Guest guest Posted March 2, 2002 Report Share Posted March 2, 2002 Hi there: I still haven't been formally diagnosed with RP. Since Jan./02 I've been on Prednisone 50mg/day for 7 day stints, (then off till throat, ears, joints, whatever swell again), 4 times!! This last time (I took last Prednisone Sun. Feb. 24/02)I've been very ill wvery day since I stopped the medicine. Mon. & Tues. I had no range of motion in my R arm, couldn't even lift it enough to brush my hair. By Wed. my ear started to redden, swell again, & the usual discomfort. By Thursday the lump is back in my throat, & my breathing is a bit laboured, (but nothing like when they took me into Emerg. & the ENT specialist had to put the tube in). Then yesterday something brand new started, and I had a bit of a lump behind my R knee, & it felt warm & turned quite red. By last night it had spread up into the back of mu thigh, & is now spreading around to the front of my leg. I didn't sleep very well last night, & I woke with quite a headache this morning that doesn't seem to be going away. My eyesight isn't good again today, but that has happened before, & I know it will go away. What I don't know is if I should drive into the hospital. My family Dr. is away until next week. I have an appointment to see him Thursday morning. I also see the Respiratologist Tuesday morning. (He did PFT on me at the hospital a few weeks back & I'm going to learn the results.) Thursday morning (before I see my family Dr.), I have an appt. to see a Dermatologist, who saw me last July, (when both ears first became red & swollen), & who suggested RP, to my Dr., but said my blood work came back neg. What'd ya think? Do you think I need to call them or just try and ride this out. I know that my auto immune isn't going to be fighting to good, but I've always been the type of person to try and just ride sickness out. Now I'm not too sure I should even attempt this. Anyway, as soon as I'm feeling a little better I'll try and fill you all in about me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2002 Report Share Posted March 2, 2002 Hi birdiea! I am on 5 mg pred. every day, and that's good for me. It's different from person to person, so you have to try what's good for you. In the start, one year ago, i was on Imurel, 50 mg/day too. But my liver did not like it, so i had to stop taking the Imurel. Just now i am fine and live a normal life. Greetings from Norway Sissel Should I go to Emerg? > Hi there: > I still haven't been formally diagnosed with RP. Since Jan./02 I've > been on Prednisone 50mg/day for 7 day stints, (then off till throat, > ears, joints, whatever swell again), 4 times!! > This last time (I took last Prednisone Sun. Feb. 24/02)I've been very > ill wvery day since I stopped the medicine. Mon. & Tues. I had no > range of motion in my R arm, couldn't even lift it enough to brush my > hair. By Wed. my ear started to redden, swell again, & the usual > discomfort. By Thursday the lump is back in my throat, & my breathing > is a bit laboured, (but nothing like when they took me into Emerg. & > the ENT specialist had to put the tube in). Then yesterday something > brand new started, and I had a bit of a lump behind my R knee, & it > felt warm & turned quite red. By last night it had spread up into > the back of mu thigh, & is now spreading around to the front of my > leg. I didn't sleep very well last night, & I woke with quite a > headache this morning that doesn't seem to be going away. My > eyesight isn't good again today, but that has happened before, & I > know it will go away. What I don't know is if I should drive into > the hospital. My family Dr. is away until next week. I have an > appointment to see him Thursday morning. I also see the > Respiratologist Tuesday morning. (He did PFT on me at the hospital a > few weeks back & I'm going to learn the results.) Thursday morning > (before I see my family Dr.), I have an appt. to see a Dermatologist, > who saw me last July, (when both ears first became red & swollen), & > who suggested RP, to my Dr., but said my blood work came back neg. > > What'd ya think? Do you think I need to call them or just try and > ride this out. I know that my auto immune isn't going to be fighting > to good, but I've always been the type of person to try and just > ride sickness out. Now I'm not too sure I should even attempt this. > > Anyway, as soon as I'm feeling a little better I'll try and fill you > all in about me. > > > > 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 3, 2002 Report Share Posted March 3, 2002 Hi again! I am agree with ; Mine bloodtests are very low. The Dr cannot see at anyone tests that i have RP. I have got the diagnosing by the symptones alone: The swollowing red ears. I am lucky. I have only RP. Many people in this group have the RP mixed with another autoimmune diseace. Sorry to say it, but perhapse it's like that for you too. Greetings from Norway Sissel Should I go to Emerg? > Hi there: > I still haven't been formally diagnosed with RP. Since Jan./02 I've > been on Prednisone 50mg/day for 7 day stints, (then off till throat, > ears, joints, whatever swell again), 4 times!! > This last time (I took last Prednisone Sun. Feb. 24/02)I've been very > ill wvery day since I stopped the medicine. Mon. & Tues. I had no > range of motion in my R arm, couldn't even lift it enough to brush my > hair. By Wed. my ear started to redden, swell again, & the usual > discomfort. By Thursday the lump is back in my throat, & my breathing > is a bit laboured, (but nothing like when they took me into Emerg. & > the ENT specialist had to put the tube in). Then yesterday something > brand new started, and I had a bit of a lump behind my R knee, & it > felt warm & turned quite red. By last night it had spread up into > the back of mu thigh, & is now spreading around to the front of my > leg. I didn't sleep very well last night, & I woke with quite a > headache this morning that doesn't seem to be going away. My > eyesight isn't good again today, but that has happened before, & I > know it will go away. What I don't know is if I should drive into > the hospital. My family Dr. is away until next week. I have an > appointment to see him Thursday morning. I also see the > Respiratologist Tuesday morning. (He did PFT on me at the hospital a > few weeks back & I'm going to learn the results.) Thursday morning > (before I see my family Dr.), I have an appt. to see a Dermatologist, > who saw me last July, (when both ears first became red & swollen), & > who suggested RP, to my Dr., but said my blood work came back neg. > > What'd ya think? Do you think I need to call them or just try and > ride this out. I know that my auto immune isn't going to be fighting > to good, but I've always been the type of person to try and just > ride sickness out. Now I'm not too sure I should even attempt this. > > Anyway, as soon as I'm feeling a little better I'll try and fill you > all in about me. > > > > 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...
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