Guest guest Posted March 25, 1999 Report Share Posted March 25, 1999 Penny, I'm praying for you! Love ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 1999 Report Share Posted March 25, 1999 Penny, You are definitely in my prayers. It sounds like the abscesses are the culprit for the need for antibiotics? If this is so, I wouldn't think that it is directly related to the cholangitis, though I have never had an episode of cholangitis. If the antibiotics are necessary for the abscesses to heal, I would do it ASAP. You don't want infection to go too long. As for the fever starting later in the day, I think that is common. My kids and I always have lower temps in the AM. This is probably from the metabolism slowing down at night. If your resting temp is lower due to this, it would take some time for the infection to bring it up to " fever " level. Just some thoughts. Dan On Thursday, March 25, 1999 7:37 AM, PR Weller [sMTP:weller@...] wrote: > Hi, > First let me say that this will be a long post, but I really would appreciate your help (and please ignore the typos). > > Since Mar. 5th I have apparently been having a flare up of cholangitis--actually the first documented one I've had. In April of 1997 I was a month or two away from a tx, last Sept. the tx nurse saw me and said...see you in a year. That's how well I've been doing. > > Anyway, besides the cholangitis I have or have had abscesses in my liver due to an ERCP. I am always on 4 DS sulfa per day. When this flare up started Amoxicillin was added to the mix and I improved steadily until the ninth day and then had chills and fevers again. We switched to Augmentin and very slow but steady improvement was seen until yesterday when the fevers went higher than the Tues. high. At their worst, when the undiscovered abscesses were festering, I could go from a normal temp. to 105F within 45 mins. The highest my temp. has been is 102F. with this latest episode. So, it's not the end of the world, but I am concerned that I may lose ground again. > > I know that many of you take cipro, but it wreaks havoc on my central nervous system and I am ver allergic to many antibiotics. It seems that the only option is to be hospitalized and put on one of two IV antibiotics my infectious disease doc has suggested. Does this seem logical to you? Is there something else I can try? For those of you who have attacks of cholangitis, does this seem to be following a pattern? > > The strange thing about this is that I have a small window of opportunity in the morning to get some work done, fever free, and then the fever hits between 11:30 and 1:00. Is that normal? You would think that I would have it all of the time........ > > I would appreciate any thought on this. > > Also, if there have been newcomers to the group, I apologize for not greeting you! > > Truly feeling like something my cat dragged in, > Penny > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 1999 Report Share Posted March 25, 1999 Dear Penny, I am so sorry to hear that you have been so sick!! Bless your heart! I will be praying for you. To answer some of your questions from my own personal experience. It's strange too, but it seems like most of the time my fevers will hold off until I get through doing things that I HAVE to do during the day. When things get less hectic, it seems that my cholangitis flares up then. My temps also jump like that dramatically very fast. I've heard from my nurses on the GI floor at the hospital I go to that PSC people, once they reach that stage of constant infections not responding to oral antibiotics, most of the time require IVs for 3-4 days. They keep telling me just to get used to it and expect it, but I refuse to. I still hold out hope everyday that I won't have a repeat of the time before. I, also am resistant to Cipro and my docs have had some luck with me on Trovan...it's a fairly new and VERY expensive antibiotic...but it does work sometimes. Anyway, there's my $.02...as Dan says!! Take care and God Bless!! Love, Jacquelyn ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 1999 Report Share Posted March 25, 1999 Penny, When Phil had his flare up - - infection the doctors wanted him in the hospital (he only had a 101 temp) they indicated that the iv Cipro was much more effective than the oral. I can't believe that they haven't hospitalized you with fevers over 102 especially 105. Phil was also able to get a port installed ( that doesn't seem like the right terminology)in his arm and do the iv himself at home over Christmas for 3 days. When he had the relapse they put him back into the hospital again until they got the fever down. Hope they can get a handle on it soon for you. Peg A PR Weller wrote: > Hi, > First let me say that this will be a long post, but I really would > appreciate your help (and please ignore the typos). > > Since Mar. 5th I have apparently been having a flare up of > cholangitis--actually the first documented one I've had. In April of > 1997 I was a month or two away from a tx, last Sept. the tx nurse saw > me and said...see you in a year. That's how well I've been doing. > > Anyway, besides the cholangitis I have or have had abscesses in my > liver due to an ERCP. I am always on 4 DS sulfa per day. When this > flare up started Amoxicillin was added to the mix and I improved > steadily until the ninth day and then had chills and fevers again. We > switched to Augmentin and very slow but steady improvement was seen > until yesterday when the fevers went higher than the Tues. high. At > their worst, when the undiscovered abscesses were festering, I could > go from a normal temp. to 105F within 45 mins. The highest my temp. > has been is 102F. with this latest episode. So, it's not the end of > the world, but I am concerned that I may lose ground again. > > I know that many of you take cipro, but it wreaks havoc on my central > nervous system and I am ver allergic to many antibiotics. It seems > that the only option is to be hospitalized and put on one of two IV > antibiotics my infectious disease doc has suggested. Does this seem > logical to you? Is there something else I can try? For those of you > who have attacks of cholangitis, does this seem to be following a > pattern? > > The strange thing about this is that I have a small window of > opportunity in the morning to get some work done, fever free, and then > the fvere hits between 11:30 and 1:00. Is that normal? You would > think that I would have it all of the time........ > > I would apprecuate any tyhought on this. > > Also, if there have been newcomers to the group, I apologize for not > greeting you! > > Truly feeling like something my cat dragged in, > Penny > ----------------------------------------------------------------------- > Track your stocks and funds in a StockMaster portfolio. With easy > setup, you get quotes, charts, and news for them all on just one page. > No limits, fast loading, and FREE! http://www.stockmaster.com/?a=f8 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 1999 Report Share Posted March 25, 1999 Penny, before my transplant in 1995, I would have boughts of cholangitis, then my doc would put me on 10 days of antibiotics, the infection would diminish, then after the ten days were up, the infection would come back again. This went on for quite a period of time. They tried all kinds of antibiotics to see if that would help. The infections continued while I was listed for 11 months before receiving the new liver. Anyway hang in there, it looks to me like you are going through the progressive steps of the disease. Tom LT in 1995 due to PSC need some helpHi, First let me say that this will be a long post, but I really would appreciate your help (and please ignore the typos). Since Mar. 5th I have apparently been having a flare up of cholangitis--actually the first documented one I've had. In April of 1997 I was a month or two away from a tx, last Sept. the tx nurse saw me and said...see you in a year. That's how well I've been doing. Anyway, besides the cholangitis I have or have had abscesses in my liver due to an ERCP. I am always on 4 DS sulfa per day. When this flare up started Amoxicillin was added to the mix and I improved steadily until the ninth day and then had chills and fevers again. We switched to Augmentin and very slow but steady improvement was seen until yesterday when the fevers went higher than the Tues. high. At their worst, when the undiscovered abscesses were festering, I could go from a normal temp. to 105F within 45 mins. The highest my temp. has been is 102F. with this latest episode. So, it's not the end of the world, but I am concerned that I may lose ground again. I know that many of you take cipro, but it wreaks havoc on my central nervous system and I am ver allergic to many antibiotics. It seems that the only option is to be hospitalized and put on one of two IV antibiotics my infectious disease doc has suggested. Does this seem logical to you? Is there something else I can try? For those of you who have attacks of cholangitis, does this seem to be following a pattern? The strange thing about this is that I have a small window of opportunity in the morning to get some work done, fever free, and then the fvere hits between 11:30 and 1:00. Is that normal? You would think that I would have it all of the time........ I would apprecuate any tyhought on this. Also, if there have been newcomers to the group, I apologize for not greeting you! Truly feeling like something my cat dragged in, Penny Track your stocks and funds in a StockMaster portfolio. With easy setup, you get quotes, charts, and news for them all on just one page. No limits, fast loading, and FREE! http://www.stockmaster.com/?a=f8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 1999 Report Share Posted March 25, 1999 ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 1999 Report Share Posted March 25, 1999 ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 1999 Report Share Posted March 25, 1999 hi i am marsha adams and i new to the group. i spoke to norm and tiffany. i found out that i had psc in nov, i have had ulcerative colitis since i was tweleve had colon cancer two years ago. i am 46 and live in calif. going to the liver spec. tommoroow and seeing norm on sat it sound great. email me if you wou like ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 1999 Report Share Posted March 25, 1999 ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 1999 Report Share Posted March 25, 1999 ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 1999 Report Share Posted March 25, 1999 Penny, From my limited experience oral antibiotics can only do so much and if they aren't working for you then the next logical step, as unpleasant as it may be, is another stay in hospital. I sincerely wish i had more to offer but i can only suggest what i would elect to do myself. Thinking of you, Serge ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 1999 Report Share Posted March 25, 1999 Tom, I don't know if you told your story. I don't remember seeing it. This is the first time I've noticed anyone that has had a transplant. Please tell us what it is like and what your quality of life has been like since. Do you have problems with the anti-rejection drugs? Is Is it as expensive and I've heard? Peg A PS>Penny, before my transplant in 1995, I would have boughts of cholangitis, th PS>Tom LT in 1995 due to PSC PS> need some help PS> PS> PS> Hi, PS> First let me say that this will be a long post, but I really would appre PS> Since Mar. 5th I have apparently been having a flare up of cholangitis-- PS> PS> Anyway, besides the cholangitis I have or have had abscesses in my liver PS> PS> I know that many of you take cipro, but it wreaks havoc on my central ne PS> PS> The strange thing about this is that I have a small window of opportunit PS> PS> I would apprecuate any tyhought on this. PS> PS> Also, if there have been newcomers to the group, I apologize for not gre PS> PS> Truly feeling like something my cat dragged in, PS> Penny PS> PS> PS> ------------------------------------------------------------------------ PS> PS> Track your stocks and funds in a StockMaster portfolio. With easy setup, PS> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 1999 Report Share Posted March 25, 1999 Hi Marsha, Wellcome. You said you are from California. What part. Phil & I are from Santa Clarita, just north of the San Valley, just north of LA. Peg A PS>hi i am marsha adams and i new to the group. i spoke to norm and tiffany. i PS>found out that i had psc in nov, i have had ulcerative colitis since i was PS>tweleve had colon cancer two years ago. i am 46 and live in calif. going t PS>the liver spec. tommoroow and seeing norm on sat it sound great. email me if PS>you wou like PS>------------------------------------------------------------------------ PS>eGroups Spotlight: PS> " Aok-china " - Adopting older kids from China. PS>http://offers./click/243/4 PS> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 1999 Report Share Posted March 25, 1999 Penny, Your post wasn't that long! I've had cholangitis episodes several times a year for the past couple of years and CIPRO orally usually takes care of it and I don't need to be hospitalized. However, this past January I had an episode that was worse than previous ones (it started two weeks after a stent replacement via ERCP). This one put me in the hospital for a week because the CIPRO didn't work - it was a bacteria that was insensitive to CIPRO so they experimented with different ones till they got one that worked (Ampicillan) - by this time the bacterial infection had gotten into the bloodstream. After almost a week in the hospital they sent me home still on IV antibiotics with a small pump that I carried around for another 10 days before I finally got off the antibiotic. Been fine since then except that this episode on top of the others in the past year caused local gastroenterologist to refer to transplant center for evaluation and have since been listed. Don't know if this helps or not, but hope you are feeling better soon. Bill -----Original Message-----From: PR Weller Sent: Thursday, March 25, 1999 10:37 AMTo: egroupsSubject: need some helpHi, First let me say that this will be a long post, but I really would appreciate your help (and please ignore the typos). Since Mar. 5th I have apparently been having a flare up of cholangitis--actually the first documented one I've had. In April of 1997 I was a month or two away from a tx, last Sept. the tx nurse saw me and said...see you in a year. That's how well I've been doing. Anyway, besides the cholangitis I have or have had abscesses in my liver due to an ERCP. I am always on 4 DS sulfa per day. When this flare up started Amoxicillin was added to the mix and I improved steadily until the ninth day and then had chills and fevers again. We switched to Augmentin and very slow but steady improvement was seen until yesterday when the fevers went higher than the Tues. high. At their worst, when the undiscovered abscesses were festering, I could go from a normal temp. to 105F within 45 mins. The highest my temp. has been is 102F. with this latest episode. So, it's not the end of the world, but I am concerned that I may lose ground again. I know that many of you take cipro, but it wreaks havoc on my central nervous system and I am ver allergic to many antibiotics. It seems that the only option is to be hospitalized and put on one of two IV antibiotics my infectious disease doc has suggested. Does this seem logical to you? Is there something else I can try? For those of you who have attacks of cholangitis, does this seem to be following a pattern? The strange thing about this is that I have a small window of opportunity in the morning to get some work done, fever free, and then the fvere hits between 11:30 and 1:00. Is that normal? You would think that I would have it all of the time........ I would apprecuate any tyhought on this. Also, if there have been newcomers to the group, I apologize for not greeting you! Truly feeling like something my cat dragged in, Penny Track your stocks and funds in a StockMaster portfolio. With easy setup, you get quotes, charts, and news for them all on just one page. No limits, fast loading, and FREE! http://www.stockmaster.com/?a=f8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 1999 Report Share Posted March 25, 1999 ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 1999 Report Share Posted March 26, 1999 Penny, I wish you well in your struggle with cholangitis. I, too, have such adverse reactions to oral antibiotics that Augmentin is the only one I can tolerate by mouth. So, when I get a fever (above 101), I have to go into the hospital for IV antibiotics for a couple of days. I haven't had many recently, and I haven't been hospitalized since October 98, but when I do have them, it seems IVantibiotics are the only medicine that works. I still occasionally get chills, and they always seem to come in the mid to late afternoon. Good luck with this current bout. I'd certainly not fool around with it, but get to your doc soon. Take care. I'll be sending you warm wishes. PR Weller wrote: Hi, First let me say that this will be a long post, but I really would appreciate your help (and please ignore the typos). Since Mar. 5th I have apparently been having a flare up of cholangitis--actually the first documented one I've had. In April of 1997 I was a month or two away from a tx, last Sept. the tx nurse saw me and said...see you in a year. That's how well I've been doing. Anyway, besides the cholangitis I have or have had abscesses in my liver due to an ERCP. I am always on 4 DS sulfa per day. When this flare up started Amoxicillin was added to the mix and I improved steadily until the ninth day and then had chills and fevers again. We switched to Augmentin and very slow but steady improvement was seen until yesterday when the fevers went higher than the Tues. high. At their worst, when the undiscovered abscesses were festering, I could go from a normal temp. to 105F within 45 mins. The highest my temp. has been is 102F. with this latest episode. So, it's not the end of the world, but I am concerned that I may lose ground again. I know that many of you take cipro, but it wreaks havoc on my central nervous system and I am ver allergic to many antibiotics. It seems that the only option is to be hospitalized and put on one of two IV antibiotics my infectious disease doc has suggested. Does this seem logical to you? Is there something else I can try? For those of you who have attacks of cholangitis, does this seem to be following a pattern? The strange thing about this is that I have a small window of opportunity in the morning to get some work done, fever free, and then the fvere hits between 11:30 and 1:00. Is that normal? You would think that I would have it all of the time........ I would apprecuate any tyhought on this. Also, if there have been newcomers to the group, I apologize for not greeting you! Truly feeling like something my cat dragged in, Penny Track your stocks and funds in a StockMaster portfolio. With easy setup, you get quotes, charts, and news for them all on just one page. No limits, fast loading, and FREE! http://www.stockmaster.com/?a=f8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 1999 Report Share Posted March 26, 1999 Hi Marsha, Welcome to the group. I've only been involved for a while, but already have lots of new info I didn't have before. I think you're going to like this... DP101a@... wrote: > hi i am marsha adams and i new to the group. i spoke to norm and tiffany. i > found out that i had psc in nov, i have had ulcerative colitis since i was > tweleve had colon cancer two years ago. i am 46 and live in calif. going to > the liver spec. tommoroow and seeing norm on sat it sound great. email me if > you wou like > > ------------------------------------------------------------------------ > eGroups Spotlight: > " Aok-china " - Adopting older kids from China. > http://offers./click/243/4 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 1999 Report Share Posted March 26, 1999 Penny - I use cipro to control my infections. I've had Cipro IVs once for 4 days, and take it orally at all times. I'm going to make an attempt to stop when I get back to San Diego in a few weeks so if something goes wrong my doctors are available. My infections do not respond to Trovan. I reviewed some old messages and there was a suggestion to try Unasyn. This is also an IV antibiotic. The recommendation came twice from people with resistant infections and in both cases knocked the cholangitis out. I'm going to suggest it to my doctor if my next attempt to get of Cipro fails. Russ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 1999 Report Share Posted March 26, 1999 DP101a@... wrote: > I keep getting blank messages in this area.....Penny > > ------------------------------------------------------------------------ > Too much effort to find the stock info you want each day? StockMaster > lets you enter a company name and quickly shows you a daily quote, > chart, and news all on one page. Free! http://stockmaster.com/?a=f7 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 1999 Report Share Posted March 26, 1999 So do I!! Peggy McG ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 1999 Report Share Posted March 27, 1999 ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 1999 Report Share Posted April 3, 1999 ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 1999 Report Share Posted April 3, 1999 TRY FLOXIN I HAVE HAD GOOD RESULTS SINCE NOV. NO INFECTIONS OR FEVERS!! MARSHA ADAMS ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
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