Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 hi lu i don,t think your crazy i would do it for my daughter if needed keep happy luv pam/bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 hi lu i don,t think your crazy i would do it for my daughter if needed keep happy luv pam/bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 In a message dated 11/28/01 3:35:49 PM Pacific Standard Time, angelhearts61@... writes: << and won't let me do it UNLESS DR. TRENTHAM says to. >> Kathi, your dr sounds wonderful... she sounds like a real keeper. I sure wish she would put you on something to protect your stomach. that scares me... I also had great results with the folic acid with the metho as to the side effects. Dr T. is a wonderful dr but we have to have some lee way here..We are all different. I was put on Prevacid because they thought my hoarseness was caused by acid reflux too. NOT. It didn't help my throat but sure helped my stomach. So I have stayed on it...Haven't had any problems with my stomach since.. I sure hope they can come up with something to help you... I know how miserable it can be.. Maybe if you copied some of the posts from members, ......do you think she'd read those.... There are some wonderful old posts from Hobb to newbies in the archives...if you can't find them I will send them to you... Hope you have good news on the 13th.... Sending lots of hugs and support Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 In a message dated 11/28/01 3:35:49 PM Pacific Standard Time, angelhearts61@... writes: << and won't let me do it UNLESS DR. TRENTHAM says to. >> Kathi, your dr sounds wonderful... she sounds like a real keeper. I sure wish she would put you on something to protect your stomach. that scares me... I also had great results with the folic acid with the metho as to the side effects. Dr T. is a wonderful dr but we have to have some lee way here..We are all different. I was put on Prevacid because they thought my hoarseness was caused by acid reflux too. NOT. It didn't help my throat but sure helped my stomach. So I have stayed on it...Haven't had any problems with my stomach since.. I sure hope they can come up with something to help you... I know how miserable it can be.. Maybe if you copied some of the posts from members, ......do you think she'd read those.... There are some wonderful old posts from Hobb to newbies in the archives...if you can't find them I will send them to you... Hope you have good news on the 13th.... Sending lots of hugs and support Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Lu, The zofran is of little help to me with the nausea. SOMETIMES, but not very often, I have some nausea associated with the methotrexate and the zofran does help for that. That is a totally different type of nausea though. I can't describe the difference, I just know it when I feel it. No, I have never been on Imuran. The Dr. I see here is a Rhuematologist who has NO experience with RP. She is a wonderful Dr./person and is one of the most compassionate human beings (especially for a Dr.--and I can say that because I am a nurse) that I have ever met. She just won't do anything not recommended by Dr. Trentham and that is where my problem is. He doesn't prescribe Folic Acid or any medications for protection of your stomache so she won't write me a prescription for them. I was on Prilosec for about 3 years because they thought I was loosing my voice because of Reflux disease but it didn't help at all-- my voice or the nausea. When I called my Dr. on Monday morning about the 12 days of N/V she did ask me if I was having a heart burn sensation-- which I am not-- and that if I was she thought I should be on reglan. She ended up giving me compazine because I needed something that was going to work a lot faster than reglan but when I go back to the Dr. on Dec. 13th, I am going to ask her about the reglan. She is such a sweetie but has no clue about RP. She doesn't realize that I have to increase my Prednisone at the first sign of a flare-- and won't let me do it UNLESS DR. TRENTHAM says to. My other big barrier is the fact that I have little to no voice to be able to be able to really communicate with her. I am not sure what the answer is, I just know that Iam about over the edge with all of this. The only thing the Dr.s want to discuss with me is quitting work and going on disability. I am having trouble accepting that at this point. I don't feel like we have done enough to try and get control of this disease. Maybe I am wrong about working, but..... Kathi >From: Lu1953@... >Reply-To: Rpolychondritis >To: Rpolychondritis >Subject: Re: Lu/Kathi >Date: Wed, 28 Nov 2001 17:06:14 EST > >Hi Kathi, >Wow, I can't believe that was your first symptom. What a horrible one to >have, there is nothing worse than nausea..or ear pain. or heck all of it. >Have you ever been on Imuran? That is what they switched me to, although > in our group couldn't take it, It made her sick. It helps, I have >less flares but I still do flare just not as much. Maybe a different drug >would help some. Did the zofran not help either? I lived on that stuff >while >on metho, and It helped some. What kind of doctor are you using is he a >rheumatologist? >love you, >Lu > > > > medicines haven't changed it a bit. I do wonder if I should change to > > something besides the methotrexate, not because of the nausea, but >becasue > > I > > just don't seem to be improving. I just don't know what to try next. >Any > > input would be greatful!! > > Kathi > > > > > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Lu, The zofran is of little help to me with the nausea. SOMETIMES, but not very often, I have some nausea associated with the methotrexate and the zofran does help for that. That is a totally different type of nausea though. I can't describe the difference, I just know it when I feel it. No, I have never been on Imuran. The Dr. I see here is a Rhuematologist who has NO experience with RP. She is a wonderful Dr./person and is one of the most compassionate human beings (especially for a Dr.--and I can say that because I am a nurse) that I have ever met. She just won't do anything not recommended by Dr. Trentham and that is where my problem is. He doesn't prescribe Folic Acid or any medications for protection of your stomache so she won't write me a prescription for them. I was on Prilosec for about 3 years because they thought I was loosing my voice because of Reflux disease but it didn't help at all-- my voice or the nausea. When I called my Dr. on Monday morning about the 12 days of N/V she did ask me if I was having a heart burn sensation-- which I am not-- and that if I was she thought I should be on reglan. She ended up giving me compazine because I needed something that was going to work a lot faster than reglan but when I go back to the Dr. on Dec. 13th, I am going to ask her about the reglan. She is such a sweetie but has no clue about RP. She doesn't realize that I have to increase my Prednisone at the first sign of a flare-- and won't let me do it UNLESS DR. TRENTHAM says to. My other big barrier is the fact that I have little to no voice to be able to be able to really communicate with her. I am not sure what the answer is, I just know that Iam about over the edge with all of this. The only thing the Dr.s want to discuss with me is quitting work and going on disability. I am having trouble accepting that at this point. I don't feel like we have done enough to try and get control of this disease. Maybe I am wrong about working, but..... Kathi >From: Lu1953@... >Reply-To: Rpolychondritis >To: Rpolychondritis >Subject: Re: Lu/Kathi >Date: Wed, 28 Nov 2001 17:06:14 EST > >Hi Kathi, >Wow, I can't believe that was your first symptom. What a horrible one to >have, there is nothing worse than nausea..or ear pain. or heck all of it. >Have you ever been on Imuran? That is what they switched me to, although > in our group couldn't take it, It made her sick. It helps, I have >less flares but I still do flare just not as much. Maybe a different drug >would help some. Did the zofran not help either? I lived on that stuff >while >on metho, and It helped some. What kind of doctor are you using is he a >rheumatologist? >love you, >Lu > > > > medicines haven't changed it a bit. I do wonder if I should change to > > something besides the methotrexate, not because of the nausea, but >becasue > > I > > just don't seem to be improving. I just don't know what to try next. >Any > > input would be greatful!! > > Kathi > > > > > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Hey lu you aren't far off track, it was named after my husbands great, great, great,???? grandfather, his name was , get this, MORGAN , funny right. dawn --- Lu1953@... wrote: > In a message dated 11/27/2001 2:10:40 PM Central > Standard Time, > dmorgan26347@... writes: > > > > i live close to morgantown, in a small town next > to > > grafton, wv. home of the mothers day shrine. > > if you get this way give a yell maybe we can get > > together > > > > dawn > > > > > > Dawn is it named after you? town? > Lu > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Hey lu you aren't far off track, it was named after my husbands great, great, great,???? grandfather, his name was , get this, MORGAN , funny right. dawn --- Lu1953@... wrote: > In a message dated 11/27/2001 2:10:40 PM Central > Standard Time, > dmorgan26347@... writes: > > > > i live close to morgantown, in a small town next > to > > grafton, wv. home of the mothers day shrine. > > if you get this way give a yell maybe we can get > > together > > > > dawn > > > > > > Dawn is it named after you? town? > Lu > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 Wow Dawn, They must have had trouble thinking of any other names. lol huh? lol yes, its funny. I have been searching my family tree lately and it has been a lot of fun. How are you feeling? Are you doing okay? Oh at least you can rest! You have your shopping done. lol Love ya Lu Hey lu you aren't far off track, it was named after my husbands great, great, great,???? grandfather, his name was , get this, MORGAN , funny right. dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 Wow Dawn, They must have had trouble thinking of any other names. lol huh? lol yes, its funny. I have been searching my family tree lately and it has been a lot of fun. How are you feeling? Are you doing okay? Oh at least you can rest! You have your shopping done. lol Love ya Lu Hey lu you aren't far off track, it was named after my husbands great, great, great,???? grandfather, his name was , get this, MORGAN , funny right. dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 happy birthday to you happy birthday to you happy birthday to luuuuu happy birthday to you and many more--- Rpolychondritis wrote: > > We would like to remind you of this upcoming event. > > Birthday Announcement > > Date: Tuesday, December 4, 2001 > Time: All Day > > Today is Lu's birthday. > HAPPY BIRTHDAY LU!!!!! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 happy birthday to you happy birthday to you happy birthday to luuuuu happy birthday to you and many more--- Rpolychondritis wrote: > > We would like to remind you of this upcoming event. > > Birthday Announcement > > Date: Tuesday, December 4, 2001 > Time: All Day > > Today is Lu's birthday. > HAPPY BIRTHDAY LU!!!!! > > > > > Quote Link to comment Share on other sites More sharing options...
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