Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Good morning and thanks to all who are helping me get a better understanding of what is going on with me and the RP. As you could probably tell from yesterday, I don't have the greatest confidence in my Rheumy so the questions he should be answering for me I will need to look to you, through your experience, for. How were you diagnosed? Did any of you require a biopsy to attain the diagnosis? How long do your flares last? Mine seem to last anywhere from 2 hours to a week. Do you have several 'small' ones or is it one long continuous one? My ears often turn red for a shorter period but every day. I live in New Mexico. Do you know of anyone else from NM with RP or of any drs who in NM who work with RP? Thanks so much everyone and have a great Sunday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 When I have a flare, which is very unpredictable, as is the duration of the flare. if I take the pred. right away sometimes i can stop the flare in two days thats taking 40 mlg, twice a day. other times it lingers for mare than a week and intensifies. if i do nothing because i am out of medication or away. it will get really horrible, going from one ear to the other, as it goes from one to the other, the ear that started flaring will subside some,but it won't just go away until i take the Pred. afterwards, my calfs feel like they have lead in them and my joints hurt like crazy even just to walk is sometimes a task.....but hell i don't let get me down I just wait for the next time and deal with it as i did the last...........Chuck Heath Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 In a message dated 8/12/01 7:48:27 AM Pacific Daylight Time, ramius@... writes: << How were you diagnosed? Did any of you require a biopsy to attain the diagnosis? >> I had my first flare in '98. Thought I had slept on my ear wrong... it just kept getting redder and bigger and oh the PAIN!! Finally went to the dr.. was treated for a bite... put on antibiotics... Went back almost daily for antibiotic injections... Finally cleared up after 2 weeks... Had my second flare almost a year later.. this time I didn't wait.. Thought it was cellulitus this time.. again on antibiotics... dailyl injections... after a week couldn't stand it any longer and went to an ENT... He immediately said RP. He know how to diagnose it but didn't know how to treat it. LOL Told me to go home and look on the computer... He put me on 80mg of pred.. Well I didn't have a computer then and started reading and scared the crap out of me.. found a rheumy and he put me on vioxx... I continued to flare and he added pred...then metho.... still was upping my pred... By this time it had gone to my other ear, nose and ribs... I think some throat involvement too... Changed rheumys a few times... Took metho a year and then switched to Imuran... That made me sick.. so now am on just Pred..(haven't been off since the first dose) Two months ago, I started on Biaxin and haven't had a flare since and am down next week to 9mg..YEAH... don't know if it is the biaxin or just the rp behaving itself, but I'm not complaining... I have added co Q-10 and acidophilus to my many pills and have never felt better... I am keeping my fingers crossed that the RP will stay right where it is.....quiet... Hoping to totally get off the pred, but will settle for the smallest dose possible. I have real good feelings that I am going to get this under control. Just arm yourself with alot of information and get it to your dr... I am lucky to have one now who is willing to work with me...Took a long time, but I think I have him trained. LOL Keep us posted and please keep asking questions.. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 In a message dated 8/12/01 1:13:25 PM Pacific Daylight Time, susuw@... writes: << Did any of you require a biopsy to attain the diagnosis? >> I did have a biopsy... They took me off the pred and let my ear flare real bad to do it.. The results were inconclusive... so don't know if it is really needed or not.. It showed Inflamation. LOL I could have told them that.... My ears at times feel a little sore like a flare is coming on.. but it never gets red and goes away real fast.. I don't do anything for these. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 MY PCP dx'd me. I came in with a very red, inflamed and sore ear and she knew right away what it was. She ordered a sed rate and gave me 60 mgs of Pred to take and to comeback in 2 weeks. It did bring the flare under control. I know a few people in this group that have had the biopsy done. Some docs don't think it is a way to dx RP, some swear by it. I guess it depends on the doctor. I personally would not put myself through a biopsy when my ear is inflamed. Just the thoughts of it makes me literally sick to my stomach. I have the mini flares too. I will be driving and all of a sudden I feel my ears get very hot and turn very red. Sore too. It will last a few hours to a few days. I don't do anything when this happens, except take my meds as prescribed. I really feel you should be on a medicine/medicines to control these flares. You shouldn't have to wait for a major flare or wait till damage has been done for your doctor to decide if it's RP or not. Do you have more Rheumy's in your area that you can check out? Ask the nurse when you make the appointment to ask the doctor if he has had experience with RP before. If not, take him the latest articles on RP (I have some if you don't), and ask him to take the time while you are there to read it. I live in VA, so I can't help you there, but I really don't think you should wait much longer for a dx or treatment. Hope this helps some. W >>>>>>>>>>>>>>>>>>>>>>>>>> How were you diagnosed? Did any of you require a biopsy to attain the diagnosis?How long do your flares last? Mine seem to last anywhere from 2 hours to a week. Do you have several 'small' ones or is it one long continuous one? My ears often turn red for a shorter period but every day.I live in New Mexico. Do you know of anyone else from NM with RP or of any drs who in NM who work with RP? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 --- ramius@... wrote: > Good morning and thanks to all who are helping me > get a better > understanding of what is going on with me and the > RP. As you could > probably tell from yesterday, I don't have the > greatest confidence in > my Rheumy so the questions he should be answering > for me I will need > to look to you, through your experience, for. > > How were you diagnosed? Did any of you require a > biopsy to attain the > diagnosis? > > How long do your flares last? Mine seem to last > anywhere from 2 hours > to a week. > > Do you have several 'small' ones or is it one long > continuous one? My > ears often turn red for a shorter period but every > day. > > I live in New Mexico. Do you know of anyone else > from NM with RP or > of any drs who in NM who work with RP? > > Thanks so much everyone and have a great Sunday. > > Hello, I'm sorry I don't know your name yet! I was initially diagnosed by an ENT in Saudi Arabia, who I consulted when I was having a flare, then I went to a rheumy in Los Angeles also during a flare, severe ear pain also red and swollen; and breathing difficulties. He did blood tests while I was having a flare, and my sed rate was very high so he agreed with the previous dx, he also x-rayed my throat hands and feet, and said there was slight narrowing of my trachea and some damage to my finger and feet joints. He said he did not have to do a biopsy as I had several of the signs of rp. (I have forgotten what they were!!!) I hope this help a bit. BTW since I have been on treatment I have been much better. Hope it all starts coming together for you. It is very scarey at the beginning, but knowledge is power, so keep asking questions!! Love Liz __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2001 Report Share Posted August 14, 2001 --- cistn@... wrote: > When I have a flare, which is very unpredictable, as > is the duration > of the flare. if I take the pred. right away > sometimes i can stop the > flare in two days thats taking 40 mlg, twice a day. > other times it > lingers for mare than a week and intensifies. if i > do nothing because > i am out of medication or away. it will get really > horrible, going > from one ear to the other, as it goes from one to > the other, the ear > that started flaring will subside some,but it won't > just go away > until i take the Pred. afterwards, my calfs feel > like they have lead > in them and my joints hurt like crazy even just to > walk is sometimes > a task.....but hell i don't let get me down I just > wait for the next > time and deal with it as i did the > last...........Chuck Heath Chuck, My name is Rita and I live in Montgomery AL. All your symptoms are exactly what I experience when I flare. I started in late December with left ear and the first of February in the right ear. When flaring I experience flue symptoms (chills, no fever, body aches from head to toe, and extreme pain in my legs). To put it simply, I am in bed for four days. I was diagnosed in June and have been on Pred since. I know without the Pred I would be having flares in my ears because about once a week my ears itch and burn for about 48 hours. Good luck! Rita > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2001 Report Share Posted August 14, 2001 > Good morning and thanks to all who are helping me get a better > understanding of what is going on with me and the RP. As you could > probably tell from yesterday, I don't have the greatest confidence in > my Rheumy so the questions he should be answering for me I will need > to look to you, through your experience, for. > > How were you diagnosed? Did any of you require a biopsy to attain the > diagnosis? > > How long do your flares last? Mine seem to last anywhere from 2 hours > to a week. > > Do you have several 'small' ones or is it one long continuous one? My > ears often turn red for a shorter period but every day. > > I live in New Mexico. Do you know of anyone else from NM with RP or > of any drs who in NM who work with RP? > > Thanks so much everyone and have a great Sunday. Hi, I live in Albuquerque, just moved here about 2 yrs ago. Where abouts in New Mexico are you? I am female, 30 yrs old, married, no kids, 4 cats and 2 dogs(my babies). I feel terrible you have rp, but when I read your post was so excited there is someone near me with rp. I know that sounds crazy, but when you are first diagnosed you feel so alone, and I would explain to friends, and they didn't understand. When I first came to this group, I was so down, just so down. I now look forward to reading the posts, as I am getting a better understanding, and everyone here is so great. I started having symptoms at 13, but grew up in Bermuda, so they didn't know what was going on. I used to get flares that lasted for 4 months and would require a hospital stay. This usually would happen on average about every 2 yrs, but only in my nose. Since moving to Alb., though, I seem to be one continous flare. When I first moved here, I spent the first 4 months or so in bed, with the eye inflammation (my first), this is when I lost some sight. Then I got the ear, and was diagnosed about 6 months ago, but I wasn't really in a flare at that point, as I on 60mg of prednisone (for an eye flare),my symptoms were under control. My Rheumy did say the next time my ear flares really bad that they will do a biopsy, but I am allergic to pain! LOL! so I don't know if I will let them do it, and the outside of my ear has this weird little bump now. If you want to email me, feel free, it is Jasidan@.... have a great day le Quote Link to comment Share on other sites More sharing options...
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