Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Kathi Boy it sounds like you are having a time of it! I have heard with the ears that some have had it so bad that the bleed. I have never had it that bad and can only imagine how bad that hurts. It is bad enough when they flare like they do but to cause lesions must be even worse. The eye thing I can't help you with but I know someone that can! Angie where are you? She told me that an eye flare hurt,turned red, and felt like there was grit in it. Also like there was something in you eye like an eyelash but nothing is there. Does this help. My flares are not bad now that I am on the Imuran. It keeps the flares to a low roar! Take care and get to the dr. with the eye flares if you can! Lots of Love Glenda ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.277 / Virus Database: 146 - Release Date: 9/5/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Kathi Boy it sounds like you are having a time of it! I have heard with the ears that some have had it so bad that the bleed. I have never had it that bad and can only imagine how bad that hurts. It is bad enough when they flare like they do but to cause lesions must be even worse. The eye thing I can't help you with but I know someone that can! Angie where are you? She told me that an eye flare hurt,turned red, and felt like there was grit in it. Also like there was something in you eye like an eyelash but nothing is there. Does this help. My flares are not bad now that I am on the Imuran. It keeps the flares to a low roar! Take care and get to the dr. with the eye flares if you can! Lots of Love Glenda ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.277 / Virus Database: 146 - Release Date: 9/5/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Glenda, I also have the things with my eyes that you described. My eyes are always red because they are so severly dry all of the time and they also feel like there is something in them. I often times have to blink because it feels that something is in them and they get blurry. As for my ears-- the strange thing is that I have never really had that much problem with them. Even when I had the 2 episodes many months ago, before I was diagnosed, with the ear pain, my ears did not turn red or get hot and swollen. The thing that causes the pain in my ears is this burning sensation AND in the last few months I have started having INTERNAL ear pain that feels like someone is jabbing the inside of my ear with an ice pick. This only lasts a few seconds at a time. It surprised me when I had a hearing test done in July and was found to have hearing loss of the high and low tones specifically in my right ear-- which is the ear I have the most problem with. I have no idea when this occured where my ear started breaking down around the top portion-- what I described earlier as it looks like someone has cut small chunks out of my ear. It wasn't painful while it was occuring. Thanks for your input!! Kathi > >Reply-To: Rpolychondritis >To: <Rpolychondritis > >Subject: Re: Kathi >Date: Thu, 6 Sep 2001 18:30:12 -0700 > >Kathi >Boy it sounds like you are having a time of it! I have heard with the ears >that some have had it so bad that the bleed. I have never had it that bad >and can only imagine how bad that hurts. It is bad enough when they flare >like they do but to cause lesions must be even worse. > >The eye thing I can't help you with but I know someone that can! Angie >where are you? She told me that an eye flare hurt,turned red, and felt >like there was grit in it. Also like there was something in you eye like >an eyelash but nothing is there. Does this help. My flares are not bad >now that I am on the Imuran. It keeps the flares to a low roar! > >Take care and get to the dr. with the eye flares if you can! >Lots of Love >Glenda > > > >--- >Outgoing mail is certified Virus Free. >Checked by AVG anti-virus system (http://www.grisoft.com). >Version: 6.0.277 / Virus Database: 146 - Release Date: 9/5/2001 _________________________________________________________________ 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 September 6, 2001 Report Share Posted September 6, 2001 Kathi What meds are you taking? I hope more than just pred when you flare. You should be on some type of a maintenance drug to control the flares! You are welcome for any info. I can give you. I don't know much but there are those in the group that do and that is what we are all here for to help each other. Keep posting you will get the answers you need! Lots of Love Glenda It surprised me when I had a hearing test done in July and was found to have hearing loss of the high and low tones specifically in my right ear-- which is the ear I have the most problem with. I have no idea when this occured where my ear started breaking down around the top portion-- what I described earlier as it looks like someone has cut small chunks out of my ear. It wasn't painful while it was occuring. Thanks for your input!!Kathi ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.277 / Virus Database: 146 - Release Date: 9/5/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Glenda, I also have the things with my eyes that you described. My eyes are always red because they are so severly dry all of the time and they also feel like there is something in them. I often times have to blink because it feels that something is in them and they get blurry. As for my ears-- the strange thing is that I have never really had that much problem with them. Even when I had the 2 episodes many months ago, before I was diagnosed, with the ear pain, my ears did not turn red or get hot and swollen. The thing that causes the pain in my ears is this burning sensation AND in the last few months I have started having INTERNAL ear pain that feels like someone is jabbing the inside of my ear with an ice pick. This only lasts a few seconds at a time. It surprised me when I had a hearing test done in July and was found to have hearing loss of the high and low tones specifically in my right ear-- which is the ear I have the most problem with. I have no idea when this occured where my ear started breaking down around the top portion-- what I described earlier as it looks like someone has cut small chunks out of my ear. It wasn't painful while it was occuring. Thanks for your input!! Kathi > >Reply-To: Rpolychondritis >To: <Rpolychondritis > >Subject: Re: Kathi >Date: Thu, 6 Sep 2001 18:30:12 -0700 > >Kathi >Boy it sounds like you are having a time of it! I have heard with the ears >that some have had it so bad that the bleed. I have never had it that bad >and can only imagine how bad that hurts. It is bad enough when they flare >like they do but to cause lesions must be even worse. > >The eye thing I can't help you with but I know someone that can! Angie >where are you? She told me that an eye flare hurt,turned red, and felt >like there was grit in it. Also like there was something in you eye like >an eyelash but nothing is there. Does this help. My flares are not bad >now that I am on the Imuran. It keeps the flares to a low roar! > >Take care and get to the dr. with the eye flares if you can! >Lots of Love >Glenda > > > >--- >Outgoing mail is certified Virus Free. >Checked by AVG anti-virus system (http://www.grisoft.com). >Version: 6.0.277 / Virus Database: 146 - Release Date: 9/5/2001 _________________________________________________________________ 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 September 6, 2001 Report Share Posted September 6, 2001 Kathi What meds are you taking? I hope more than just pred when you flare. You should be on some type of a maintenance drug to control the flares! You are welcome for any info. I can give you. I don't know much but there are those in the group that do and that is what we are all here for to help each other. Keep posting you will get the answers you need! Lots of Love Glenda It surprised me when I had a hearing test done in July and was found to have hearing loss of the high and low tones specifically in my right ear-- which is the ear I have the most problem with. I have no idea when this occured where my ear started breaking down around the top portion-- what I described earlier as it looks like someone has cut small chunks out of my ear. It wasn't painful while it was occuring. Thanks for your input!!Kathi ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.277 / Virus Database: 146 - Release Date: 9/5/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2001 Report Share Posted September 26, 2001 Hi Kathi, I just checked and your mail is set to get individual e-mails. If you need me or someone else to change it until you get the problem cleared up just say so. okay? Sorry you are having problems. Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2001 Report Share Posted September 26, 2001 Hi Kathi, I just checked and your mail is set to get individual e-mails. If you need me or someone else to change it until you get the problem cleared up just say so. okay? Sorry you are having problems. Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2001 Report Share Posted September 26, 2001 Thanks Lu, but it seems to be working fine now!! At least the last couple of days have been better! Kathi >From: Lu1953@... >Reply-To: Rpolychondritis >To: Rpolychondritis >Subject: Kathi >Date: Wed, 26 Sep 2001 17:20:48 EDT > >Hi Kathi, I just checked and your mail is set to get individual e-mails. If >you need me or someone else to change it until you get the problem cleared >up >just say so. okay? Sorry you are having problems. >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 September 26, 2001 Report Share Posted September 26, 2001 Thanks Lu, but it seems to be working fine now!! At least the last couple of days have been better! Kathi >From: Lu1953@... >Reply-To: Rpolychondritis >To: Rpolychondritis >Subject: Kathi >Date: Wed, 26 Sep 2001 17:20:48 EDT > >Hi Kathi, I just checked and your mail is set to get individual e-mails. If >you need me or someone else to change it until you get the problem cleared >up >just say so. okay? Sorry you are having problems. >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 September 26, 2001 Report Share Posted September 26, 2001 Thanks Lu, but it seems to be working fine now!! At least the last couple of days have been better! Kathi Great Kathi, any of our moderators can change your mail status. Everything looked okay to me. I hope it continues to stay in working order. take care, Love, Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2001 Report Share Posted September 26, 2001 Thanks Lu, but it seems to be working fine now!! At least the last couple of days have been better! Kathi Great Kathi, any of our moderators can change your mail status. Everything looked okay to me. I hope it continues to stay in working order. take care, Love, Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2001 Report Share Posted September 27, 2001 In a message dated 9/27/01 10:53:39 AM Pacific Daylight Time, angelhearts61@... writes: << 1)For those of you on Imuran-- where you on Methotrexate first? If so, for how long and why did you change to Imuran? Has the Imuran been more beneficial? (2) Dr. Trentham told me not to let anyone put me on Folic Acid, but I notice that so many of you are on this. I battle severe nausea >> Kathi, I was on Methotrexate for a year. For me it wasn't working... I was raising my pred instead of lowering it. It made me feel yucky and my life was worse on it than off of it. LOL I was taking Folic Acid with it and both of my rheumys said to be on it. IT Did help alot... I wasn't nauseated before metho. I then tried Imuran... but unfortunately it made me REALLY sick... It usually doesn't do this to people... I just couldnt take it... Tried for 3 months and then told my dr. NO MORE. I react differently than most people to drugs... so please don't go just by me... These medications work wonders for most people... It takes about 3 months for these drugs to even start working. I REALLY gave metho my best shot.... it just didn't work for me. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2001 Report Share Posted September 27, 2001 In a message dated 9/27/01 10:53:39 AM Pacific Daylight Time, angelhearts61@... writes: << 1)For those of you on Imuran-- where you on Methotrexate first? If so, for how long and why did you change to Imuran? Has the Imuran been more beneficial? (2) Dr. Trentham told me not to let anyone put me on Folic Acid, but I notice that so many of you are on this. I battle severe nausea >> Kathi, I was on Methotrexate for a year. For me it wasn't working... I was raising my pred instead of lowering it. It made me feel yucky and my life was worse on it than off of it. LOL I was taking Folic Acid with it and both of my rheumys said to be on it. IT Did help alot... I wasn't nauseated before metho. I then tried Imuran... but unfortunately it made me REALLY sick... It usually doesn't do this to people... I just couldnt take it... Tried for 3 months and then told my dr. NO MORE. I react differently than most people to drugs... so please don't go just by me... These medications work wonders for most people... It takes about 3 months for these drugs to even start working. I REALLY gave metho my best shot.... it just didn't work for me. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2001 Report Share Posted September 29, 2001 Could someone please re-send Barbara A.'s e-mail address. I have tried the one that is listed towards the bottom of this e-mail and have tried a couple of different varieties of it but it won't go through. Thanks, Kathi angerhob@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2001 Report Share Posted September 29, 2001 Could someone please re-send Barbara A.'s e-mail address. I have tried the one that is listed towards the bottom of this e-mail and have tried a couple of different varieties of it but it won't go through. Thanks, Kathi angerhob@... Quote Link to comment Share on other sites More sharing options...
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