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 Hi Ami, Thanks for the advice, i've sent another email over to his sec and attached a 'no holding back' response to the docs letter. Fingers crossed he will get the message. Thanks again Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Hi Ami, Thanks for the advice, i've sent another email over to his sec and attached a 'no holding back' response to the docs letter. Fingers crossed he will get the message. Thanks again Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 , No problem. A lot of 's doctors were more than willing to work with us. BUT, I've had more than enough times (getting him on rifampin in the first place) where I had to fight and argue and bitch and raise a ruckus. Even right up to the week he went into hepatorenal failure and they were all arguing about WHY his kidneys were failing, and, therefore, whether or not he should get a liver at that time. You're hiring them to care for your body, health, and life. But it's you that has to live with the result of their work. So don't let them slack off, darlin!! Good luck. Let us know how things come out. 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: Re: Seriously steamed up....To: Date: Wednesday, December 10, 2008, 11:38 AM Hi Ami,Thanks for the advice, i've sent another email over to his sec and attached a 'no holding back' response to the docs letter. Fingers crossed he will get the message. Thanks again Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 , No problem. A lot of 's doctors were more than willing to work with us. BUT, I've had more than enough times (getting him on rifampin in the first place) where I had to fight and argue and bitch and raise a ruckus. Even right up to the week he went into hepatorenal failure and they were all arguing about WHY his kidneys were failing, and, therefore, whether or not he should get a liver at that time. You're hiring them to care for your body, health, and life. But it's you that has to live with the result of their work. So don't let them slack off, darlin!! Good luck. Let us know how things come out. 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: Re: Seriously steamed up....To: Date: Wednesday, December 10, 2008, 11:38 AM Hi Ami,Thanks for the advice, i've sent another email over to his sec and attached a 'no holding back' response to the docs letter. Fingers crossed he will get the message. Thanks again Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Whether he is right or wrong is a question for another time. In order to become a hep he jad to practice medicine first as a GI. So why is he sending you to a GI if he jas that training. Pruritis (itching) should be a common issue for a hep. It makes no sense to me (not that I am the sharpest tool in the shed). ShaulPSC UCSent via BlackBerry by AT&TFrom: "rach8684" Date: Wed, 10 Dec 2008 16:35:57 -0000To: < >Subject: Seriously steamed up.... 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 Whether he is right or wrong is a question for another time. In order to become a hep he jad to practice medicine first as a GI. So why is he sending you to a GI if he jas that training. Pruritis (itching) should be a common issue for a hep. It makes no sense to me (not that I am the sharpest tool in the shed). ShaulPSC UCSent via BlackBerry by AT&TFrom: "rach8684" Date: Wed, 10 Dec 2008 16:35:57 -0000To: < >Subject: Seriously steamed up.... 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 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 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 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 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 I honestly haven't found any 'one' thing that works or continues to work. For the most part, different meds have worked for a while, then they suddenly become ineffective. I've tried phenabartitol, Rifampin, Naltrexone, Zofran(which is an anti-nausea pill for cancer patients on chemo), but for some reason it is also used for itching and helps keep the nausea at bay. I've done Cholestraymine, Hydroxyzine, Allegra, Zoloft (the anti depressant used for itching), I've used Sarna cream, all sorts of creams, sun-tanning. And Ambien CR - not so much to control the itching, but to knock me out at night so I get a good nights sleep dispite the itching. I know there are other meds I have tried, but I can't think of them. heck, I would smear cow poop all over myself if a doctor told me it would stop the itching. I hope you don't get any other symptoms before Christmas, I am sitting at work with my fingers crossed because my boss who sits 7 feet from me went home yesterday morning puking her guts out...and I am sure it is the flu. Oh yeah, I've even tried massage therapy using my logic that if it is bile salts that are depositing under the skin's surface and irritating the nerves...if it is massaged around maybe it would dislodge and move on out. I think there are 2 things important with itching (just my opinion) #1 is to stop bile from backing up...hence all the medications and #2, getting the backed up bile out of my body....hence the tanning. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 I honestly haven't found any 'one' thing that works or continues to work. For the most part, different meds have worked for a while, then they suddenly become ineffective. I've tried phenabartitol, Rifampin, Naltrexone, Zofran(which is an anti-nausea pill for cancer patients on chemo), but for some reason it is also used for itching and helps keep the nausea at bay. I've done Cholestraymine, Hydroxyzine, Allegra, Zoloft (the anti depressant used for itching), I've used Sarna cream, all sorts of creams, sun-tanning. And Ambien CR - not so much to control the itching, but to knock me out at night so I get a good nights sleep dispite the itching. I know there are other meds I have tried, but I can't think of them. heck, I would smear cow poop all over myself if a doctor told me it would stop the itching. I hope you don't get any other symptoms before Christmas, I am sitting at work with my fingers crossed because my boss who sits 7 feet from me went home yesterday morning puking her guts out...and I am sure it is the flu. Oh yeah, I've even tried massage therapy using my logic that if it is bile salts that are depositing under the skin's surface and irritating the nerves...if it is massaged around maybe it would dislodge and move on out. I think there are 2 things important with itching (just my opinion) #1 is to stop bile from backing up...hence all the medications and #2, getting the backed up bile out of my body....hence the tanning. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 I honestly haven't found any 'one' thing that works or continues to work. For the most part, different meds have worked for a while, then they suddenly become ineffective. I've tried phenabartitol, Rifampin, Naltrexone, Zofran(which is an anti-nausea pill for cancer patients on chemo), but for some reason it is also used for itching and helps keep the nausea at bay. I've done Cholestraymine, Hydroxyzine, Allegra, Zoloft (the anti depressant used for itching), I've used Sarna cream, all sorts of creams, sun-tanning. And Ambien CR - not so much to control the itching, but to knock me out at night so I get a good nights sleep dispite the itching. I know there are other meds I have tried, but I can't think of them. heck, I would smear cow poop all over myself if a doctor told me it would stop the itching. I hope you don't get any other symptoms before Christmas, I am sitting at work with my fingers crossed because my boss who sits 7 feet from me went home yesterday morning puking her guts out...and I am sure it is the flu. Oh yeah, I've even tried massage therapy using my logic that if it is bile salts that are depositing under the skin's surface and irritating the nerves...if it is massaged around maybe it would dislodge and move on out. I think there are 2 things important with itching (just my opinion) #1 is to stop bile from backing up...hence all the medications and #2, getting the backed up bile out of my body....hence the tanning. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Thank you Cindy and I too would go to any lengths to stop the itching. How often do you use a sun bed? How long for? Subject: Re: Re: Seriously steamed up....To: Date: Tuesday, December 16, 2008, 9:18 PM I honestly haven't found any 'one' thing that works orcontinues to work. For the most part, different medshave worked for a while, then they suddenly becomeineffective.I've tried phenabartitol, Rifampin, Naltrexone,Zofran(which is an anti-nausea pill for cancerpatients on chemo), but for some reason it is alsoused for itching and helps keep the nausea at bay. I've done Cholestraymine, Hydroxyzine, Allegra, Zoloft(the anti depressant used for itching), I've usedSarna cream, all sorts of creams, sun-tanning. AndAmbien CR - not so much to control the itching, but toknock me out at night so I get a good nights sleepdispite the itching.I know there are other meds I have tried, but I can'tthink of them. heck, I would smear cow poop all overmyself if a doctor told me it would stop the itching.I hope you don't get any other symptoms beforeChristmas, I am sitting at work with my fingerscrossed because my boss who sits 7 feet from me wenthome yesterday morning puking her guts out...and I amsure it is the flu.Oh yeah, I've even tried massage therapy using mylogic that if it is bile salts that are depositingunder the skin's surface and irritating thenerves...if it is massaged around maybe it woulddislodge and move on out.I think there are 2 things important with itching(just my opinion) #1 is to stop bile from backingup...hence all the medications and #2, getting thebacked up bile out of my body....hence the tanning.Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Thank you Cindy and I too would go to any lengths to stop the itching. How often do you use a sun bed? How long for? Subject: Re: Re: Seriously steamed up....To: Date: Tuesday, December 16, 2008, 9:18 PM I honestly haven't found any 'one' thing that works orcontinues to work. For the most part, different medshave worked for a while, then they suddenly becomeineffective.I've tried phenabartitol, Rifampin, Naltrexone,Zofran(which is an anti-nausea pill for cancerpatients on chemo), but for some reason it is alsoused for itching and helps keep the nausea at bay. I've done Cholestraymine, Hydroxyzine, Allegra, Zoloft(the anti depressant used for itching), I've usedSarna cream, all sorts of creams, sun-tanning. AndAmbien CR - not so much to control the itching, but toknock me out at night so I get a good nights sleepdispite the itching.I know there are other meds I have tried, but I can'tthink of them. heck, I would smear cow poop all overmyself if a doctor told me it would stop the itching.I hope you don't get any other symptoms beforeChristmas, I am sitting at work with my fingerscrossed because my boss who sits 7 feet from me wenthome yesterday morning puking her guts out...and I amsure it is the flu.Oh yeah, I've even tried massage therapy using mylogic that if it is bile salts that are depositingunder the skin's surface and irritating thenerves...if it is massaged around maybe it woulddislodge and move on out.I think there are 2 things important with itching(just my opinion) #1 is to stop bile from backingup...hence all the medications and #2, getting thebacked up bile out of my body....hence the tanning.Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Thank you Cindy and I too would go to any lengths to stop the itching. How often do you use a sun bed? How long for? Subject: Re: Re: Seriously steamed up....To: Date: Tuesday, December 16, 2008, 9:18 PM I honestly haven't found any 'one' thing that works orcontinues to work. For the most part, different medshave worked for a while, then they suddenly becomeineffective.I've tried phenabartitol, Rifampin, Naltrexone,Zofran(which is an anti-nausea pill for cancerpatients on chemo), but for some reason it is alsoused for itching and helps keep the nausea at bay. I've done Cholestraymine, Hydroxyzine, Allegra, Zoloft(the anti depressant used for itching), I've usedSarna cream, all sorts of creams, sun-tanning. AndAmbien CR - not so much to control the itching, but toknock me out at night so I get a good nights sleepdispite the itching.I know there are other meds I have tried, but I can'tthink of them. heck, I would smear cow poop all overmyself if a doctor told me it would stop the itching.I hope you don't get any other symptoms beforeChristmas, I am sitting at work with my fingerscrossed because my boss who sits 7 feet from me wenthome yesterday morning puking her guts out...and I amsure it is the flu.Oh yeah, I've even tried massage therapy using mylogic that if it is bile salts that are depositingunder the skin's surface and irritating thenerves...if it is massaged around maybe it woulddislodge and move on out.I think there are 2 things important with itching(just my opinion) #1 is to stop bile from backingup...hence all the medications and #2, getting thebacked up bile out of my body....hence the tanning.Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 I go 2 times a week for 10 minutes. Doctors sometimes prescribe it so it is covered under medical, but dermatologists order UVB only. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 I go 2 times a week for 10 minutes. Doctors sometimes prescribe it so it is covered under medical, but dermatologists order UVB only. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
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