER TIME AND HIS READING THE > LINKS DONI-MARIE SENT TO ME REALLY HELPED. COMMUNICATION IS THE BIG PROBLEM. > WE OFTEN JUST DON'T TRY ENOUGH. ALSO, BOTH OF US ARE NEW TO THIS DD AND WHAT > IT CAUSES IN OUR LIVES. > I REALLY LOVE THIS MAN! > THOSE LINKS MAY VERY WELL HAVE SAVED MY SANITY AND HIS TOO! AS A MATTER OF > FACT - THIS GROUP MAY BE THE BEST THING THAT HAS HAPPENED TO ME AND MINE. > THANK GOD I FOUND YOU. > LOVE TO ALL, > MARCY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2002 Report Share Posted May 21, 2002 THANKS! A JOB? GEE - I DUNNO - WHAT ARE THE REQUIREMENTS? MARCY Re: GOOD NEWS WE ARE ALSO VERY LUCKY TO HAVE YOU HERE WITH US TOO MARCY!!!! YOU MAKE A GREAT ADDITION TO THE GROUP. NOW HOW ABOUT A JOB AT THE CFF CLUB?CINDY> GOOD NEWS FOLKS - THE SILENCE IS BROKEN.> DONI-MARIE / JO / ALL YOU ALL / YOU MUST HAVE YOUR ANGEL WINGS WORKING> OVERTIME.> (DAVE) MY HUBBY AND I HAD A KIND FUSS BUT AFTER TIME AND HIS READING THE> LINKS DONI-MARIE SENT TO ME REALLY HELPED. COMMUNICATION IS THE BIG PROBLEM.> WE OFTEN JUST DON'T TRY ENOUGH. ALSO, BOTH OF US ARE NEW TO THIS DD AND WHAT> IT CAUSES IN OUR LIVES.> I REALLY LOVE THIS MAN!> THOSE LINKS MAY VERY WELL HAVE SAVED MY SANITY AND HIS TOO! AS A MATTER OF> FACT - THIS GROUP MAY BE THE BEST THING THAT HAS HAPPENED TO ME AND MINE.> THANK GOD I FOUND YOU.> LOVE TO ALL,> MARCY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2002 Report Share Posted May 21, 2002 MARCY THINGS GET ROUGH SOMETIMES BUT THEY CAN MOST TIMES BE FIXED. I AM SO GLAD THINGS ARE BACK TO NORMAL FOR YOU AND YOUR HUBBY. YOU ARE NEW TO THESE DDS SO IT WILL TAKE A WHILE FOR BOTHOF YOU TO UNDERSTAND WHAT IS GOING ON WITH YOUR BODY. DON'T BEAT YOURSELF UP FOR SOMETHING YOU CAN NOT CONTROL AND ALWAYS REMEMBER THAT IT IS HARD ON YOUR HUBBY TOO HE LOES YOU AND UNDERSTANDS EVEN LESS THAN YOU DO ABOUT WHAT IS GOING ON WITH YOUR BODY. IF IT WAS SOMETHING YOU COULD SEE IT WOULD BE EASY TO UNDERSTAND BUT YOU CAN'T SEE THIS SO ITS HARD TO UNDERSTAND. TALK TO HIM TELL HIM WHAT IS GONG ON WITH YOU HAVE HIM GO WITH YOU TO THE DRS EVERY SO OFTEN. I DON'T KNOW ABOUT THE REST OF THE LIST BUT I HAVE A TENDENCY TO PUSH MY HUBBY AWAY AND TRY TO DEAL WITH IT ALL BE MYSELF THAT DOESN'T WORK. LUV JO http://community.webtv.net/jowaca/JOSFAVORITEPICTURES GOOD NEWS FOLKS - THE SILENCE IS BROKEN. DONI-MARIE / JO / ALL YOU ALL / YOU MUST HAVE YOUR ANGEL WINGS WORKING OVERTIME. (DAVE) MY HUBBY AND I HAD A KIND FUSS BUT AFTER TIME AND HIS READING THE LINKS DONI-MARIE SENT TO ME REALLY HELPED. COMMUNICATION IS THE BIG PROBLEM. WE OFTEN JUST DON'T TRY ENOUGH. ALSO, BOTH OF US ARE NEW TO THIS DD AND WHAT IT CAUSES IN OUR LIVES. I REALLY LOVE THIS MAN! THOSE LINKS MAY VERY WELL HAVE SAVED MY SANITY AND HIS TOO! AS A MATTER OF FACT - THIS GROUP MAY BE THE BEST THING THAT HAS HAPPENED TO ME AND MINE. THANK GOD I FOUND YOU. LOVE TO ALL, MARCY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2002 Report Share Posted May 21, 2002 WE LOVE YOU TOO. THIS DISEASE IS VERY UNPREDICTABLE. IT ALSO TAKES A WHILE TO LISTEN TO YOUR BODY AND WHAT IT'S TELLING YOU. IT'S VERY FRUSTRATING BUT TRY TO PLAN WHAT YOU HAVE TO DO AND WHAT YOU WANT TO DO. SOMETIMES IT HELPS TO WRITE THINGS DOWN. GET A CALENDAR THAT YOU CAN WRITE ON AND PUT HAVE TO DO'S ON THAT, DOC APPOINTMENTS PAYMENTS WHAT EVER. YOU'LL FIGURE OUT WHAT HELP MAKES THINGS EASIER TO COPE WITH ACTIVITIES OR JUST HAVING TO LIE DOWN. IT TAKES TIME BUT IT ALL WORKS OUT. TALK ABOUT THINGS WITH EACH OTHER..I GUESS I'VE GONE ON ENOUGH. MAYBE YOU DON'T WANT ANY OF THESE SUGGESTIONS JUST DELETE IT. NO BIG DEAL. HUGS SHARON When your up to your butt in alligators, it's hard to remember your 1st objective was to drain the swamp. Sharon Re: GOOD NEWS GOOD NEWS FOLKS - THE SILENCE IS BROKEN. DONI-MARIE / JO / ALL YOU ALL / YOU MUST HAVE YOUR ANGEL WINGS WORKING OVERTIME. (DAVE) MY HUBBY AND I HAD A KIND FUSS BUT AFTER TIME AND HIS READING THE LINKS DONI-MARIE SENT TO ME REALLY HELPED. COMMUNICATION IS THE BIG PROBLEM. WE OFTEN JUST DON'T TRY ENOUGH. ALSO, BOTH OF US ARE NEW TO THIS DD AND WHAT IT CAUSES IN OUR LIVES. I REALLY LOVE THIS MAN! THOSE LINKS MAY VERY WELL HAVE SAVED MY SANITY AND HIS TOO! AS A MATTER OF FACT - THIS GROUP MAY BE THE BEST THING THAT HAS HAPPENED TO ME AND MINE. THANK GOD I FOUND YOU. LOVE TO ALL, MARCY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 , This is indeed progress, and I'm so glad for you. Take the changes in meds slowly, and all the luck in the world for success. Hugs, MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 Hi , It's good to hear you will be lowering the prednisone. I know after 6 months of 40 mg I was going completely crazy. My hands were shaking as if though I was on drugs. What am I saying, I was on drugs! Anyway, now I am on 10 mg since July and waiting for the doctor to get back to me regarding further decrease. I was on imuran , when first diagnosed 17 years ago. They also told me I would be on it for life, but I was able to get off of it. Now, I did not get it for autoimmune hepatitis, and there's a possibility you will have to continue with it, but who knows what will happen in the future. Just keep on being positive and things will get better. Good luck. Mojo good news I got my lab results from Monday and they were great. One of my liver enzymes was slightly elevated (AST was 36 and it should be below 30), but everything else was normal. My GI doc told me that he would start tapering my prednisone down further if my labs were good. He was not in the office on Tuesday but I should be hearing from him today. I am so anxious to begin the process of getting off of the prednisone. My face is beginning to show signs of the typical moon or roundness that goes along with long term prednisone use. My weight was up 10 lbs, although for some reason Tuesday morning it was down 5 lbs from what it had been on Monday. The sudden drop just convinces me all the more that my weight being up is most likely just from the prednisone. I know I shouldn't really complain because I've really been lucky to have as few side effects as I've had from the prednisone. However, I will be glad to be rid of it. Of course, it will be several months before I can get off of it completely but it will feel so wonderful to be moving the dose down! I asked my doctor about the Imuran and whether he would take me off of it sometime down the road if my liver enzymes stayed normal once I was totally off of prednisone. He told me that I will have to stay on the Imuran for life even if my liver enzymes are never elevated again. I am on a low dose, just 50 mg a day. He said he'd really like for me to be on 100 mg a day but he dropped it to 50 in mid August when I had my last attack of acute pancreatitis that landed me in the hospital. I suspect that if I can go a few months without a bad pancreatitis attack, he may raise the Imuran. By the way, for those of you who don't know, I am on prednisone and imuran because I have autoimmune hepatitis (AIH). Imuran is an immunosuppressant and comes with its own side effects but all in all it is safer than long term prednisone. Anyway, just wanted to share my good news. W"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 -Hi , Glad to hear your good news!!!! It's always good to hear someone is doing well!!! I know how you feel, I'm trying to dose down my prednisone too, my face is puffy etc. Keep up the good work and congratulations!! Yeah!! -- In LUPIES , " Weston " <karenw@p...> wrote: > I got my lab results from Monday and they were great. One of my liver enzymes was slightly elevated (AST was 36 and it should be below 30), but everything else was normal. My GI doc told me that he would start tapering my prednisone down further if my labs were good. He was not in the office on Tuesday but I should be hearing from him today. I am so anxious to begin the process of getting off of the prednisone. My face is beginning to show signs of the typical moon or roundness that goes along with long term prednisone use. My weight was up 10 lbs, although for some reason Tuesday morning it was down 5 lbs from what it had been on Monday. The sudden drop just convinces me all the more that my weight being up is most likely just from the prednisone. I know I shouldn't really complain because I've really been lucky to have as few side effects as I've had from the prednisone. However, I will be glad to be rid of it. Of course, it will be several months before I can get off of it completely but it will feel so wonderful to be moving the dose down! I asked my doctor about the Imuran and whether he would take me off of it sometime down the road if my liver enzymes stayed normal once I was totally off of prednisone. He told me that I will have to stay on the Imuran for life even if my liver enzymes are never elevated again. I am on a low dose, just 50 mg a day. He said he'd really like for me to be on 100 mg a day but he dropped it to 50 in mid August when I had my last attack of acute pancreatitis that landed me in the hospital. I suspect that if I can go a few months without a bad pancreatitis attack, he may raise the Imuran. > > By the way, for those of you who don't know, I am on prednisone and imuran because I have autoimmune hepatitis (AIH). Imuran is an immunosuppressant and comes with its own side effects but all in all it is safer than long term prednisone. > > Anyway, just wanted to share my good news. > > W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2003 Report Share Posted October 18, 2003 That's great news ! Good News Well folks the new rhume is great. He sat and discussed my and my symptoms for an hour yesterday:) He put me on 20 Mg of prednesone. BELIEVE this or not he said you and I are going to spend a whole lot of time together - he is going to see me weekly until we get this calmed down and said then we will go to every couple of weeks and then we will see about monthly. THANK YOU GOD and ALL. He also is going to completely keep all other docs informed and handle that info. I am so happy not feeling better physically yet at all BUT I AM FEELING EMOTIONALLY wonderful. More later on specifics. C. R Clifton Mommy and COO WYIM, WIth You In Mind www.wyim.com The gift EVERYONE will talk about. Get the GIFT! "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2003 Report Share Posted October 18, 2003 -Sounds like a keeper !!! Thanks for sharing the good news! Hope your pain fades quickly, -- In LUPIES , Clifton <nrclifton@s...> wrote: > Well folks the new rhume is great. He sat and discussed my and my symptoms for an hour yesterday:) He put me on 20 Mg of prednesone. BELIEVE this or not he said you and I are going to spend a whole lot of time together - he is going to see me weekly until we get this calmed down and said then we will go to every couple of weeks and then we will see about monthly. THANK YOU GOD and ALL. He also is going to completely keep all other docs informed and handle that info. > I am so happy not feeling better physically yet at all BUT I AM FEELING EMOTIONALLY wonderful. > More later on specifics. > C. > > > R Clifton > Mommy and COO > > WYIM, WIth You In Mind > www.wyim.com > > The gift EVERYONE will talk about. > Get the GIFT! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2003 Report Share Posted October 18, 2003 - How wonderful for you!! Keep us all up to date on how you are doing. Isn't is just terrific when you find a doctor who actually knows what they are doing and also cares?!! Good News Well folks the new rhume is great. He sat and discussed my and my symptoms for an hour yesterday:) He put me on 20 Mg of prednesone. BELIEVE this or not he said you and I are going to spend a whole lot of time together - he is going to see me weekly until we get this calmed down and said then we will go to every couple of weeks and then we will see about monthly. THANK YOU GOD and ALL. He also is going to completely keep all other docs informed and handle that info. I am so happy not feeling better physically yet at all BUT I AM FEELING EMOTIONALLY wonderful. More later on specifics. C. R Clifton Mommy and COO WYIM, WIth You In Mind www.wyim.com The gift EVERYONE will talk about. Get the GIFT! "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2003 Report Share Posted October 18, 2003 Whoohoo! , You found a keeper, sounds like to me. Keep us posted on progress. Hugs, MM Quote Link to comment Share on other sites More sharing options...
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