Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 Kathleen, If you have been diagnosed with RP recently that is a great plus when it comes to this disease. At least the Dr. recognizes the RP and wants to get you into a good Rheumy. It sounds like you have a very busy life. I commend anyone who home schools that must really be rewarding and hard work. When I was first diagnosed it took awhile to get the meds straightened out and I was pretty sick. Now that they have the meds working appropriately I lead a fairly normal life now. Well as normal as it can be for me. With the meds I take I have had to learn to do things a little differently but at least I can still do them. I decided along time ago that RP wasn't going to win and take over my whole life. It is only a part of me and that is where it is going to stay. What symptoms do you have and what are your Dr. or Dr.'s doing for you? Lots of Love Glenda Sandy, Thanks for the reply. My ENT said that RP may be the culprit and he will look for a good rheumatologist who is knowledgable about it. I was happy to be taken seriously, but nervous about what RP might mean for me in the future... What kind of problems do you have now? I am a stay at home homeschooling mom of a beautiful 9 year old boy. I love dogs -- my corgi especially -- , gardening, and am active in my son's cub scout pack and my church. I am glad that a group exists for this rare disease. I went to the library today to try and learn more and couldn't find a thing... I am looking forward to getting to know you all. Kathleen --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.292 / Virus Database: 157 - Release Date: 10/26/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 Kathleen, If you have been diagnosed with RP recently that is a great plus when it comes to this disease. At least the Dr. recognizes the RP and wants to get you into a good Rheumy. It sounds like you have a very busy life. I commend anyone who home schools that must really be rewarding and hard work. When I was first diagnosed it took awhile to get the meds straightened out and I was pretty sick. Now that they have the meds working appropriately I lead a fairly normal life now. Well as normal as it can be for me. With the meds I take I have had to learn to do things a little differently but at least I can still do them. I decided along time ago that RP wasn't going to win and take over my whole life. It is only a part of me and that is where it is going to stay. What symptoms do you have and what are your Dr. or Dr.'s doing for you? Lots of Love Glenda Sandy, Thanks for the reply. My ENT said that RP may be the culprit and he will look for a good rheumatologist who is knowledgable about it. I was happy to be taken seriously, but nervous about what RP might mean for me in the future... What kind of problems do you have now? I am a stay at home homeschooling mom of a beautiful 9 year old boy. I love dogs -- my corgi especially -- , gardening, and am active in my son's cub scout pack and my church. I am glad that a group exists for this rare disease. I went to the library today to try and learn more and couldn't find a thing... I am looking forward to getting to know you all. Kathleen --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.292 / Virus Database: 157 - Release Date: 10/26/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 Glenda, Thanks so much for the reply. I have had severe throat pain with hoarseness, low grade fever, and terrible fatigue. That finally settled into a dull ache and my ears started to hurt. They itch and then begin to ache and burn. They don't get too red though, mostly just the pain. (That is what clued the ENT onto RP) I have costochondritis that sometimes flares, but usually is just a dull ache. I also have joint pain in my fingers, toes, and knees. The ENT gave me a Medrol dose pack to see how it would help. It seems to be taking the edge off, but I am still uncomfortable. Has anyone else taken that? It starts with 24mg of methylprednisolone and then tapers... The allergist gave it to my son, so I am thinking that it isn't too potent. Yes, homeschooling is a lot of work, but I wouldn't trade it for anything. I love having my son around and can't imagine him spending most of his days with strangers! What meds work for you? I am thinking that the Medrol might not be enough... Kathleen Re: Symptoms-Kathleen > Kathleen, > If you have been diagnosed with RP recently that is a great plus when it comes to this disease. At least the Dr. recognizes the RP and wants to get you into a good Rheumy. > > It sounds like you have a very busy life. I commend anyone who home schools that must really be rewarding and hard work. > > When I was first diagnosed it took awhile to get the meds straightened out and I was pretty sick. Now that they have the meds working appropriately I lead a fairly normal life now. Well as normal as it can be for me. With the meds I take I have had to learn to do things a little differently but at least I can still do them. > > I decided along time ago that RP wasn't going to win and take over my whole life. It is only a part of me and that is where it is going to stay. > > What symptoms do you have and what are your Dr. or Dr.'s doing for you? > > Lots of Love > Glenda > > Sandy, > > Thanks for the reply. My ENT said that RP may be the culprit and he will > look for a good rheumatologist who is knowledgable about it. I was happy to > be taken seriously, but nervous about what RP might mean for me in the > future... What kind of problems do you have now? > > I am a stay at home homeschooling mom of a beautiful 9 year old boy. I love > dogs -- my corgi especially -- , gardening, and am active in my son's cub > scout pack and my church. I am glad that a group exists for this rare > disease. I went to the library today to try and learn more and couldn't > find a thing... I am looking forward to getting to know you all. > > Kathleen > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.292 / Virus Database: 157 - Release Date: 10/26/2001 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 Glenda, Thanks so much for the reply. I have had severe throat pain with hoarseness, low grade fever, and terrible fatigue. That finally settled into a dull ache and my ears started to hurt. They itch and then begin to ache and burn. They don't get too red though, mostly just the pain. (That is what clued the ENT onto RP) I have costochondritis that sometimes flares, but usually is just a dull ache. I also have joint pain in my fingers, toes, and knees. The ENT gave me a Medrol dose pack to see how it would help. It seems to be taking the edge off, but I am still uncomfortable. Has anyone else taken that? It starts with 24mg of methylprednisolone and then tapers... The allergist gave it to my son, so I am thinking that it isn't too potent. Yes, homeschooling is a lot of work, but I wouldn't trade it for anything. I love having my son around and can't imagine him spending most of his days with strangers! What meds work for you? I am thinking that the Medrol might not be enough... Kathleen Re: Symptoms-Kathleen > Kathleen, > If you have been diagnosed with RP recently that is a great plus when it comes to this disease. At least the Dr. recognizes the RP and wants to get you into a good Rheumy. > > It sounds like you have a very busy life. I commend anyone who home schools that must really be rewarding and hard work. > > When I was first diagnosed it took awhile to get the meds straightened out and I was pretty sick. Now that they have the meds working appropriately I lead a fairly normal life now. Well as normal as it can be for me. With the meds I take I have had to learn to do things a little differently but at least I can still do them. > > I decided along time ago that RP wasn't going to win and take over my whole life. It is only a part of me and that is where it is going to stay. > > What symptoms do you have and what are your Dr. or Dr.'s doing for you? > > Lots of Love > Glenda > > Sandy, > > Thanks for the reply. My ENT said that RP may be the culprit and he will > look for a good rheumatologist who is knowledgable about it. I was happy to > be taken seriously, but nervous about what RP might mean for me in the > future... What kind of problems do you have now? > > I am a stay at home homeschooling mom of a beautiful 9 year old boy. I love > dogs -- my corgi especially -- , gardening, and am active in my son's cub > scout pack and my church. I am glad that a group exists for this rare > disease. I went to the library today to try and learn more and couldn't > find a thing... I am looking forward to getting to know you all. > > Kathleen > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.292 / Virus Database: 157 - Release Date: 10/26/2001 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 Hi Kathleen, Welcome to the group!! Reading your case history sounds extremely familiar to me. Especially the part about your throat, hoarseness, severe fatigue and low grade fevers. This is how mine all started almost 5 years ago. It took 4.5 years for me to be diagnosed. I lost my voice almost completely (some days I have a little whisper) Novemeber 2nd, last year. I did not have my first ear problems until December of last year, and was not Dx. with RP at the time, so did not associate the two things together. It sounds like you have a Dr. who is atleast looking in the right direction--(I think I remember your first post last week saying you hadn't been DX. with RP yet). What I have found is that if you don't have the ear involvement then Dr.'s tend not to look at, or think about RP. It just simply isn't true. I had it for 4.5 years before the first ear problems and then it took another 5 months to be diagnosed. I have had so much damage to my trachea and larynx that I will never have vocal ability again and it is all because I didn't have ear involvement from the onset. Just keep pursuing this with the Dr. you are seeing and keep asking the group a lot of questions. I have decided that the Dr.'s (for the most part) don't have a clue-- when I need to know something, this is where I turn. Good Luck to you!! Kathi > >Reply-To: Rpolychondritis >To: <Rpolychondritis > >Subject: Re: Symptoms-Kathleen >Date: Wed, 31 Oct 2001 08:11:31 -0600 > >Glenda, > >Thanks so much for the reply. I have had severe throat pain with >hoarseness, low grade fever, and terrible fatigue. That finally settled >into a dull ache and my ears started to hurt. They itch and then begin to >ache and burn. They don't get too red though, mostly just the pain. (That >is what clued the ENT onto RP) I have costochondritis that sometimes >flares, but usually is just a dull ache. I also have joint pain in my >fingers, toes, and knees. The ENT gave me a Medrol dose pack to see how it >would help. It seems to be taking the edge off, but I am still >uncomfortable. Has anyone else taken that? It starts with 24mg of >methylprednisolone and then tapers... The allergist gave it to my son, so >I >am thinking that it isn't too potent. > >Yes, homeschooling is a lot of work, but I wouldn't trade it for anything. >I love having my son around and can't imagine him spending most of his days >with strangers! > >What meds work for you? I am thinking that the Medrol might not be >enough... > >Kathleen > > Re: Symptoms-Kathleen > > > > Kathleen, > > If you have been diagnosed with RP recently that is a great plus when it >comes to this disease. At least the Dr. recognizes the RP and wants to >get >you into a good Rheumy. > > > > It sounds like you have a very busy life. I commend anyone who home >schools that must really be rewarding and hard work. > > > > When I was first diagnosed it took awhile to get the meds straightened >out >and I was pretty sick. Now that they have the meds working appropriately I >lead a fairly normal life now. Well as normal as it can be for me. With >the meds I take I have had to learn to do things a little differently but >at >least I can still do them. > > > > I decided along time ago that RP wasn't going to win and take over my >whole life. It is only a part of me and that is where it is going to stay. > > > > What symptoms do you have and what are your Dr. or Dr.'s doing for you? > > > > Lots of Love > > Glenda > > > > Sandy, > > > > Thanks for the reply. My ENT said that RP may be the culprit and he >will > > look for a good rheumatologist who is knowledgable about it. I was >happy to > > be taken seriously, but nervous about what RP might mean for me in the > > future... What kind of problems do you have now? > > > > I am a stay at home homeschooling mom of a beautiful 9 year old boy. >I >love > > dogs -- my corgi especially -- , gardening, and am active in my son's >cub > > scout pack and my church. I am glad that a group exists for this >rare > > disease. I went to the library today to try and learn more and >couldn't > > find a thing... I am looking forward to getting to know you all. > > > > Kathleen > > > > > > --- > > Outgoing mail is certified Virus Free. > > Checked by AVG anti-virus system (http://www.grisoft.com). > > Version: 6.0.292 / Virus Database: 157 - Release Date: 10/26/2001 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 Hi Kathleen, Welcome to the group!! Reading your case history sounds extremely familiar to me. Especially the part about your throat, hoarseness, severe fatigue and low grade fevers. This is how mine all started almost 5 years ago. It took 4.5 years for me to be diagnosed. I lost my voice almost completely (some days I have a little whisper) Novemeber 2nd, last year. I did not have my first ear problems until December of last year, and was not Dx. with RP at the time, so did not associate the two things together. It sounds like you have a Dr. who is atleast looking in the right direction--(I think I remember your first post last week saying you hadn't been DX. with RP yet). What I have found is that if you don't have the ear involvement then Dr.'s tend not to look at, or think about RP. It just simply isn't true. I had it for 4.5 years before the first ear problems and then it took another 5 months to be diagnosed. I have had so much damage to my trachea and larynx that I will never have vocal ability again and it is all because I didn't have ear involvement from the onset. Just keep pursuing this with the Dr. you are seeing and keep asking the group a lot of questions. I have decided that the Dr.'s (for the most part) don't have a clue-- when I need to know something, this is where I turn. Good Luck to you!! Kathi > >Reply-To: Rpolychondritis >To: <Rpolychondritis > >Subject: Re: Symptoms-Kathleen >Date: Wed, 31 Oct 2001 08:11:31 -0600 > >Glenda, > >Thanks so much for the reply. I have had severe throat pain with >hoarseness, low grade fever, and terrible fatigue. That finally settled >into a dull ache and my ears started to hurt. They itch and then begin to >ache and burn. They don't get too red though, mostly just the pain. (That >is what clued the ENT onto RP) I have costochondritis that sometimes >flares, but usually is just a dull ache. I also have joint pain in my >fingers, toes, and knees. The ENT gave me a Medrol dose pack to see how it >would help. It seems to be taking the edge off, but I am still >uncomfortable. Has anyone else taken that? It starts with 24mg of >methylprednisolone and then tapers... The allergist gave it to my son, so >I >am thinking that it isn't too potent. > >Yes, homeschooling is a lot of work, but I wouldn't trade it for anything. >I love having my son around and can't imagine him spending most of his days >with strangers! > >What meds work for you? I am thinking that the Medrol might not be >enough... > >Kathleen > > Re: Symptoms-Kathleen > > > > Kathleen, > > If you have been diagnosed with RP recently that is a great plus when it >comes to this disease. At least the Dr. recognizes the RP and wants to >get >you into a good Rheumy. > > > > It sounds like you have a very busy life. I commend anyone who home >schools that must really be rewarding and hard work. > > > > When I was first diagnosed it took awhile to get the meds straightened >out >and I was pretty sick. Now that they have the meds working appropriately I >lead a fairly normal life now. Well as normal as it can be for me. With >the meds I take I have had to learn to do things a little differently but >at >least I can still do them. > > > > I decided along time ago that RP wasn't going to win and take over my >whole life. It is only a part of me and that is where it is going to stay. > > > > What symptoms do you have and what are your Dr. or Dr.'s doing for you? > > > > Lots of Love > > Glenda > > > > Sandy, > > > > Thanks for the reply. My ENT said that RP may be the culprit and he >will > > look for a good rheumatologist who is knowledgable about it. I was >happy to > > be taken seriously, but nervous about what RP might mean for me in the > > future... What kind of problems do you have now? > > > > I am a stay at home homeschooling mom of a beautiful 9 year old boy. >I >love > > dogs -- my corgi especially -- , gardening, and am active in my son's >cub > > scout pack and my church. I am glad that a group exists for this >rare > > disease. I went to the library today to try and learn more and >couldn't > > find a thing... I am looking forward to getting to know you all. > > > > Kathleen > > > > > > --- > > Outgoing mail is certified Virus Free. > > Checked by AVG anti-virus system (http://www.grisoft.com). > > Version: 6.0.292 / Virus Database: 157 - Release Date: 10/26/2001 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 Kathleen, It sounds like you have had RP for a little while from the symptoms that is for sure. I have never heard of the med. that you are taking. It sounds like you might need to take a higher dose if it is just taking the edge off. It needs to be fully controlled and when they get the right meds it can be. Like you said you have and ENT that is working with you and that is the important thing! I wish I could home school our little one. It would be so much easier than trying to fight with the teachers and the school district. Sometimes I wonder what they are there for? I take Imuran only. I take pred only when I have to and Vioxx when I flare. I take 1500 mg of calcium and 2 multi vitamins a day. This is to replace what the pred. and or the Imuran doesn't allow my body to make. So far all has worked for over 7yrs now so I can't complain. Imuran is an anti rejection drug so it has to be watched to make sure that my body function stays the same and I have a good rhuemy who does just that. Well Take care and keep us posted on how things are going for you! Lots of Love Glenda The ENT gave me a Medrol dose pack to see how it would help. It seems to be taking the edge off, but I am still uncomfortable. Has anyone else taken that? It starts with 24mg of methylprednisolone and then tapers... The allergist gave it to my son, so I am thinking that it isn't too potent. Yes, homeschooling is a lot of work, but I wouldn't trade it for anything. I love having my son around and can't imagine him spending most of his days with strangers! What meds work for you? I am thinking that the Medrol might not be enough... Kathleen --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.293 / Virus Database: 158 - Release Date: 10/29/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 Kathleen, It sounds like you have had RP for a little while from the symptoms that is for sure. I have never heard of the med. that you are taking. It sounds like you might need to take a higher dose if it is just taking the edge off. It needs to be fully controlled and when they get the right meds it can be. Like you said you have and ENT that is working with you and that is the important thing! I wish I could home school our little one. It would be so much easier than trying to fight with the teachers and the school district. Sometimes I wonder what they are there for? I take Imuran only. I take pred only when I have to and Vioxx when I flare. I take 1500 mg of calcium and 2 multi vitamins a day. This is to replace what the pred. and or the Imuran doesn't allow my body to make. So far all has worked for over 7yrs now so I can't complain. Imuran is an anti rejection drug so it has to be watched to make sure that my body function stays the same and I have a good rhuemy who does just that. Well Take care and keep us posted on how things are going for you! Lots of Love Glenda The ENT gave me a Medrol dose pack to see how it would help. It seems to be taking the edge off, but I am still uncomfortable. Has anyone else taken that? It starts with 24mg of methylprednisolone and then tapers... The allergist gave it to my son, so I am thinking that it isn't too potent. Yes, homeschooling is a lot of work, but I wouldn't trade it for anything. I love having my son around and can't imagine him spending most of his days with strangers! What meds work for you? I am thinking that the Medrol might not be enough... Kathleen --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.293 / Virus Database: 158 - Release Date: 10/29/2001 Quote Link to comment Share on other sites More sharing options...
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