Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 She just won't do anything not recommended by Dr. Trentham and that is where my problem is. Hi Kathi, I think Dr. T. is okay but he hasn't seen you and I think all of us have different cases of RP. I think you should print some articles from the latest info on RP and take them to the doctor with you. Why does she refer only to Trentham? I have a couple of good articles...I have to find them first but I will send them to you. Your doctor sounds great but she is relying to much on what someone else says on how to treat you and only one person. Oh,I'll shut up before I say too much! lol Love ya Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 She just won't do anything not recommended by Dr. Trentham and that is where my problem is. Hi Kathi, I think Dr. T. is okay but he hasn't seen you and I think all of us have different cases of RP. I think you should print some articles from the latest info on RP and take them to the doctor with you. Why does she refer only to Trentham? I have a couple of good articles...I have to find them first but I will send them to you. Your doctor sounds great but she is relying to much on what someone else says on how to treat you and only one person. Oh,I'll shut up before I say too much! lol Love ya Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Ann, I know I have seen this somewhere... I will look and see what I can find. << Lu, If you can find the article on treatment would you let me know. My Dr. thinks 20mg. of pred. is enough even though my ear keeps flaring. Thanks Ann >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Ann, I know I have seen this somewhere... I will look and see what I can find. << Lu, If you can find the article on treatment would you let me know. My Dr. thinks 20mg. of pred. is enough even though my ear keeps flaring. Thanks Ann >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Lu, I have seen Dr. Trentham. I flew to see him in June and that is when I was diagnosed. He sent her a letter telling her how to treat me. If you can find some good articles that specifically talk about treatment, please forward them to me. So far, I have not been successful with that. I want something that specifically talks about the need to increase Prednisone with the first sign of a flare. Thanks, Kathi >From: Lu1953@... >Reply-To: Rpolychondritis >To: Rpolychondritis >Subject: Re: Lu/Kathi >Date: Wed, 28 Nov 2001 20:28:32 EST > >In a message dated 11/28/2001 5:35:49 PM Central Standard Time, >angelhearts61@... writes: > > > > She just won't do anything not > > recommended by Dr. Trentham and that is where my problem is. > >Hi Kathi, >I think Dr. T. is okay but he hasn't seen you and I think all of us have >different cases of RP. I think you should print some articles from the >latest >info on RP and take them to the doctor with you. Why does she refer only to >Trentham? I have a couple of good articles...I have to find them first but >I >will send them to you. Your doctor sounds great but she is relying to much >on >what someone else says on how to treat you and only one person. >Oh,I'll shut up before I say too much! lol >Love ya >Lu _________________________________________________________________ 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, I have seen Dr. Trentham. I flew to see him in June and that is when I was diagnosed. He sent her a letter telling her how to treat me. If you can find some good articles that specifically talk about treatment, please forward them to me. So far, I have not been successful with that. I want something that specifically talks about the need to increase Prednisone with the first sign of a flare. Thanks, Kathi >From: Lu1953@... >Reply-To: Rpolychondritis >To: Rpolychondritis >Subject: Re: Lu/Kathi >Date: Wed, 28 Nov 2001 20:28:32 EST > >In a message dated 11/28/2001 5:35:49 PM Central Standard Time, >angelhearts61@... writes: > > > > She just won't do anything not > > recommended by Dr. Trentham and that is where my problem is. > >Hi Kathi, >I think Dr. T. is okay but he hasn't seen you and I think all of us have >different cases of RP. I think you should print some articles from the >latest >info on RP and take them to the doctor with you. Why does she refer only to >Trentham? I have a couple of good articles...I have to find them first but >I >will send them to you. Your doctor sounds great but she is relying to much >on >what someone else says on how to treat you and only one person. >Oh,I'll shut up before I say too much! lol >Love ya >Lu _________________________________________________________________ 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, If you can find the article on treatment would you let me know. My Dr. thinks 20mg. of pred. is enough even though my ear keeps flaring. Thanks Ann Re: Lu/Kathi >Date: Wed, 28 Nov 2001 20:28:32 EST > >In a message dated 11/28/2001 5:35:49 PM Central Standard Time, >angelhearts61@... writes: > > > > She just won't do anything not > > recommended by Dr. Trentham and that is where my problem is. > >Hi Kathi, >I think Dr. T. is okay but he hasn't seen you and I think all of us have >different cases of RP. I think you should print some articles from the >latest >info on RP and take them to the doctor with you. Why does she refer only to >Trentham? I have a couple of good articles...I have to find them first but >I >will send them to you. Your doctor sounds great but she is relying to much >on >what someone else says on how to treat you and only one person. >Oh,I'll shut up before I say too much! lol >Love ya >Lu _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp DISCLAIMER!! WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Lu, If you can find the article on treatment would you let me know. My Dr. thinks 20mg. of pred. is enough even though my ear keeps flaring. Thanks Ann Re: Lu/Kathi >Date: Wed, 28 Nov 2001 20:28:32 EST > >In a message dated 11/28/2001 5:35:49 PM Central Standard Time, >angelhearts61@... writes: > > > > She just won't do anything not > > recommended by Dr. Trentham and that is where my problem is. > >Hi Kathi, >I think Dr. T. is okay but he hasn't seen you and I think all of us have >different cases of RP. I think you should print some articles from the >latest >info on RP and take them to the doctor with you. Why does she refer only to >Trentham? I have a couple of good articles...I have to find them first but >I >will send them to you. Your doctor sounds great but she is relying to much >on >what someone else says on how to treat you and only one person. >Oh,I'll shut up before I say too much! lol >Love ya >Lu _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp DISCLAIMER!! WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Sorry Kathi, I'm reading my mail from the bottom up I am so behind. Okay I will start looking thru my stuff I do have some great articles, my problem is finding them. lol I didn't realize you had been to Trentham, I know lots of folks like him but I also know some rheumys professors don't. I'm not sure why, but some tend to disagree with him. One of my did, but he has retired now. He was one of top 100 best doctors list in the USA when I started going to him. I'll see what I can find, since its almost 3 am I think its time for me to go to bed. I will see in the next few days what I can gather up for you. Sorry this post is so late. Love you Lu Lu, I have seen Dr. Trentham. I flew to see him in June and that is when I was diagnosed. He sent her a letter telling her how to treat me. If you can find some good articles that specifically talk about treatment, please forward them to me. So far, I have not been successful with that. I want something that specifically talks about the need to increase Prednisone with the first sign of a flare. Thanks, Kathi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Sorry Kathi, I'm reading my mail from the bottom up I am so behind. Okay I will start looking thru my stuff I do have some great articles, my problem is finding them. lol I didn't realize you had been to Trentham, I know lots of folks like him but I also know some rheumys professors don't. I'm not sure why, but some tend to disagree with him. One of my did, but he has retired now. He was one of top 100 best doctors list in the USA when I started going to him. I'll see what I can find, since its almost 3 am I think its time for me to go to bed. I will see in the next few days what I can gather up for you. Sorry this post is so late. Love you Lu Lu, I have seen Dr. Trentham. I flew to see him in June and that is when I was diagnosed. He sent her a letter telling her how to treat me. If you can find some good articles that specifically talk about treatment, please forward them to me. So far, I have not been successful with that. I want something that specifically talks about the need to increase Prednisone with the first sign of a flare. Thanks, Kathi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Lu, If you can find the article on treatment would you let me know. My Dr. thinks 20mg. of pred. is enough even though my ear keeps flaring. Thanks Ann Ann are you on anything else? Only the pred.? Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Lu, If you can find the article on treatment would you let me know. My Dr. thinks 20mg. of pred. is enough even though my ear keeps flaring. Thanks Ann Ann are you on anything else? Only the pred.? Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Lu, I also take Trexall 15mg. once a week. But this hasn't stopped my flares. This last weekend I had a bad flare that affected my asthma. Along with the ear and breastbone. Ann -----Original Message-----From: Lu1953@... Sent: Wednesday, December 05, 2001 3:33 AMTo: Rpolychondritis Subject: Re: Lu/Kathi Lu, If you can find the article on treatment would you let me know. My Dr. thinks 20mg. of pred. is enough even though my ear keeps flaring. Thanks Ann Ann are you on anything else? Only the pred.? Lu DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Lu, I also take Trexall 15mg. once a week. But this hasn't stopped my flares. This last weekend I had a bad flare that affected my asthma. Along with the ear and breastbone. Ann -----Original Message-----From: Lu1953@... Sent: Wednesday, December 05, 2001 3:33 AMTo: Rpolychondritis Subject: Re: Lu/Kathi Lu, If you can find the article on treatment would you let me know. My Dr. thinks 20mg. of pred. is enough even though my ear keeps flaring. Thanks Ann Ann are you on anything else? Only the pred.? Lu DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2001 Report Share Posted December 6, 2001 HI Ann, I would call my doctor if I were you. Maybe he needs to change a drug or increase your pred just until you get your flares under control. Then you can slowly taper off the pred. Please call him and let me know what he says. Take care, feel better! Love Lu Lu, I also take Trexall 15mg. once a week. But this hasn't stopped my flares. This last weekend I had a bad flare that affected my asthma. Along with the ear and breastbone. Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2001 Report Share Posted December 6, 2001 HI Ann, I would call my doctor if I were you. Maybe he needs to change a drug or increase your pred just until you get your flares under control. Then you can slowly taper off the pred. Please call him and let me know what he says. Take care, feel better! Love Lu Lu, I also take Trexall 15mg. once a week. But this hasn't stopped my flares. This last weekend I had a bad flare that affected my asthma. Along with the ear and breastbone. Ann Quote Link to comment Share on other sites More sharing options...
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