Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 -Joy, Go to the ER! At the very least, call your doctor. I'd be willing to bet you're having a cholangitis attack - psc normal, yes...but not good! Please do not hesitate. (MO) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 It's when you have an infection in your bile ducts due to the psc. It can be very serious if it is left untreated. I don't mean to scare, I just want you to be as informed as you can. If it is an attack you will need antibiotics and if it's bad it may require IV antibiotics. Please do not hesitate. I have had PSC for 22+ years, I know the symptoms and all way to well. I'm with Martha, you are not a BAD mother you are an ill mother -- there is a HUGE difference. You keep loving them and they'll get through this. Hugs, (MO) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Good luck, I'll be thinking about you! (MO) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 -Joy, This warrants a call to the doctor, it may be a cholangitis attack and you may need medical intervention to keep from getting even sicker. You are NOT a bad mother! You do the best you can, and then ask for help when you can't. Sometimes we have to be on the recieving end of help, we can't always give. Good luck, Martha (MA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Thanks I really needed to hear that. What is a cholangitis attack? I am new to all this as I was only told in feb that I have psc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Ok i will call docs but they already know I keep telling them and they say they can't do anthing and that i will have to wait to see specialist which i go to see on 28 april. WHAT IS A CHOLANGITIS ATTACK THOUGH? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 I am on rotating oral antibiotics to prevent these attacks. A-B-C (augmentin, bactrim DS, and cipro). They help me quite a bit. I switch every two weeks. > Oh I was in hospital on iv antibotics the other week do you think its > just the same thing carrying on as I have just finished antibotic > tablets a couple of days ago. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Oh I was in hospital on iv antibotics the other week do you think its just the same thing carrying on as I have just finished antibotic tablets a couple of days ago. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Ok thanks I have to go now as doc is going to phone me back I will speak to you all later. kelly-joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 -Joy, I hate that the doc told you that you must have a temp first, because I for one, have been sepsis without running a temp! Not to mention, my normal body temp is 97.2 so when I hit 98.6 I'm already working on a low grade. Seriously, I have had many, many, many cholangitis attacks (1 every 3-4 wks last year) and didn't run a temp with 99% of them. Did you have a temp when you were in last week? I guess what I'm saying is he really needs to go by what's "normal" for you, not everyone else. If they went by everyone else's "norm" with me I wouldn't be alive. I hope your doctor, and certainly the specialist your about to see learns real quick to treat you as an individual with a unique disease. My docs caught on relatively early in my treatment that I SELDOM present with typical symptoms - true with PSC and every other condition I have (which is a pretty extensive list). How are you feeling? Do you feel any better than yesterday? I sure hope so. If not, keep calling that doc or go to the ER until someone listens. I've had to do that more than once. As embarrassed as I was at the time, I was always right in the end -- there was always something wrong (and typically it was something serious). I wish we could give you a jam packed PSC beginners class to get you through this, but since that's not feasible, feel free to post ANY questions you have. The people here are amazing and readily available with information and support! Take care! (MO) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Hi all I spoke to docs and they say I have to wait to and get a temperature before they will do anything so I will let you know if I get one. Is there something I can take to prevent me from getting these attacks then?. I am not on any meds for this psc should I be? thanks kelly-joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 No thanks necessary. Just take care of yourself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 ---Hi Mel I didn't have a temperature for a few days and then I did so they then decided to send me to hospital. I still don't feel that great but i am coping. I have to for my kids sakes.When I go to the specialist on the 28th of april I hope that I will learn more and that they will be able to help me but for now I will just have to put up with it . I will keep you posted thanks for all your help. kelly-joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 -Joy Have you tried calling the specialists office, and explaining the situation to try to get the appointment moved up? MartiMO425@... wrote: -Joy, I hate that the doc told you that you must have a temp first, because I for one, have been sepsis without running a temp! Not to mention, my normal body temp is 97.2 so when I hit 98.6 I'm already working on a low grade. Seriously, I have had many, many, many cholangitis attacks (1 every 3-4 wks last year) and didn't run a temp with 99% of them. Did you have a temp when you were in last week? I guess what I'm saying is he really needs to go by what's "normal" for you, not everyone else. If they went by everyone else's "norm" with me I wouldn't be alive. I hope your doctor, and certainly the specialist your about to see learns real quick to treat you as an individual with a unique disease. My docs caught on relatively early in my treatment that I SELDOM present with typical symptoms - true with PSC and every other condition I have (which is a pretty extensive list). How are you feeling? Do you feel any better than yesterday? I sure hope so. If not, keep calling that doc or go to the ER until someone listens. I've had to do that more than once. As embarrassed as I was at the time, I was always right in the end -- there was always something wrong (and typically it was something serious). I wish we could give you a jam packed PSC beginners class to get you through this, but since that's not feasible, feel free to post ANY questions you have. The people here are amazing and readily available with information and support! Take care! (MO) New Yahoo! Messenger with Voice. Call regular phones from your PC for low, low rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 No I haven't done that. I have managed to get an appointment with my own doctor today at 3.20 which is like gold dust so I know he will help me. I will let you know what he says later. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 -Joy: I may have missed part of your symptoms, but if pain is significant, either chest pain, epigastric/upper abdominal pain, heartburn, etc., my son has found incredible relief with Prilosec or one of the prescription " H2 Blockers " like Aciphex or Prevacid. From other emails, it sounds like many PSC'ers have symptoms similar to reflux/GERD, which may feel better with those meds. Sorry, if pain was not a main component, but if it is, this may be worth talking to your doctor about. Also, your doctor may be able to help advocate an earlier specialist appointment for you - ask and explain how this is affecting you and your family! Take care. Hope today goes well for you. Joanne (, Ca) > > No I haven't done that. I have managed to get an appointment with my > own doctor today at 3.20 which is like gold dust so I know he will > help me. I will let you know what he says later. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 Been to my doctor and he was a great help. He spoke to my specialist and she has put me on urso twice daily and colestyramine 1 before breakfast and one after breakfast. I will let you all know how I get on with these meds. thanks for all your help kelly-joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 -Joy, As pointed out in message 83449, Questran (generic name colestyramine) and Actigall (urso) should not be taken within 3 hours of each other (some may say 2 hours). Otherwise the colestyramine will bind to the urso reducing the effectiveness of both drugs. Tim R > ... she has put me on urso twice daily and colestyramine 1 before > breakfast and one after breakfast. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 So Tim do you think I should take urso then wait 2 hours and then take first colestyramine and maybe take 2nd after ive eaten lunch say? as I supposed to take 2nd after ive eaten breakfast. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 -Joy, You need a plan that works with your schedule, meets with your doctors approval and doesn't have interactions between colestyramine and Urso. Since your doctor wants you to take the colestyramine before and after breakfast (probably because that would be when a significant amount of bile is released from your gall bladder) I would make that my primary focus for scheduling meds, I would then take the Urso 3 hours later for the 1st dose and about 12 hours after that for the 2nd. The schedule might be: colestyramine at 7 and 8 am urso at 11 am and 11 pm or bedtime Since my gall bladder was removed many years before I took colestyramine, I scheduled it 4 hours after my regular meds (including ursodiol), which I took at 7 am and 7 pm. Preparing and takeing the colestyramine was part of my lunch and bedtime ritual. Tim R > > So Tim do you think I should take urso then wait 2 hours and then take > first colestyramine and maybe take 2nd after ive eaten lunch say? as I > supposed to take 2nd after ive eaten breakfast. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 Ok Tim thanks for the help. I think I will phone doctors 2morrow and see what they think. Quote Link to comment Share on other sites More sharing options...
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