Guest guest Posted July 10, 2001 Report Share Posted July 10, 2001 when and after the poly is done attacking the ears as in my case, does it move on and destroy the nose, the heart valve etc.?? i never thaught about this until i saw lucys post.this disease is very weird. did this happen to anyone else?? thanks for the help. God Bless you all, and i always say my prayers for the group. Chuck Heath Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2001 Report Share Posted July 10, 2001 Thanks Chuck, your prayers are most greatly appreciated. Glad to hear you are maintaining OK on the pred. Take care. This is such a great group of people with the RP group. Marilyn when and after the poly is done attacking the ears as in my case, > does it move on and destroy the nose, the heart valve etc.?? > i never thaught about this until i saw lucys post.this disease is > very weird. did this happen to anyone else?? thanks for the help. > God Bless you all, and i always say my prayers for the group. > Chuck Heath Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2001 Report Share Posted July 10, 2001 Chuck, Mine started in the ribs and joints then moved on to my ears, nose and throat in that order. Also developed Vascullitis about 6 months ago. Sandy > when and after the poly is done attacking the ears as in my case, > does it move on and destroy the nose, the heart valve etc.?? > i never thaught about this until i saw lucys post.this disease is > very weird. did this happen to anyone else?? thanks for the help. > God Bless you all, and i always say my prayers for the group. > Chuck Heath > > > 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 July 10, 2001 Report Share Posted July 10, 2001 what is vascullitis??? > Chuck, > Mine started in the ribs and joints then moved on to my ears, nose and > throat in that order. Also developed Vascullitis about 6 months ago. > > Sandy > > > when and after the poly is done attacking the ears as in my case, > > does it move on and destroy the nose, the heart valve etc.?? > > i never thaught about this until i saw lucys post.this disease is > > very weird. did this happen to anyone else?? thanks for the help. > > God Bless you all, and i always say my prayers for the group. > > Chuck Heath > > > > > > 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 July 10, 2001 Report Share Posted July 10, 2001 Chuck, RP attacks whatever and whenever it wants as far as the cart goes. My ears are not floppy and my nose isn't caved in yet. My RP goes from one place to the other. One time the ears, then the nose, then the ribs, then another. I don't know whether this help or not. Everyone is different and I only have RP so far so I don't know how it has done with all the others. Like you say we are all different so it is different for each of us. I have had it for over 8 years and so far it is only attacking the exterior cart. thus far. (knock on wood) Take care and don't let it worry you just take it a day at a time. Lots of Love Glenda i have a question also when and after the poly is done attacking the ears as in my case, does it move on and destroy the nose, the heart valve etc.?? i never thaught about this until i saw lucys post.this disease is very weird. did this happen to anyone else?? thanks for the help.God Bless you all, and i always say my prayers for the group. Chuck HeathDISCLAIMER!!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 July 10, 2001 Report Share Posted July 10, 2001 Chuck, Vasculitis is an inflammation of the blood vessels. It involves the immune system. A wonderful source of info can be found at ... http://vasculitis.med.jhu.edu/ Sandy > what is vascullitis??? > > Chuck, > > Mine started in the ribs and joints then moved on to my ears, nose > and > > throat in that order. Also developed Vascullitis about 6 months ago. > > > > Sandy > > > > > when and after the poly is done attacking the ears as in my case, > > > does it move on and destroy the nose, the heart valve etc.?? > > > i never thaught about this until i saw lucys post.this disease is > > > very weird. did this happen to anyone else?? thanks for the help. > > > God Bless you all, and i always say my prayers for the group. > > > Chuck Heath > > > > > > > > > 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 July 11, 2001 Report Share Posted July 11, 2001 --- cistn@... wrote: > when and after the poly is done attacking the ears > as in my case, > does it move on and destroy the nose, the heart > valve etc.?? > i never thaught about this until i saw lucys > post.this disease is > very weird. did this happen to anyone else?? thanks > for the help. > God Bless you all, and i always say my prayers for > the group. > Chuck > Heath > > Hello Chuck,glad to " meet " you. From my reading on rp it is not automatic that it attacks everything. Most people have ear and nose problems, but not everyone has heart valve involvement or trachea, etc. Also once you are on medication it slows down the progression of the the disease. Personally, for the last three years I have been on methotrexate and have been MUCH better than in the approx 10 years previously. I have had less pain, less hoarseness flares have been milder, have not had continual infections. I have recently started plaquenil and am now down to 3mg of pred (Lowest for one year, and I am not flaring - ears got a bit red, and end of nose got az bit sore but I don't count that!) I work out most days, and I am 58 years old so I am v. pleased. When I was dx I thought it was all downhill, but it is not, thank the Lord. Good luck with your pred reduction!! My prayers are also with everyone - take care, Love Liz __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2001 Report Share Posted July 12, 2001 In a message dated 7/10/01 4:03:18 PM Pacific Daylight Time, biglou5685@... writes: << when and after the poly is done attacking the ears as in my case, > does it move on and destroy the nose, the heart valve etc.?? > i never thaught about this until i saw lucys post.this disease is > very weird. did this happen to anyone else?? thanks for the help. > God Bless you all, and i always say my prayers for the group. > Chuck Heath > >> Chuck... Mine started with my left ear then moved to the right ear, then the ribs and then the nose. I have mitral valve prolapse and Aortic Insuffieciency. They think the AI is RP related. Have to have echocardiograms every 3-6 months. I have had this for 5 years...so who know.....maybe it started there....YOu are right it is a very weird disease...Go figure. LOL I am doing really good now (knock on wood.) I also keep you and everyone else in my prayers daily...thanks for yours...They are appreciated. We are a very strong group and have lots of prayers going out.....AND they are answered. Keep the posts coming....Love to read them. C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2001 Report Share Posted July 12, 2001 In a message dated 7/10/01 11:51:41 PM Pacific Daylight Time, lizwizz2000@... writes: << From my reading on rp it is not automatic that it attacks everything. Most people have ear and nose problems, but not everyone has heart valve involvement or trachea, etc. >> Lizz, I agree with you. Each one of us is different and the sooner it is stopped the less problems I think we have. I too have been fortunate. My ears aren't floppy and since I have been on a cortisone nasal spray, my hoarseness and nose flares are almost nothing... or at least nothing I would count as a flare. My ribs have been good. The only thing I've had recently is my left ear. The bugger that started this all, and it has been minimal. Chuck, where do you flare and what is the extent of your flaring. I'm sorry you probably have already told this, but between my brain fog and not getting all my mail.. I'm lost. LOL Quote Link to comment Share on other sites More sharing options...
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