Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 I have recently been going through one of my worse itching periods ever and so wrote a letter to my hep saying i was going mad and my body looked like i'd been attacked by a cat!! I asked if i could start 'rifampicin' which he prescribed a year or so ago but i was not willing to take it. Now however I need some relief. Anyways after several weeks of not hearing a thing from him. his sec sent me an email saying shes got a draft copy of the letter he's going to send back. In it he says he would not encourage using the drug. What a complete turn around. And he suggests speaking to my gp about 'Anti nodular medication' what the hell is this? I am so angry that he has basically done nothing to help and what seems like palming me off on my gp. Can any1 give me some idea of what to do? I am NOT a happy bunny. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 I would say to keep on him about it, and demand a reason WHY he isn't going to recommend it, now, when he was previously. For one thing, it helped my son TREMENDOUSLY. For another, you don't want to stand by and allow him ignore you. And it's your body. You deserve explanations. I'd be steamed, too. Ami Ami - Migraines, FMS mom to - 10 yrs - Double Lung Tx 2/26/2006, PSC - Tx 7/16/2007, Diabetes, Hypothyroid, GERD, ADHD, Osteopenia http://caringbridge.org/visit/seanfox mom to Emma - 14 yrs - Migraines stepmom to - 15 yrs - ADHD, ODD ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~ Subject: Seriously steamed up....To: Date: Wednesday, December 10, 2008, 10:35 AM I have recently been going through one of my worse itching periods ever and so wrote a letter to my hep saying i was going mad and my body looked like i'd been attacked by a cat!! I asked if i could start 'rifampicin' which he prescribed a year or so ago but i was not willing to take it. Now however I need some relief. Anyways after several weeks of not hearing a thing from him. his sec sent me an email saying shes got a draft copy of the letter he's going to send back. In it he says he would not encourage using the drug. What a complete turn around. And he suggests speaking to my gp about 'Anti nodular medication' what the hell is this? I am so angry that he has basically done nothing to help and what seems like palming me off on my gp. Can any1 give me some idea of what to do? I am NOT a happy bunny. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 I would say to keep on him about it, and demand a reason WHY he isn't going to recommend it, now, when he was previously. For one thing, it helped my son TREMENDOUSLY. For another, you don't want to stand by and allow him ignore you. And it's your body. You deserve explanations. I'd be steamed, too. Ami Ami - Migraines, FMS mom to - 10 yrs - Double Lung Tx 2/26/2006, PSC - Tx 7/16/2007, Diabetes, Hypothyroid, GERD, ADHD, Osteopenia http://caringbridge.org/visit/seanfox mom to Emma - 14 yrs - Migraines stepmom to - 15 yrs - ADHD, ODD ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~ Subject: Seriously steamed up....To: Date: Wednesday, December 10, 2008, 10:35 AM I have recently been going through one of my worse itching periods ever and so wrote a letter to my hep saying i was going mad and my body looked like i'd been attacked by a cat!! I asked if i could start 'rifampicin' which he prescribed a year or so ago but i was not willing to take it. Now however I need some relief. Anyways after several weeks of not hearing a thing from him. his sec sent me an email saying shes got a draft copy of the letter he's going to send back. In it he says he would not encourage using the drug. What a complete turn around. And he suggests speaking to my gp about 'Anti nodular medication' what the hell is this? I am so angry that he has basically done nothing to help and what seems like palming me off on my gp. Can any1 give me some idea of what to do? I am NOT a happy bunny. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Always remember, your doctors work for YOU....without patients, they have no practice. I've been very fortunate because whenever I mention a med that someone mentions here for itching, I merely call my transplant coordinator, ask her to ask the doc, and he checks to make sure it is something new for itching and if so, prescribes it for me to try. I've tried just about everything there is, just short of being put in a coma. I remember having problems with his receptionist never calling me back when I left message to get an appointment, so I sent a seething email to him and the hospital...and I got a personal call from him saying he was going to change the way things were done because he valued his patients. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Always remember, your doctors work for YOU....without patients, they have no practice. I've been very fortunate because whenever I mention a med that someone mentions here for itching, I merely call my transplant coordinator, ask her to ask the doc, and he checks to make sure it is something new for itching and if so, prescribes it for me to try. I've tried just about everything there is, just short of being put in a coma. I remember having problems with his receptionist never calling me back when I left message to get an appointment, so I sent a seething email to him and the hospital...and I got a personal call from him saying he was going to change the way things were done because he valued his patients. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2008 Report Share Posted December 11, 2008 I would ask again and if they won't let you then write a letter of complaint its your body and if you want to try rifampicin then you should be allowed to do so.Point out to them that your the one that suffers from itching everyday and would they want to try it if they were going through the same as you everyday. I am so gald that my specialist doctor Chapman is caring and will let me try things. I have been on rifampicin for ages now and it helps me alot with my itching so keep on at them. good luck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2008 Report Share Posted December 11, 2008 I would ask again and if they won't let you then write a letter of complaint its your body and if you want to try rifampicin then you should be allowed to do so.Point out to them that your the one that suffers from itching everyday and would they want to try it if they were going through the same as you everyday. I am so gald that my specialist doctor Chapman is caring and will let me try things. I have been on rifampicin for ages now and it helps me alot with my itching so keep on at them. good luck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2008 Report Share Posted December 11, 2008 I would ask again and if they won't let you then write a letter of complaint its your body and if you want to try rifampicin then you should be allowed to do so.Point out to them that your the one that suffers from itching everyday and would they want to try it if they were going through the same as you everyday. I am so gald that my specialist doctor Chapman is caring and will let me try things. I have been on rifampicin for ages now and it helps me alot with my itching so keep on at them. good luck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2008 Report Share Posted December 11, 2008 I was thinking about what you write. I am not sure why you have to write to you doc and it should have to take weeks?I am just wondering. ShaulPSC UCSent via BlackBerry by AT&TFrom: "kelly-joy" Date: Thu, 11 Dec 2008 14:12:14 -0000To: < >Subject: Re: Seriously steamed up.... I would ask again and if they won't let you then write a letter of complaint its your body and if you want to try rifampicin then you should be allowed to do so.Point out to them that your the one that suffers from itching everyday and would they want to try it if they were going through the same as you everyday. I am so gald that my specialist doctor Chapman is caring and will let me try things. I have been on rifampicin for ages now and it helps me alot with my itching so keep on at them. good luck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Hi Cindy, In your extensive experience what have you found to be the best at helping with this most maddening of symptoms? Really am going crazy. Sent steamy email to hep's sec and nothing back! Whats now worse is i've suddenly come dwn with really bad cough, sore throat and ear ache. Fingers crossed this is all now so i can have a healthier christmas day! Merry Christmas (uk, psc & uc 2002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Hi Cindy, In your extensive experience what have you found to be the best at helping with this most maddening of symptoms? Really am going crazy. Sent steamy email to hep's sec and nothing back! Whats now worse is i've suddenly come dwn with really bad cough, sore throat and ear ache. Fingers crossed this is all now so i can have a healthier christmas day! Merry Christmas (uk, psc & uc 2002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Ami It sound like you have an upper respiratory infection and need to see your primary care doc or an internist. Liver docs don't generally treat the common infections, at least mine don't. I have even been to walk in clinics for those types of things when my PCP couldn't get me in right away. A good office staff should have called and told you you check with a GP. Specialists don't usually know what is going around in a community like a general practitioner. We all need a primary care doc for the day to day problems. Hope you feel better soon. MizKit Re: Seriously steamed up.... Ami, Sent that email over to the hep sec and nothing back. Now come dwn with bad cough, sore throat and ear ache. All this is leaving me with a burning question should i change hep's?? All in all i've only seen him twice all other times its been one of his staff, which i'm not exactly happy with. But could changing hep actually end me up with a worse one? Sounds very uncaring and heartless i know but as so many of you have said it is my body, my life and i must do what i must to get the best and thoughtful care possible (esp as it makes my families lifes easier too!!) Merry Christmas (uk, psc & uc 2002) Listen to 350+ music, sports, news radio stations including songs for the holidays FREE while you browse. Start Listening Now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Ami It sound like you have an upper respiratory infection and need to see your primary care doc or an internist. Liver docs don't generally treat the common infections, at least mine don't. I have even been to walk in clinics for those types of things when my PCP couldn't get me in right away. A good office staff should have called and told you you check with a GP. Specialists don't usually know what is going around in a community like a general practitioner. We all need a primary care doc for the day to day problems. Hope you feel better soon. MizKit Re: Seriously steamed up.... Ami, Sent that email over to the hep sec and nothing back. Now come dwn with bad cough, sore throat and ear ache. All this is leaving me with a burning question should i change hep's?? All in all i've only seen him twice all other times its been one of his staff, which i'm not exactly happy with. But could changing hep actually end me up with a worse one? Sounds very uncaring and heartless i know but as so many of you have said it is my body, my life and i must do what i must to get the best and thoughtful care possible (esp as it makes my families lifes easier too!!) Merry Christmas (uk, psc & uc 2002) Listen to 350+ music, sports, news radio stations including songs for the holidays FREE while you browse. Start Listening Now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Ami, I have to agree with MizKit. I had UC from 1996 until 2003 when my colon was removed. My specialist was just that - a Gastro. Then in 2003 when I was dianosed with PSC, i see my Liver Doc for only Liver Related ills. I see my GP for everything else. Yearly checkups, Flu, Colds, etc. I know it is a hassle but hang in there. Jeff > > Ami > > It sound like you have an upper respiratory infection and need to see your primary care doc or an internist.? Liver docs don't generally treat the common infections, at least mine don't.? I have even been to walk in clinics for those types of things when my PCP couldn't get me in right away.?? A good office staff should have called and told you you check with a GP.? Specialists don't usually know what is going around in a community like a general practitioner.? We all need a primary care doc for the day to day problems.?? > Hope you feel better soon. > MizKit?? > > > Re: Seriously steamed up.... > > > > > > > Ami, > > Sent that email over to the hep sec and nothing back. Now come dwn with > bad cough, sore throat and ear ache. All this is leaving me with a > burning question should i change hep's?? All in all i've only seen him > twice all other times its been one of his staff, which i'm not exactly > happy with. But could changing hep actually end me up with a worse one? > Sounds very uncaring and heartless i know but as so many of you have > said it is my body, my life and i must do what i must to get the best > and thoughtful care possible (esp as it makes my families lifes easier > too!!) > > Merry Christmas > (uk, psc & uc 2002) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Ami, I have to agree with MizKit. I had UC from 1996 until 2003 when my colon was removed. My specialist was just that - a Gastro. Then in 2003 when I was dianosed with PSC, i see my Liver Doc for only Liver Related ills. I see my GP for everything else. Yearly checkups, Flu, Colds, etc. I know it is a hassle but hang in there. Jeff > > Ami > > It sound like you have an upper respiratory infection and need to see your primary care doc or an internist.? Liver docs don't generally treat the common infections, at least mine don't.? I have even been to walk in clinics for those types of things when my PCP couldn't get me in right away.?? A good office staff should have called and told you you check with a GP.? Specialists don't usually know what is going around in a community like a general practitioner.? We all need a primary care doc for the day to day problems.?? > Hope you feel better soon. > MizKit?? > > > Re: Seriously steamed up.... > > > > > > > Ami, > > Sent that email over to the hep sec and nothing back. Now come dwn with > bad cough, sore throat and ear ache. All this is leaving me with a > burning question should i change hep's?? All in all i've only seen him > twice all other times its been one of his staff, which i'm not exactly > happy with. But could changing hep actually end me up with a worse one? > Sounds very uncaring and heartless i know but as so many of you have > said it is my body, my life and i must do what i must to get the best > and thoughtful care possible (esp as it makes my families lifes easier > too!!) > > Merry Christmas > (uk, psc & uc 2002) > Quote Link to comment Share on other sites More sharing options...
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