Guest guest Posted August 27, 2001 Report Share Posted August 27, 2001 HI SUE THANK YOU SO MUCH. I AM JUST LEARNING ABOUT THIS DRUG. FOR THE MOST PART I JUST USE TYLENOL. BUT THERE ARE DAYS THAT IT JUST DOESN'T CUT IT. I CAN'T SEEM TO CONVINCET EH DOCS OF THAT. DAWN Sue Park wrote: Dear Dawn I know people who take ultram for pain including the doctor I work for. He had extensive back surgery and said it helped alot. Alot of doctors offices have samples for you to try. It's ultram 50mgm and you take one or two every 4-6hours. Alot of our patients have gotten relief with it. However there have been a few that it didn't help too. It's worth a try especially if your doctor can give you a few samples to try. I hope this helps. Sue Park Re: ELAINE HI ELAINE I CAN SAY FOR SURE THAT ON SOME DAYS MY PAIN IS 15 OR HIGHER IF POSSIBLE. THE OTHER DAY I WAS HURTING SO BAD I TOOK BY BP AND IT WAS UP TO 185/125, AS SOON AS THE PAIN QUIT IT WENT DOWN TO NORMAL. THAT DAY I DID NOTHING BUT LAY AROUND AND SCREAM A LOT. THE NEXT WEEK THE DOC DOUBLED BY METHO FROM 10 TO 20 MGS. I HAVE ONLY DONE THAT FOR ONE WEEK SO I GUESS WE WILL HAVE TO WAIT AND SEE WHAT HAPPENS. I CAN'T TAKE A LOT OF THE PRESCRIPED STUFF FOR PAIN. THE DARVOSET AND LORASET AND TYLENOL 3 MAKE ME VERY SICK, NOT SURE WHAT ELSE TO EVEN TRY. FOR THE MOST PART REG. TYLENOL WILL WORK, BUT WHEN I HAVE A REALLY BAD DAY LIKE THE LAST ONE WAS I DO NEED SOMETHING ELSE, THATS FOR SURE. DAWN Elaine Thurber wrote: What i want to know is what can a person like me that has RP and is on the metho and pred take for pain besides tylenol that won't react with the other drugs.????? Hi Dawn, I take Empracet, It's very much like Tylenol 3, But stronger. Works ok, but pain killers don't work well on me anyhow. Can you not take Tylenol or haven't they given you a prescription pain killer yet? If they haven't prescribed you a pain killer, just kick them with 's pointing boots until they write one out. Tell them that on a scale of 1 to 10, you pain is a 15!!! Maybe they'll get the hint! ElaineDISCLAIMER!!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 August 27, 2001 Report Share Posted August 27, 2001 Dawn I think it's awful that you have to suffer through those really rough days when tylenol doesn't cut it. Your doctor should at least let you try ultram as it's least likely to be addictive out of all the other pain meds. At least that's what I've been told. I hope he helps you but if not get a new doctor who doesn't like to see patients suffer! Love Sue Park Re: ELAINE HI ELAINE I CAN SAY FOR SURE THAT ON SOME DAYS MY PAIN IS 15 OR HIGHER IF POSSIBLE. THE OTHER DAY I WAS HURTING SO BAD I TOOK BY BP AND IT WAS UP TO 185/125, AS SOON AS THE PAIN QUIT IT WENT DOWN TO NORMAL. THAT DAY I DID NOTHING BUT LAY AROUND AND SCREAM A LOT. THE NEXT WEEK THE DOC DOUBLED BY METHO FROM 10 TO 20 MGS. I HAVE ONLY DONE THAT FOR ONE WEEK SO I GUESS WE WILL HAVE TO WAIT AND SEE WHAT HAPPENS. I CAN'T TAKE A LOT OF THE PRESCRIPED STUFF FOR PAIN. THE DARVOSET AND LORASET AND TYLENOL 3 MAKE ME VERY SICK, NOT SURE WHAT ELSE TO EVEN TRY. FOR THE MOST PART REG. TYLENOL WILL WORK, BUT WHEN I HAVE A REALLY BAD DAY LIKE THE LAST ONE WAS I DO NEED SOMETHING ELSE, THATS FOR SURE. DAWN Elaine Thurber wrote: What i want to know is what can a person like me that has RP and is on the metho and pred take for pain besides tylenol that won't react with the other drugs.????? Hi Dawn, I take Empracet, It's very much like Tylenol 3, But stronger. Works ok, but pain killers don't work well on me anyhow. Can you not take Tylenol or haven't they given you a prescription pain killer yet? If they haven't prescribed you a pain killer, just kick them with 's pointing boots until they write one out. Tell them that on a scale of 1 to 10, you pain is a 15!!! Maybe they'll get the hint! ElaineDISCLAIMER!!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 August 27, 2001 Report Share Posted August 27, 2001 Dawn I think it's awful that you have to suffer through those really rough days when tylenol doesn't cut it. Your doctor should at least let you try ultram as it's least likely to be addictive out of all the other pain meds. At least that's what I've been told. I hope he helps you but if not get a new doctor who doesn't like to see patients suffer! Love Sue Park Re: ELAINE HI ELAINE I CAN SAY FOR SURE THAT ON SOME DAYS MY PAIN IS 15 OR HIGHER IF POSSIBLE. THE OTHER DAY I WAS HURTING SO BAD I TOOK BY BP AND IT WAS UP TO 185/125, AS SOON AS THE PAIN QUIT IT WENT DOWN TO NORMAL. THAT DAY I DID NOTHING BUT LAY AROUND AND SCREAM A LOT. THE NEXT WEEK THE DOC DOUBLED BY METHO FROM 10 TO 20 MGS. I HAVE ONLY DONE THAT FOR ONE WEEK SO I GUESS WE WILL HAVE TO WAIT AND SEE WHAT HAPPENS. I CAN'T TAKE A LOT OF THE PRESCRIPED STUFF FOR PAIN. THE DARVOSET AND LORASET AND TYLENOL 3 MAKE ME VERY SICK, NOT SURE WHAT ELSE TO EVEN TRY. FOR THE MOST PART REG. TYLENOL WILL WORK, BUT WHEN I HAVE A REALLY BAD DAY LIKE THE LAST ONE WAS I DO NEED SOMETHING ELSE, THATS FOR SURE. DAWN Elaine Thurber wrote: What i want to know is what can a person like me that has RP and is on the metho and pred take for pain besides tylenol that won't react with the other drugs.????? Hi Dawn, I take Empracet, It's very much like Tylenol 3, But stronger. Works ok, but pain killers don't work well on me anyhow. Can you not take Tylenol or haven't they given you a prescription pain killer yet? If they haven't prescribed you a pain killer, just kick them with 's pointing boots until they write one out. Tell them that on a scale of 1 to 10, you pain is a 15!!! Maybe they'll get the hint! ElaineDISCLAIMER!!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 September 18, 2001 Report Share Posted September 18, 2001 , I'm so glad that you are doing so well... If you don't mind me asking (because I can't remember) what were your first signs of throat and lung problems? I know you are going no mail for awhile, so there is no hurry, but when you can, could you give us a little information... Know I'm thinking of you and sending lots of hugs... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 , I'm so glad that you are doing so well... If you don't mind me asking (because I can't remember) what were your first signs of throat and lung problems? I know you are going no mail for awhile, so there is no hurry, but when you can, could you give us a little information... Know I'm thinking of you and sending lots of hugs... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 The only thing i can tell you is that my throat was tender to the touch. From the spot of my trach under my chin extending down to my neck or throat area(collar bone area). My trachea was so sore for at least a month. I lost my voice for that length of time too. This was in Nov 97. I got Diagnosed in Jan 98. In may 6 mos later that's when i start noticing my breathing changing. Sometimes i couldn't catch my breath. I was getting short of breath very easily. I was coughing a lot and very heavily. I was seeing a pulmonary doctor and an ENT at this time. They were telling me the problem but weren't doing anything about it. So this led me to believe that i was fine that it would go away. Wrong! I believe now if my steroids were heavily increased at this time i would not have a trach or a stent. They were so worried about me being on the high dosage of Prednisone for a long period of time that, I was on enough steroids in the beginning to get rid of all the inflammation. There is no one to blame my doctors knew little about this and i definately didn't know anything about it. My pulmonary doctor had me do this breathing test. He told me that i was getting air in but it wasn't coming all out. This was the narrowing that was taking place. At the time i didn't know this but now that i look back, i know what was happening. This disease is unfortunately one that you learn as you have the problem or trouble. Everything gets corrected as you go along. There is not one clear sign or warning signal that tells you okay somethings wrong or something needs to be done now otherwise this is what's going to happen. I hope you all understand what i am trying to say. But now that you know this maybe this will help someone out. lots of hugs to you to I guess my last 4 emails maid it through. Take Care everyone, i will be back online shortly Re: [Rpolychondritis , I'm so glad that you are doing so well... If you don't mind me asking (because I can't remember) what were your first signs of throat and lung problems? I know you are going no mail for awhile, so there is no hurry, but when you can, could you give us a little information... Know I'm thinking of you and sending lots of hugs...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 September 18, 2001 Report Share Posted September 18, 2001 The only thing i can tell you is that my throat was tender to the touch. From the spot of my trach under my chin extending down to my neck or throat area(collar bone area). My trachea was so sore for at least a month. I lost my voice for that length of time too. This was in Nov 97. I got Diagnosed in Jan 98. In may 6 mos later that's when i start noticing my breathing changing. Sometimes i couldn't catch my breath. I was getting short of breath very easily. I was coughing a lot and very heavily. I was seeing a pulmonary doctor and an ENT at this time. They were telling me the problem but weren't doing anything about it. So this led me to believe that i was fine that it would go away. Wrong! I believe now if my steroids were heavily increased at this time i would not have a trach or a stent. They were so worried about me being on the high dosage of Prednisone for a long period of time that, I was on enough steroids in the beginning to get rid of all the inflammation. There is no one to blame my doctors knew little about this and i definately didn't know anything about it. My pulmonary doctor had me do this breathing test. He told me that i was getting air in but it wasn't coming all out. This was the narrowing that was taking place. At the time i didn't know this but now that i look back, i know what was happening. This disease is unfortunately one that you learn as you have the problem or trouble. Everything gets corrected as you go along. There is not one clear sign or warning signal that tells you okay somethings wrong or something needs to be done now otherwise this is what's going to happen. I hope you all understand what i am trying to say. But now that you know this maybe this will help someone out. lots of hugs to you to I guess my last 4 emails maid it through. Take Care everyone, i will be back online shortly Re: [Rpolychondritis , I'm so glad that you are doing so well... If you don't mind me asking (because I can't remember) what were your first signs of throat and lung problems? I know you are going no mail for awhile, so there is no hurry, but when you can, could you give us a little information... Know I'm thinking of you and sending lots of hugs...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 September 21, 2001 Report Share Posted September 21, 2001 In a message dated 09/18/2001 9:07:03 PM Central Daylight Time, Ronnielyn27@... writes: << I hope you all understand what i am trying to say. >> , my ears were definitely a warning! That much pain in such a small area means something is definitely wrong. Finding out what it was and what to do about it was trickier that figuring out what it was. I'm not sure if I would prefer a less noticeable symptom, believe me, my ears had to be dealt with and quickly! I wish the doctors had been able to figure out the problem with your throat earlier, but as you said, they probably had never seen anything like it. Isn't it great being " unique " ? In my next life, I am goiing to be (a) HEALTHY, and ( only get simple, easy to cure illnesses! NOT RP! Take care of yourself, we are all praying for you. Love, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2001 Report Share Posted September 21, 2001 In a message dated 09/18/2001 9:07:03 PM Central Daylight Time, Ronnielyn27@... writes: << I hope you all understand what i am trying to say. >> , my ears were definitely a warning! That much pain in such a small area means something is definitely wrong. Finding out what it was and what to do about it was trickier that figuring out what it was. I'm not sure if I would prefer a less noticeable symptom, believe me, my ears had to be dealt with and quickly! I wish the doctors had been able to figure out the problem with your throat earlier, but as you said, they probably had never seen anything like it. Isn't it great being " unique " ? In my next life, I am goiing to be (a) HEALTHY, and ( only get simple, easy to cure illnesses! NOT RP! Take care of yourself, we are all praying for you. Love, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2001 Report Share Posted September 22, 2001 .. Please kep me in your prayrs. Love , you in my prayers! I'm praying you get to go those mountains and enjoy yourself!!!! Love you much! Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2001 Report Share Posted September 22, 2001 .. Please kep me in your prayrs. Love , you in my prayers! I'm praying you get to go those mountains and enjoy yourself!!!! Love you much! Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2001 Report Share Posted September 24, 2001 In a message dated 09/23/2001 1:26:11 AM Central Daylight Time, Lu1953@... writes: << kep me in your prayrs. > Love > >> Always. Love,Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2001 Report Share Posted September 24, 2001 In a message dated 09/23/2001 1:26:11 AM Central Daylight Time, Lu1953@... writes: << kep me in your prayrs. > Love > >> Always. Love,Judy Quote Link to comment Share on other sites More sharing options...
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