Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 In a message dated 3/1/01 7:24:25 PM US Eastern Standard Time, Rpolychondritis writes: Dear Judy, I have had lots of problems with not being able to ear too. Was treated for years as if it were infections, but recently they decided that its all connected to the RP. I went to an ENT yesterday, luckily (or unluckily) for me they were not flaring at the time. but he did tell me that when they get clogged and draining to try a mixture of rubbing alcohol and white vinager. It restores the ph in the ears. I haven't had to try it yet, but thought I would pass on the info. Good Luck, my prayers are with you, hope all goes well at your ENT. Rhonda Message: 21 Date: Thu, 1 Mar 2001 18:01:55 EST From: JOstry93@... Subject: Re: Judy O , I'll try anything for my ear - it's making me crazy not to hear anything clearly. My MD thinks it could be related to the RP (I sincerly hope not). I have to see an ENT tomorrow, I actually have been hoping that it would miraculously clear up before then, but your point is very well taken, if this is part of the RP,the sooner it is treated the better! I know that I am entitled to the benefits, I guess I feel like one of those people parked in handicapped parking with no obvious handicap. Just because you can't see it, doesn't mean it isn't there. Thanks, I think I'm jusst having a bad daym but tomorrow will be better. LOL, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 In a message dated 3/1/01 7:24:25 PM US Eastern Standard Time, Rpolychondritis writes: Dear Judy, I have had lots of problems with not being able to ear too. Was treated for years as if it were infections, but recently they decided that its all connected to the RP. I went to an ENT yesterday, luckily (or unluckily) for me they were not flaring at the time. but he did tell me that when they get clogged and draining to try a mixture of rubbing alcohol and white vinager. It restores the ph in the ears. I haven't had to try it yet, but thought I would pass on the info. Good Luck, my prayers are with you, hope all goes well at your ENT. Rhonda Message: 21 Date: Thu, 1 Mar 2001 18:01:55 EST From: JOstry93@... Subject: Re: Judy O , I'll try anything for my ear - it's making me crazy not to hear anything clearly. My MD thinks it could be related to the RP (I sincerly hope not). I have to see an ENT tomorrow, I actually have been hoping that it would miraculously clear up before then, but your point is very well taken, if this is part of the RP,the sooner it is treated the better! I know that I am entitled to the benefits, I guess I feel like one of those people parked in handicapped parking with no obvious handicap. Just because you can't see it, doesn't mean it isn't there. Thanks, I think I'm jusst having a bad daym but tomorrow will be better. LOL, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 In a message dated 3/1/01 7:24:25 PM US Eastern Standard Time, Rpolychondritis writes: Dear Judy, I have had lots of problems with not being able to ear too. Was treated for years as if it were infections, but recently they decided that its all connected to the RP. I went to an ENT yesterday, luckily (or unluckily) for me they were not flaring at the time. but he did tell me that when they get clogged and draining to try a mixture of rubbing alcohol and white vinager. It restores the ph in the ears. I haven't had to try it yet, but thought I would pass on the info. Good Luck, my prayers are with you, hope all goes well at your ENT. Rhonda Message: 21 Date: Thu, 1 Mar 2001 18:01:55 EST From: JOstry93@... Subject: Re: Judy O , I'll try anything for my ear - it's making me crazy not to hear anything clearly. My MD thinks it could be related to the RP (I sincerly hope not). I have to see an ENT tomorrow, I actually have been hoping that it would miraculously clear up before then, but your point is very well taken, if this is part of the RP,the sooner it is treated the better! I know that I am entitled to the benefits, I guess I feel like one of those people parked in handicapped parking with no obvious handicap. Just because you can't see it, doesn't mean it isn't there. Thanks, I think I'm jusst having a bad daym but tomorrow will be better. LOL, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 Rhonda, et al. I just got back from the ENT. I have mild hearing loss in my left ear - since I haven't had an audiogram since I was a kid, it's hard to determine just how much I've lost. He agrees with my PCP, that this could be from the RP (I thought we kicked that sucker outta here!!!) I'm back on Pred 60 mg (Lookout woodwork!) dam I hate that stuff, but if it restores my hearing, I'll take it! Anyway back to the md in 2 weeks to my original ENT, so I know I will be in good hands (just like Allstate) I really want to go on to Chat tonite, but since I can't hear clearly, I'm not sure that's such a good idea. What do you think? Anyway, I feel better, they did a hearing test and confirmed that my right ear is profoundly deaf (we already knew that). The only good thing he had to say was that since my hearing is slightly improved over yesterday, maybe the Pred will jump start my system and give my hearing back! It's so odd the things we take for granted. I have been blind, but now I see (that's not Amazing Grace), so I have NEVER taken my sight for granted. But my hearing.., I've always accepted that my right ear was useless and that didn't bother me because the hearing in my left ear was so accute, my hearing seemed perfectly normal - it was just on one side of my head! But when I woke up yesterday and couldn't hear, I panicked. I am so grateful for all the gifts I have, Sight, sound, taste (too much), smell, and touch. We all know what it means to see, hear, and touch our kids and.or grandkids. The idea of silence was terrifying. Something the doctor said about auto-immune diseases was unsettleing - he said that these diseases can go right thru our bodies (tell us something we didn't know) one right after another, doing their damage as the pass thru. That was NOT something I particularly wanted to know. Well it's done, and I'm OK (thank GOD). I thank all of you for being there while I panicked. I truly don't know what I would have done without you all. Thanks, Love, and prayers. Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Sharon, when my ears flare, it starts slow. Feels like I've slept on them wrong. Sore to touch and then the redness comes. Then they are sooo painful and hot and swollen. Don't let them get like this now. When they feel like I've slept on them wrong, I up my pred. LOL I know it is different for everyone, this is just what happened to me. Hug claudia C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 10:08:34 AM Central Standard Time, sisterslk@... writes: << Can anyone describe to me what it feels like when your ears first begin to flare? Since I have cut my prednisone to 2 mg per day my ears have been giving me fits. This morning they are just mildly red and feel a bit warm. They don't look swollen to me, >> Sharon, Please remember your " ears " do not need to get swollen to be flared! My ears were the worst when I was ill. The feeling to me would be a a feel of " frost bite " as you may. Warm and Red with some outer pain. As for the inner ear believe me you will know because it is the most intense pain you will ever experience. I find for the " Outer " ear, higher dose of Pred works very well, as for the inner Pred never worked for me. I know have vent tubes in the inner ears and seem to be doing better. Ear pain in my opinion has to be some of the worst pain on earth. Let your Dr know your " Ears " are inflamed soon or it can get out of control. P Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 10:20:02 AM Central Standard Time, RCColloran@... writes: << Sharon, when my ears flare, it starts slow. Feels like I've slept on them wrong. Sore to touch and then the redness comes. Then they are sooo painful and hot and swollen. Don't let them get like this now. When they feel like I've slept on them wrong, I up my pred. LOL I know it is different for everyone, this is just what happened to me. Hug claudia C >> LOL , you took the words right out my mouth! Your description was a lot better then mine! Love, P. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 8:21:16 AM Pacific Standard Time, Idigflower@... writes: << I know have vent tubes in the inner ears and seem to be doing better. >> , I have a buning pain in my inner ears most of the time. Feels like a hot poker is down them. What sort of symptoms did you have for inner ear problems. The ENT always says they are fine. I disagree!! C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 8:25:49 AM Pacific Standard Time, Idigflower@... writes: << LOL , you took the words right out my mouth! >> , seems like we all do this alot lately. LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 8:25:49 AM Pacific Standard Time, Idigflower@... writes: << LOL , you took the words right out my mouth! >> , seems like we all do this alot lately. LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 8:25:49 AM Pacific Standard Time, Idigflower@... writes: << LOL , you took the words right out my mouth! >> , seems like we all do this alot lately. LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 10:26:14 AM Central Standard Time, RCColloran@... writes: << , I have a buning pain in my inner ears most of the time. Feels like a hot poker is down them. What sort of symptoms did you have for inner ear problems. The ENT always says they are fine. I disagree!! >> , just even having to think what I have had to go through with my " inner " ears makes me want to cry, still till this day. My ears were the " worst " thing during this whole RP disorder. It is a very long story I will share with you at the Sept Meeting. Short story: " 5 " yes " 5 " ENT'S told me " nothing wrong " I went crazy! to the point my husband had to hide all the stake knifes in the house because I threatened to poke a hole in my ears thinking that would relief the pain and pressure, he knew I was not kidding either. 5 months latter I was completely bed ridden and had the DX of RP, even though I had the DX I still suffered in severe ear pain, and have called some ENT's such bad names they refused to see me again. It was not till I became 100% " Addicted to pain pills to relief the ear pain did they finally agree to do surgery in my ears to see what was wrong, they found out I had (don't know if I got this 100% correct), but they found I had " Hyper " inflated ear drums, meaning even though no fluid the pressure was sever enough to warrant Vent Tubes to release pressure. After the damn surgery I wanted to put a hit on all the darn ENT's because I received 100% relief right after the surgery after 1 year of wanting to mutilate my inner ears with knifes. If someone would ask me what was the " Worst " thing about me having the illness I would have to say inner ear pain and stupid DR's! Now I know why " Baby's " cry so bad when they have an earache! Poor things, it hurts like hell! P Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Sharon It sounds like you are trying to have a flare. Aren't you on the Imuran? This maybe all you get with the flares while you are on the Imuran. I am at home now give me a call if you like we can talk! Little one has went to school and I am home alone!LOL LOts of Love Glenda --- Sharon sisterslk@...> wrote: > Can anyone describe to me what it feels like when > your ears first > begin to flare? Since I have cut my prednisone to 2 > mg per day my > ears have been giving me fits. This morning they > are just mildly red > and feel a bit warm. They don't look swollen to me, > but they feel > swollen both inside and out. I don't remember how > they felt as my > first episode of this came on suddenly one night as > I was sleeping. > I don't remember if there were days like this > leading up to the big > flare. HELP! I see my doctor tomorrow, so I'm not > really worried- > just wondering if this is how it starts. Thanks, > Sharon > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Sharon, I don't think I will ever forget! First I got a third degree sunburn so my ears werre already swolen, blistered and bleeding. But the sunburn healed and my ears didn't ! I couldn't even put my head on a pillow incase the pillow case touched them. If I forgot and pulled a shirt off over my head, I screamed and cried for an hour. It was God awful pain. I was on Pred 60 mgs a day for two weeks then they started to cut it back. Got only as low as 30 mgs when it would start all over again. Then I got Iritis (an inflamation of the eyeball itself). I was so miserable, and I spent my days on the phone for work. Had to use the speaker phone, I could not let ANYTHING touch my ears. I can't tell you the joy of the biopsy when they cut tissue out of my ear! By that time, all the docs had decided it was RP, took Mayo less than a week to confirm. Went on Metho which started to help within a month. Now I still get very hot, very red ears, but the pain is minimal compared to what it was. Still get sick from the Metho, but it's preferable to the pain. As far as anyone knows, that is the only major flare I had - lasted 2 -3 months. Now I still have pain and heat waves in my ears, but nothing like what it was. I sincerely hope you don't flare again. I wouldn't wish this on my worst enemy!....Well..........No, no, I wouldn't - really! LOLove (cause God know it wasn't any laughs) Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Of course they are fine - they are not HIS ears now, are they?? I just love it when they tell you that! Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 03/19/2001 11:27:43 AM Central Standard Time, Idigflower@... writes: << >> , ssstrange, but I had an incident recently that while I had no ear pain and the ear canals were clear (no wax either), but I lost my hearing. The Dr and the ENT couldn't find anything wrong, but I couldn't hear anything. They put me on Pred and my hearing came back. But it sure was strange and I sure don't feel real secure about my hearing. Sure is a weird disease! Love, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 4:05:44 PM Central Standard Time, JOstry93@... writes: << The Dr and the ENT couldn't find anything wrong, but I couldn't hear anything. They put me on Pred and my hearing came back. But it sure was strange and I sure don't feel real secure about my hearing. Sure is a weird disease! Love, Judy >> Judy, I have an " excellent " ENT in Park Ridge if you want his name! and also he is very sensitive with RP people he is the one who finally gave me the vent tubes. He is a young, smart man! KP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 4:08:22 PM Central Standard Time, JOstry93@... writes: << Of course they are fine - they are not HIS ears now, are they?? >> Judy, LOL!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 9:27:48 AM Pacific Standard Time, Idigflower@... writes: << hey found out I had (don't know if I got this 100% correct), but they found I had " Hyper " inflated ear drums, meaning even though no fluid the pressure was sever enough to warrant Vent Tubes to release pressure. >> , do you still have the tubes in your ears?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 9:27:48 AM Pacific Standard Time, Idigflower@... writes: << hey found out I had (don't know if I got this 100% correct), but they found I had " Hyper " inflated ear drums, meaning even though no fluid the pressure was sever enough to warrant Vent Tubes to release pressure. >> , do you still have the tubes in your ears?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 --- Sharon sisterslk@...> wrote: > Can anyone describe to me what it feels like when > your ears first > begin to flare? Since I have cut my prednisone to 2 > mg per day my > ears have been giving me fits. This morning they > are just mildly red > and feel a bit warm. They don't look swollen to me, > but they feel > swollen both inside and out. I don't remember how > they felt as my > first episode of this came on suddenly one night as > I was sleeping. > I don't remember if there were days like this > leading up to the big > flare. HELP! I see my doctor tomorrow, so I'm not > really worried- > just wondering if this is how it starts. Thanks, > Sharon > > Sounds pretty much like it to me Sharon, mine didn't swell straight away, but they were bright red and very painful, THEN they started swelling!!! Love Liz __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 In a message dated 3/19/01 11:29:38 PM Central Standard Time, RCColloran@... writes: << , do you still have the tubes in your ears?? >> Yes indeed I do still have them they were put in " last Feb " in 2000, they were due to fall out by now but they have not as of yet. As soon as they do I will fly back to Chicago and have them put back in asap! I have been having minor inner ear pain the last few days so I wounder if they just fell out. I see my Rheumy on the 28th so I will have her check. LOVE, kp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Sharon, I get the same thing everytime my pred is dropped. My ears get red, hot and sometimes a little painful. For me it stops after about 2 or 3 days when my body adjusts to the pred drop. You see when you're on pred your body produces less of it's own natural steroids and when the dose is dropped your body has to kick in and adjust. If the ear ting continues for longer, see you doc. Hope this helps. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Sharon, I get the same thing everytime my pred is dropped. My ears get red, hot and sometimes a little painful. For me it stops after about 2 or 3 days when my body adjusts to the pred drop. You see when you're on pred your body produces less of it's own natural steroids and when the dose is dropped your body has to kick in and adjust. If the ear ting continues for longer, see you doc. Hope this helps. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 My ENT is Deitch, he's in Schaumburg, he's the one who did the biopsy on my ear, so he know's how nasty I can get after the anesthetic wears off!! I was not wishing nice things for him! He just laughed at me. Love, Judy Quote Link to comment Share on other sites More sharing options...
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