Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 Hi Group, It's interesting reading about Sed Rates not really being up when a flare is going on. According to my rheumy, he is going to have me take a sed rate test to determine if the amount of prednisone I'm on is working....guess I must inform him differently?! Also, last blood work done on rheumatoid factor- in my lab, normal was between 0 and 19. Mine was 55 on one, and 52 on the one taken 2 weeks later. When I asked rheumy what that meant, he said it just means there is an inflammatory problem going on....duh! But he wasn't concerned about it too much. Should I be? Then he tells me he has one other RP patient, a gentleman, and the poor guys' ears and nose is just 'literally being chewed up' by this terrible disease. His words. Now guys, I kind of think maybe that is happening because the rheumy might not be getting his medication right, but hate to judge, as I am new to this. Your opinions on this greatly appreciated, Thanks, Midge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2001 Report Share Posted September 5, 2001 Hi Group, It's interesting reading about Sed Rates not really being up when a flare is going on. According to my rheumy, he is going to have me take a sed rate test to determine if the amount of prednisone I'm on is working....guess I must inform him differently?! Also, last blood work done on rheumatoid factor- in my lab, normal was between 0 and 19. Mine was 55 on one, and 52 on the one taken 2 weeks later. When I asked rheumy what that meant, he said it just means there is an inflammatory problem going on....duh! But he wasn't concerned about it too much. Should I be? Then he tells me he has one other RP patient, a gentleman, and the poor guys' ears and nose is just 'literally being chewed up' by this terrible disease. His words. Now guys, I kind of think maybe that is happening because the rheumy might not be getting his medication right, but hate to judge, as I am new to this. Your opinions on this greatly appreciated, Thanks, Midge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Dear Midge, My pcp used to take sed rates but doesn't anymore. I don't think anybody in the group uses them as a factor. Also, finding a doctor is very difficult. I guess your best bet is to educate yourself. That is my new goal for the next month. Collect all my records, check for mistakes, then read, read, read. I print out all information that is pertinent to me and then review it. One of the frustrating parts of this disease is we all have the same symptoms, off and on, but no one treatment. Well, except for Prednisone. My doctor hits me with 40mg for a few days then down to 20mg for a week then 10mg for a week. Then he quits. Other people have been on as low as 4 mg for a long time. So again, I don't know what's right. My problems are more sinus infections, bronchitius, achy joints, fatigue. I wish we were all the same but sadly we're not. I wish you well....Sue Marth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Dear Midge, My pcp used to take sed rates but doesn't anymore. I don't think anybody in the group uses them as a factor. Also, finding a doctor is very difficult. I guess your best bet is to educate yourself. That is my new goal for the next month. Collect all my records, check for mistakes, then read, read, read. I print out all information that is pertinent to me and then review it. One of the frustrating parts of this disease is we all have the same symptoms, off and on, but no one treatment. Well, except for Prednisone. My doctor hits me with 40mg for a few days then down to 20mg for a week then 10mg for a week. Then he quits. Other people have been on as low as 4 mg for a long time. So again, I don't know what's right. My problems are more sinus infections, bronchitius, achy joints, fatigue. I wish we were all the same but sadly we're not. I wish you well....Sue Marth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 -Sue, I am also doing the weekly thing with the prednisone. Rheumy is having me taper down by 10 mgs a week until I stay at 10mgs...then he wants to put me on cyclosporin. I feel like a guinea pig.Today I went to the ENT who did my sinus surgery a few months ago and he won't be my dr. for RP as he has no experience in this disease at all. I do appreciate his honesty. Told me to keep in touch and he'd be glad to deal with anything relating to sinus, inner ear stuff etc. Nice man, but not the right ENT Dr. for me. Take care, Midge -- In Rpolychondritis@y..., grandm4@a... wrote: > Dear Midge, My pcp used to take sed rates but doesn't anymore. I don't think > anybody in the group uses them as a factor. > Also, finding a doctor is very difficult. I guess your best bet is to educate > yourself. That is my new goal for the next month. Collect all my records, > check for mistakes, then read, read, read. I print out all information that > is pertinent to me and then review it. > One of the frustrating parts of this disease is we all have the same > symptoms, off and on, but no one treatment. Well, except for Prednisone. My > doctor hits me with 40mg for a few days then down to 20mg for a week then > 10mg for a week. Then he quits. Other people have been on as low as 4 mg for > a long time. So again, I don't know what's right. My problems are more sinus > infections, bronchitius, achy joints, fatigue. > I wish we were all the same but sadly we're not. > I wish you well....Sue Marth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 -Sue, I am also doing the weekly thing with the prednisone. Rheumy is having me taper down by 10 mgs a week until I stay at 10mgs...then he wants to put me on cyclosporin. I feel like a guinea pig.Today I went to the ENT who did my sinus surgery a few months ago and he won't be my dr. for RP as he has no experience in this disease at all. I do appreciate his honesty. Told me to keep in touch and he'd be glad to deal with anything relating to sinus, inner ear stuff etc. Nice man, but not the right ENT Dr. for me. Take care, Midge -- In Rpolychondritis@y..., grandm4@a... wrote: > Dear Midge, My pcp used to take sed rates but doesn't anymore. I don't think > anybody in the group uses them as a factor. > Also, finding a doctor is very difficult. I guess your best bet is to educate > yourself. That is my new goal for the next month. Collect all my records, > check for mistakes, then read, read, read. I print out all information that > is pertinent to me and then review it. > One of the frustrating parts of this disease is we all have the same > symptoms, off and on, but no one treatment. Well, except for Prednisone. My > doctor hits me with 40mg for a few days then down to 20mg for a week then > 10mg for a week. Then he quits. Other people have been on as low as 4 mg for > a long time. So again, I don't know what's right. My problems are more sinus > infections, bronchitius, achy joints, fatigue. > I wish we were all the same but sadly we're not. > I wish you well....Sue Marth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 -Hi Sue, I had terrible sinus problems for years. When my ears started flaring I went to an ENT to see if he could figure out if the sinus infections had traveled to the ears-let me say that they got so bad at one point, they actually blistered! So he took one look up my nose and said, " First we have to do something about the sinuses " . He put me to sleep, cleaned out all diseased tissues that had been building up for many years, then straightened my septum (which turned out to be 'S' shaped). I had heard this Dr. was the best for sinus surgery-and he was for me. I had only slight bruising under the eyes. Only problem I had was when I got a secondary infection while healing-that was bad, but he quickly suctioned out the area, and gave me pain meds. I was already on antibiotics, so all went well. If the infection hadn't happened, this whole surgery would not have been 1/2 as bad as some of my 'regular' sinus infections. It has helped me so much. Unfortunately, the ENT didn't know anything or do anything for the RP. In fact, if you read one of my earlier posts today-he's no longer my ENT as he doesn't know anything about RP, and doesn't wish to treat me. He was a good surgeon though and I hope you will find one who does a good job when you have this procedure done. It has really helped me a lot and Im glad I had it done. Let me know if I can be of any more help to you. Take care, Midge -- In Rpolychondritis@y..., grandm4@a... wrote: > Hi Again Midge, could you please tell me about your sinus surgery. I think > that's next for me, was told its hell. Did it help with other infections? > Please share with me. Thanks...Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 -Hi Sue, I had terrible sinus problems for years. When my ears started flaring I went to an ENT to see if he could figure out if the sinus infections had traveled to the ears-let me say that they got so bad at one point, they actually blistered! So he took one look up my nose and said, " First we have to do something about the sinuses " . He put me to sleep, cleaned out all diseased tissues that had been building up for many years, then straightened my septum (which turned out to be 'S' shaped). I had heard this Dr. was the best for sinus surgery-and he was for me. I had only slight bruising under the eyes. Only problem I had was when I got a secondary infection while healing-that was bad, but he quickly suctioned out the area, and gave me pain meds. I was already on antibiotics, so all went well. If the infection hadn't happened, this whole surgery would not have been 1/2 as bad as some of my 'regular' sinus infections. It has helped me so much. Unfortunately, the ENT didn't know anything or do anything for the RP. In fact, if you read one of my earlier posts today-he's no longer my ENT as he doesn't know anything about RP, and doesn't wish to treat me. He was a good surgeon though and I hope you will find one who does a good job when you have this procedure done. It has really helped me a lot and Im glad I had it done. Let me know if I can be of any more help to you. Take care, Midge -- In Rpolychondritis@y..., grandm4@a... wrote: > Hi Again Midge, could you please tell me about your sinus surgery. I think > that's next for me, was told its hell. Did it help with other infections? > Please share with me. Thanks...Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 In a message dated 09/06/2001 2:09:57 PM Central Daylight Time, grandm4@... writes: << I wish we were all the same but sadly we're not. >> \ Ssue, if we were all the same, it would be soooooooooo boring! Vive La Difference! But it would be nice if we could at least have the same symptoms, it might help the drs to treat us. One thing I found out in the past two weeks is that STRESS definitely affects my RP! When I get super stressed, not only do my ulcers start tap dancing, but my ears start hurting (fortunately didn't go into a flare, though, so that's a bonus!) But others may not be affected by stress. It is a truly weird disease! No wonder the drs have so much trouble dealing with us, we can't even keep the SAME symptoms going for a while before something else pops up! At least we keep them challenged! Love, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 In a message dated 09/06/2001 2:09:57 PM Central Daylight Time, grandm4@... writes: << I wish we were all the same but sadly we're not. >> \ Ssue, if we were all the same, it would be soooooooooo boring! Vive La Difference! But it would be nice if we could at least have the same symptoms, it might help the drs to treat us. One thing I found out in the past two weeks is that STRESS definitely affects my RP! When I get super stressed, not only do my ulcers start tap dancing, but my ears start hurting (fortunately didn't go into a flare, though, so that's a bonus!) But others may not be affected by stress. It is a truly weird disease! No wonder the drs have so much trouble dealing with us, we can't even keep the SAME symptoms going for a while before something else pops up! At least we keep them challenged! Love, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 In a message dated 9/5/01 9:10:06 PM Pacific Daylight Time, midgeirish@... writes: << just 'literally being chewed up' by this terrible disease. His words. Now guys, I kind of think maybe that is happening because the rheumy might not be getting his medication right, but hate to judge, as I am new to this. >> Midge, LOL sounds to me like you are right. If RP is under control with the right meds, I don't think there should be damage still being done. If our meds are working we should have little or no flares is my understanding... If I find myself with just the start of a flare I increase my meds per my drs orders.. Knock on wood, i haven't had a flare in a few months and don't plan on having another. LOl hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 In a message dated 9/5/01 9:10:06 PM Pacific Daylight Time, midgeirish@... writes: << just 'literally being chewed up' by this terrible disease. His words. Now guys, I kind of think maybe that is happening because the rheumy might not be getting his medication right, but hate to judge, as I am new to this. >> Midge, LOL sounds to me like you are right. If RP is under control with the right meds, I don't think there should be damage still being done. If our meds are working we should have little or no flares is my understanding... If I find myself with just the start of a flare I increase my meds per my drs orders.. Knock on wood, i haven't had a flare in a few months and don't plan on having another. LOl hugs Quote Link to comment Share on other sites More sharing options...
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