Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Address is http://rpolychondritis.tripod.com/index.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 In a message dated 03/31/2000 9:53:00 AM Central Standard Time, lotastuf@... writes: << What did YOU want to know when you were first dx'd? >> everything I could possibly find on RP....lol Hey Christy everytime I e-mail you it comes back and says your unknown?????? lol Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 I know! I'm sorry. I've done 6 boxer rescues in 3 days and my mailbox was neglected. I deleted as best I could every morning before " take-off " but obviously it wasn't enough. LOL I'm known. Trust me! LOL Re: survey<< What did YOU want to know when you were first dx'd? >>everything I could possibly find on RP....lol Hey Christy everytime I e-mail you it comes back and says your unknown?????? lolLu hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Sorry: what is the address? -----Original Message-----From: Christy Sent: Friday, March 31, 2000 5:49 AMTo: RpolychondritisonelistSubject: survey If you haven't been to the site, the new survey is up. I'm so proud! 9 people have been there without being reminded. I want to constantly add new things to the site to help others who may be beginning their search for information. Since I don't have RP. I'm relying on your help to guide me. What did YOU want to know when you were first dx'd? Christyhttp://SWGA_Boxer_Rescue.tripod.com"Happiness is a warm puppy" - Schultz (1922-2000) hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 Just missing one little letter. Try this: http://rpolychondritis.tripod.com/index.html >>>>>>>>>>>>>>>>>>>>> In a message dated 03/31/2000 1:06:54 PM Eastern Daylight Time, RCColloran@... writes: << Address is http://rpolychondritis.tripod.com/index.htm >> It must be me but when I put this in it says " no such place " HELP Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2000 Report Share Posted May 18, 2000 Carol, I think this site is great too. New questions are being added all the time, so I guess we should check it on a weekly basis. Thanks for the reply, Hope you are doing okay and are as pain free as possible. Have a great day. Love C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2000 Report Share Posted May 20, 2000 I'd like to welcome you (didn't get your name) and Jana to the group. I'm fairly new too and can only tell you that you've come to the right place. These people are sooo supportive and caring and they will become part of your family. You will learn so much and by asking questions we all learn (then we can teach our drs.)lol Hope you figured out the survey. I didn't have any problems (at least not on the survey).Hope to talk to you again. Love ya C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2000 Report Share Posted May 21, 2000 Does Jana have any questions for the group to try and help with? We would be glad to give you our own experiences with RP and what works and doesn't work for us as well. Glad you found us and Jana too. Let us know if you or she have any questions. We're all here to learn from each other. >>>>>>>>>>>>>>>>>>>>> My daughter-in-law was here for a short time today. She read all the e-mails I had copied for her this week and all the ones that came in since yesterday. She visited the survey site but had difficulty completing it. It seemed to stall about 1/3 of the way down. Did we do something wrong or has anyone else had a problem? Jana is her name and she had her first flare in January in her ears. Had another type about a month later in her joints and could hardly move. We are new at this and have learned a lot from the group. Right now she is on prednisone (hope that's spelled right) but is supposed to start taking methotrexate shortly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 , The survey is at http://www.rpolychondritist.tripod.com Seems like new questions are added daily. You can also add your own questions. Thanks again for the wonderful job. C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 you can go through the RP Website at http://rpolychondritis.tripod.com and click on Survey survey I am lost, which doesnt take much, but i have been gone for a bit and i want to get to the survey questions everyone is talking about. How do i get to the questions? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 How many members do we have? (including spouses, children) with RP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 , Try not to worry about tomorrow. My other problems came before RP (except the scleroderma, and now they aren't sure that I have it. Whew!!!) RP is so difficult by it's self. It's the not knowing that makes us crazy. Is this a flare or is it just another pain? Is my ear getting red, it feels sore? We question every little thing and we go bonkers, or at least I do. Now I'm trying to just take one day at a time and count my blessings for a good day. I hope you're feeling okay now. Take care of yourself. Love ya C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 Hi FDIWALL !! Sorry but I do not know your Name .But I just would like to tell you that my Husband has " only " RP too . Thank God. Then that is enough to give me a lot of gray hairs .LOL And yes he is on Medicine .He is on Prednison, Ibuprofen, Prilosce Cytotec.Zorco.And 3 different Vitamins. I think you might want to get a hold of a DR. what knows about RP, Then Yes your Husband needs to be on Medicine .Or He could have a lot of damage done ..Hope this will help and not scare you . Heidi > , > My husband thank goodness only has the RP as far as we can tell. All test > negative but still has the swollen ear, pain in back of his neck middle of > his chest and sunburn like rash on the insides of his legs(no blisters). Dr > say to take advil or motrin for pain but has yet to prescribe predisone, > which after emailing makes me concerned. Are you take any Medication? > > ------------------------------------------------------------------------ > Did you know you're using eGroups now? > Start a free email group today at > http://click./1/3947/1/_/32049/_/959032685/ > ------------------------------------------------------------------------ > > hi and welcome. maybe we can come up with answers that our doctors can't > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2000 Report Share Posted May 23, 2000 Yes I am on metho inj-.08cc or 20mg with pill 15mg pred folic acid, ferrus sulfate, magnesium, prilosec, my blood sugar was affected with the pred. so i have to take insulin 18units every morning Re: survey ,My husband thank goodness only has the RP as far as we can tell. All test negative but still has the swollen ear, pain in back of his neck middle of his chest and sunburn like rash on the insides of his legs(no blisters). Dr say to take advil or motrin for pain but has yet to prescribe predisone, which after emailing makes me concerned. Are you take any Medication? hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2000 Report Share Posted May 23, 2000 Thanks , i try not to worry as much now like i used to do. I try to relax and just be thankful for today. You're right love Re: survey , Try not to worry about tomorrow. My other problems came before RP (except the scleroderma, and now they aren't sure that I have it. Whew!!!) RP is so difficult by it's self. It's the not knowing that makes us crazy. Is this a flare or is it just another pain? Is my ear getting red, it feels sore? We question every little thing and we go bonkers, or at least I do. Now I'm trying to just take one day at a time and count my blessings for a good day. I hope you're feeling okay now. Take care of yourself.Love ya C hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2000 Report Share Posted May 25, 2000 , Kathleen (NY) .... I have only RP and no other associated diseases and predominantly in my left ear. Since seeing Dr. T in March, I was put on 1650 mgs of Anaprox when early signs of flares start and weekly doses of methotrexate .. that's it and is seems to have controlled it. I was one of the fortunate who was correctly diagnosed with my first flare. Due to height, weight, etc., The dose was only started at 10 mgs per week. I just saw Trentham for follow up on the 22nd and he reduced the dosage to 7.5 mgs for the next 8 weeks because my sed rate was 0 and my c-reactive protein was <0.5 ... this was really exiting news and am glad to downsize the dosage. If blood work stays normal, after 8 weeks and blood results, he will reduce again to 5 mgs. I see him again end of October and with those blood results and of course, if stabilized the way it is now, he says we'll stop the methotrexate and see where it takes us. He did say that he has had patients in remission anywhere from 2 to 13 years. I know there are many in this group that suffer greatly from this disease and I always feel guilty saying how much better I feel, but you are all in my prayers ( and Angie ... haven't heard much from both of them lately and hope all is well) and I feel with the right medicines and the input we all produce, especially the excellent info provided by people like Hobb, we'll all live a lot longer than the expectations they first produced in some of the earlier studies of this disease. I also am a firm believer in positive attitude, exercise your brains out if you can, eat well, take your supplements (excluding those that counteract your treatments) and keep reading every little tiny article you can find to help our RP family. Okay, I'm rambling .... gotta run. But want all those that asked about my son, Rob who was in the hospital last week ... we still have no answers. He sees his Dr. tomorrow, so hopefully will know more then. Have a wonderful long and restful holiday weekend. Just me, Kathleen (NY) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2000 Report Share Posted May 25, 2000 Kathleen, So glad to hear that the blood tests were good and that you can decrease your meth. I'm a firm believer that remission is possible. I'm continuing to reduce my pred slowly and with any luck will be off. Then maybe I can slowly decrease my meth. Wouldn't that be wonderful for all of us. Let us know as soon as you hear how Rob is doing. Will keep him in my prayers. Have a wonderful weekend. Love, C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2000 Report Share Posted May 26, 2000 Thanks , I'll update you after the weekend. Kathleen (NY) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2000 Report Share Posted May 29, 2000 In a message dated 5/26/00 9:44:40 AM Central Daylight Time, ssheridan@... writes: << I am especially curious about the # of persons on disability. >> Rene here! Where is this survey list? I've been on disability since 1995 from my job. SSD since Jan. 1999. Retro to 1995. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2000 Report Share Posted May 29, 2000 Go to the RP Website at http://rpolychondritis.tripod.com and look about half way down the main page..... Re: Survey << I am especially curious about the # of persons on disability. >>Rene here! Where is this survey list? I've been on disability since 1995 from my job.SSD since Jan. 1999. Retro to 1995. hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2000 Report Share Posted May 29, 2000 Help!!!_Pete has been doing the survey all along with no problems...today when I went in so he could answer new questions..it wouldn't " Take " his responses....You know how it changes to " already voted " ..well it didn't..anyway is it just us??should I just try again?? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2000 Report Share Posted May 29, 2000 Janet, I just went to the survey and it did the same thing to me. I registerd my vote, but didn't show I voted. Hope that is the right Dr. . Let me know if it is. How is Pete doing. He is in my prayers along with all the others. Sure hope he is better than last week. Take care. Love & hugs C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2000 Report Share Posted May 30, 2000 I keep reading about blood tests. What are the blood tests showing and what do we ask them to look for. Ron's Dr's nurse called back with the results of his routine blood work from his routine physical that diagnosed him with RP. They lost and then found them. She told him cholestreral was 217 and prostrate test good and everything looked good so to keep doing what he was doing because he looks very healthy. He said, " Not according to you I'm not I have RP. If I don't get it off my work physical. " She said, Oh she didn't know about that Dr was waiting to talk to the Dermotologist who didn't see the active flare and said Ron didn't have it. Enough already it is just frutrating. I am sure you all know. Boy, Pete sounds like he has an awesome DR. Gotta go Tina RCColloran@... wrote: > Kathleen, So glad to hear that the blood tests were good and that you can > decrease your meth. I'm a firm believer that remission is possible. I'm > continuing to reduce my pred slowly and with any luck will be off. Then > maybe I can slowly decrease my meth. Wouldn't that be wonderful for all of > us. Let us know as soon as you hear how Rob is doing. Will keep him in my > prayers. Have a wonderful weekend. > > Love, > C > > ------------------------------------------------------------------------ > fnCentral.com: it's where you are! Be deskbound no more. No apps. > Use the web's first fully integrated personal finance manager > from any PC, Palm, phone, internet appliance! OPEN A FREE ACCOUNT NOW. > http://click./1/4647/1/_/32049/_/959309522/ > ------------------------------------------------------------------------ > > hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 Tina, the blood work I have done is a CBC (complete blood count) and liver and kidney function test every month. This is because I'm on Methotrexate. They also run a sed rate and C-reactive protein test monthly to determine inflamation. The sed rate and crp is also on a standing order so if I think I'm in a flare I can go and have the test done. I usually know and just up my pred, but there have been a few instances where I just felt really bad with no sign of flare and when I had the test done the sed rate came back at 65. (under 20 is normal) I don't know what the others have done. Hope you are feeling better and have a good day. Love C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2001 Report Share Posted April 3, 2001 Hi Don, My name is Rich. What exactly are you looking for in this survey? and why? I thought (and please correct me if I am wrong) that any surveys' were going to be initiated by Karyn or Tull. Although the concept might be instigated by anyone, they were going to go through them at their discretion in order to maintain the integrity of the group and maintain its' concept and focus. I am all for surveys and would be sure to learn a lot from any information compiled and tabulated. I am just asking! I realise Kanyn is not so well these days but Tull is the " Boss " , mediator or whatever so I was just wondering. Please people don't write me any " stink mail " I am just asking and trying to abide what I believe is the protocal of the group. Aloha, Rich Quote Link to comment Share on other sites More sharing options...
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