Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 In a message dated 1/3/02 10:03:41 PM Pacific Standard Time, starangel688_@... writes: << I have a ?> is rp in itself fatal? or can you live along life with it? >> BJ... You can live a real long life with it... Don't believe everything that you read.. some of it is old. Dwight in our group is over 80 and I plan to out live that. I think the deaths are caused from not being diagnosed soon enough and having a secondary infection. That is just my feeling. If we stop the flares, less damage is done. Medicine has come a long way too. They can treat us with so many different drugs that they didn't know of years ago. You just plan on being around a LONG time, like the rest of us. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 Ann, sorry to hear that you're having to deal with so much. Just wanted to let you know that I too have had several ear flares without swelling. As for dizzy spells, I started getting them this summer and never associated it with the RP until I started seeing other members' posts on this site. For what it's worth, there is an article at http://www.geocities.com/SoHo/Gallery/6412/RelapsingPoly.htm that specifically says inner and middle ear involvement can occur, causing hearing loss or vertigo. Hope you get to feeling better real soon. Let us know if the increased meds work. -----Original Message-----From: Ann McClintock Sent: Thursday, January 03, 2002 2:23 PMTo: Rpolychondritis Subject: My rhuemy visit Well everyone I had my visit with the rheumy. He still wants a picture of myflare. I had the beginnings of a flare today the redness on my chest andthe pain. So he gave me a steroid shot. Almost went through the table. Heincreased the pred. to 25 mg. and the metho to 25 mg. Put me on paxal forthe boo hoos. Wants me to see a neurologist for my dizzy spells because youdon't get dizzy with Rp, but it does have neurology effects. Figure that oneout. And I'm not really having a flare unless my ear is really red andswollen. Well I've had flares and my ear turns red but it doesn'tnecessarily swell. My chest cavity does.Gave me some web sites to check out. Is it true that RP doesn't affect theinner ear?There is probably more but can't remember. If I think of something I'll jotit down.AnnDISCLAIMER!!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 January 3, 2002 Report Share Posted January 3, 2002 I have a ?> is rp in itself fatal? or can you live along life with it? RE: My rheumy visit Ann, sorry to hear that you're having to deal with so much. Just wanted to let you know that I too have had several ear flares without swelling. As for dizzy spells, I started getting them this summer and never associated it with the RP until I started seeing other members' posts on this site. For what it's worth, there is an article at http://www.geocities.com/SoHo/Gallery/6412/RelapsingPoly.htm that specifically says inner and middle ear involvement can occur, causing hearing loss or vertigo. Hope you get to feeling better real soon. Let us know if the increased meds work. -----Original Message-----From: Ann McClintock Sent: Thursday, January 03, 2002 2:23 PMTo: Rpolychondritis Subject: My rhuemy visit Well everyone I had my visit with the rheumy. He still wants a picture of myflare. I had the beginnings of a flare today the redness on my chest andthe pain. So he gave me a steroid shot. Almost went through the table. Heincreased the pred. to 25 mg. and the metho to 25 mg. Put me on paxal forthe boo hoos. Wants me to see a neurologist for my dizzy spells because youdon't get dizzy with Rp, but it does have neurology effects. Figure that oneout. And I'm not really having a flare unless my ear is really red andswollen. Well I've had flares and my ear turns red but it doesn'tnecessarily swell. My chest cavity does.Gave me some web sites to check out. Is it true that RP doesn't affect theinner ear?There is probably more but can't remember. If I think of something I'll jotit down.AnnDISCLAIMER!!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 January 7, 2002 Report Share Posted January 7, 2002 When at these sites, click on patient info These are sites for rheumatoid arthritis. Which I don't have. Why did the doctor have you look them up then? ugh! Rheumy's make me so mad. lol Do they ever just listen? love u Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2002 Report Share Posted January 7, 2002 Lu. It's me again. I guess I should have read all my mail before I responded to the first. The web sites are:Rheuma.bham.ac.uk/home.htm www.medscape.com www.arthritis.org Arthritiscentral.com www.rheumatology.org When at these sites, click on patient info These are sites for rheumatoid arthritis. Which I don't have. Ann -----Original Message-----From: Lu1953@... Sent: Monday, January 07, 2002 8:29 PMTo: Rpolychondritis Subject: Re: My rhuemy visitHi Ann, This Rp doctors makes me so mad, do they ever really listen? What web sites did he give you to view? Maybe we should look them up also? Maybe we should load up your doctor with tons of info on RP, do you think it would help? lol NO! Hope your feeling better. Take care, Love Lu And I'm not really having a flare unless my ear is really red and swollen. Well I've had flares and my ear turns red but it doesn't necessarily swell. My chest cavity does. Gave me some web sites to check out. Is it true that RP doesn't affect the inner ear? 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 March 28, 2002 Report Share Posted March 28, 2002 Well I went to the rheumy today & it was like he was a whole different Dr. No resident came in first to do the exam & then go over the results with the Dr. He just came in. We went over all my problems from head to foot. He checked my eyes, looked at my ears, listened to my lungs & heart etc. We discussed the swelling problem & I stated that the swelling is due to the Imuran. Ted & I assured him I did not have the foot swelling before the Imuran. I am to go off the Imuran & start Methotrexate & folic acid. I also asked him to look at my right ankle because when I was putting the seatbelt around 's (my grandson) carseat I was kneeling on the floor of the truck and as I backed up to get out I felt & heard something snap or pop & then had pain halfway up to my knee. He thinks I ruptured my achilles tendon. He gave me a referral for an MRI which of course they can't do until next week. I have a call into my PCP to call me tomorrow to at least shed some light on what to do for it until then, or to see if she can get me in sooner. He then brought up the subject of Mayo. He said he was in agreement and would back me up if I want to go. He said they may have seen 100 patients to his few & that they would rerun all the tests etc but they might have something better as far as a treatment regimen than he does. We told him we understood that there is no set treatment for any of us & that what works for one will not work for the next one. He said it's a lot different when you have a million people with something versus a hand full of us who have this disease. I must say I came out of there feeling fairly good considering I went there with Ted & we were going to tell him to take a hike. He took the time to answer our questions & double checked everything I've been going over for four months. Well that's it for now. Will be getting the Metho filled & I might wait till Monday to take it. Sure would hate to ruin Easter by not feeling well. thanks for all your concern. Luv ya, Susiecue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 Susiecue! Good for you! I'm glad you finally found one you like and who takes the time to treat you as the unique patient that you are! And God knows we are unique! Sounds like you found a keeper. Love, Judy My rheumy visit Well I went to the rheumy today & it was like he was a whole different Dr. No resident came in first to do the exam & then go over the results with the Dr. He just came in. We went over all my problems from head to foot. He checked my eyes, looked at my ears, listened to my lungs & heart etc. We discussed the swelling problem & I stated that the swelling is due to the Imuran. Ted & I assured him I did not have the foot swelling before the Imuran. I am to go off the Imuran & start Methotrexate & folic acid. I also asked him to look at my right ankle because when I was putting the seatbelt around 's (my grandson) carseat I was kneeling on the floor of the truck and as I backed up to get out I felt & heard something snap or pop & then had pain halfway up to my knee. He thinks I ruptured my achilles tendon. He gave me a referral for an MRI which of course they can't do until next week. I have a call into my PCP to call me tomorrow to at least shed some light on what to do for it until then, or to see if she can get me in sooner. He then brought up the subject of Mayo. He said he was in agreement and would back me up if I want to go. He said they may have seen 100 patients to his few & that they would rerun all the tests etc but they might have something better as far as a treatment regimen than he does. We told him we understood that there is no set treatment for any of us & that what works for one will not work for the next one. He said it's a lot different when you have a million people with something versus a hand full of us who have this disease. I must say I came out of there feeling fairly good considering I went there with Ted & we were going to tell him to take a hike. He took the time to answer our questions & double checked everything I've been going over for four months. Well that's it for now. Will be getting the Metho filled & I might wait till Monday to take it. Sure would hate to ruin Easter by not feeling well. thanks for all your concern. Luv ya, SusiecueDISCLAIMER!!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...
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