Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 Hi Lucy- how long and how much of the dapsone are you taking? I went to a new Rheumy a week ago and I think we're going to change some things around. I've been on prednisone for over a year- the amount varies, I started at 80 mg @day and have been trying to taper it down. I've gotten down to 0/5mg alternate days- but now back up to 30/25 alternate. The dapsone is at 100 mg @day and cholochine at 1.2 mg @day. This really doesn't seem to be working. I can't get the prednisone down. One thing the Dr. said was the way I increased it when flaring. I am trying to lower it by 5 mg @day, but when my ears/nose start bothering me I raise it back up by 5 mg at a time. I don't hurt tremendously, but then my one ear is totally distorted and the other is showing signs of distortion although not a lot of pain. Anyone else get distortion without pain. I'm scared that there will be a lot of damage, but I don't know if there's no pain. Anyways- the new rheumy thinks I should increase the pred (50-80 >) for a week then lower it and use the other meds to maintain. So far, can't think of this because my ears won't stop. Any thoughts? suggestions?? I'm learning so much about this disease and the new Dr's am I AM SO GLAD I HAVE YOU ALL TO TAP INTO YOUR KNOWLEDGE. Now, if I can remember it and keep moving forward!!!!! Re: Re: More updatesHi ,Hope you are still doing better on the Imuran. I have been feeling betterthese days. The medicine the doctor gave me for my sinus infection orwhatever it is. I have Nasacort, Atrovent and Serevent. I should befeeling some sort of way shouldn't I? As for the RP, I think it is beingquiet for now with the Dapsone.I am looking forward to a trip on the 16th to Alabama to celebrate myMother's 82nd birthday. She is in a nursing home in my home town and mySister from Arkansas, my Sister Dorothy from Pennsylvania and myBrother Thad and their families will be there. All I have to worry aboutnow is to get my van in running order.Got to run for now, will talk later.Love and Prayers, Lucy Re: More updates> Hi everyone, thanks Heidi for the updates on everyone. and Angiewill> be in my prayers.>> I just heard from Jo and she is at her daughters. She asked me for extra> special prayers tonight and tomorrow for her. I don't know why, but Ifyou> can please try to remember her.>> Nancie Legge also needs some prayers. Tues will be her last day of work.>> Darn you Heidi, those mice are coming to California. What did you> do.....Kick them here with 's pointy shoes?????? I bet you justgave> them one swift kick to the west, because they landed in my garage. Andthe> like the peanut butter sooo well that now they can get it off the traps> without getting caught. Some smart Okie mice.LOL>> How everyone is enjoying their weekend.>> I felt better today from the Imuran, so hopefully each day will get better> and soon i can start decreasing the pred. Yippee!!! Okay, I'm rushing ita> little, but the hope is there.>> Hugs to all> >>>> DISCLAIMER!!> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT ISRECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTORBEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOURPHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT ANDTREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 Hi Lucy- how long and how much of the dapsone are you taking? I went to a new Rheumy a week ago and I think we're going to change some things around. I've been on prednisone for over a year- the amount varies, I started at 80 mg @day and have been trying to taper it down. I've gotten down to 0/5mg alternate days- but now back up to 30/25 alternate. The dapsone is at 100 mg @day and cholochine at 1.2 mg @day. This really doesn't seem to be working. I can't get the prednisone down. One thing the Dr. said was the way I increased it when flaring. I am trying to lower it by 5 mg @day, but when my ears/nose start bothering me I raise it back up by 5 mg at a time. I don't hurt tremendously, but then my one ear is totally distorted and the other is showing signs of distortion although not a lot of pain. Anyone else get distortion without pain. I'm scared that there will be a lot of damage, but I don't know if there's no pain. Anyways- the new rheumy thinks I should increase the pred (50-80 >) for a week then lower it and use the other meds to maintain. So far, can't think of this because my ears won't stop. Any thoughts? suggestions?? I'm learning so much about this disease and the new Dr's am I AM SO GLAD I HAVE YOU ALL TO TAP INTO YOUR KNOWLEDGE. Now, if I can remember it and keep moving forward!!!!! Re: Re: More updatesHi ,Hope you are still doing better on the Imuran. I have been feeling betterthese days. The medicine the doctor gave me for my sinus infection orwhatever it is. I have Nasacort, Atrovent and Serevent. I should befeeling some sort of way shouldn't I? As for the RP, I think it is beingquiet for now with the Dapsone.I am looking forward to a trip on the 16th to Alabama to celebrate myMother's 82nd birthday. She is in a nursing home in my home town and mySister from Arkansas, my Sister Dorothy from Pennsylvania and myBrother Thad and their families will be there. All I have to worry aboutnow is to get my van in running order.Got to run for now, will talk later.Love and Prayers, Lucy Re: More updates> Hi everyone, thanks Heidi for the updates on everyone. and Angiewill> be in my prayers.>> I just heard from Jo and she is at her daughters. She asked me for extra> special prayers tonight and tomorrow for her. I don't know why, but Ifyou> can please try to remember her.>> Nancie Legge also needs some prayers. Tues will be her last day of work.>> Darn you Heidi, those mice are coming to California. What did you> do.....Kick them here with 's pointy shoes?????? I bet you justgave> them one swift kick to the west, because they landed in my garage. Andthe> like the peanut butter sooo well that now they can get it off the traps> without getting caught. Some smart Okie mice.LOL>> How everyone is enjoying their weekend.>> I felt better today from the Imuran, so hopefully each day will get better> and soon i can start decreasing the pred. Yippee!!! Okay, I'm rushing ita> little, but the hope is there.>> Hugs to all> >>>> DISCLAIMER!!> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT ISRECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTORBEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOURPHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT ANDTREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 Hi Lucy- how long and how much of the dapsone are you taking? I went to a new Rheumy a week ago and I think we're going to change some things around. I've been on prednisone for over a year- the amount varies, I started at 80 mg @day and have been trying to taper it down. I've gotten down to 0/5mg alternate days- but now back up to 30/25 alternate. The dapsone is at 100 mg @day and cholochine at 1.2 mg @day. This really doesn't seem to be working. I can't get the prednisone down. One thing the Dr. said was the way I increased it when flaring. I am trying to lower it by 5 mg @day, but when my ears/nose start bothering me I raise it back up by 5 mg at a time. I don't hurt tremendously, but then my one ear is totally distorted and the other is showing signs of distortion although not a lot of pain. Anyone else get distortion without pain. I'm scared that there will be a lot of damage, but I don't know if there's no pain. Anyways- the new rheumy thinks I should increase the pred (50-80 >) for a week then lower it and use the other meds to maintain. So far, can't think of this because my ears won't stop. Any thoughts? suggestions?? I'm learning so much about this disease and the new Dr's am I AM SO GLAD I HAVE YOU ALL TO TAP INTO YOUR KNOWLEDGE. Now, if I can remember it and keep moving forward!!!!! Re: Re: More updatesHi ,Hope you are still doing better on the Imuran. I have been feeling betterthese days. The medicine the doctor gave me for my sinus infection orwhatever it is. I have Nasacort, Atrovent and Serevent. I should befeeling some sort of way shouldn't I? As for the RP, I think it is beingquiet for now with the Dapsone.I am looking forward to a trip on the 16th to Alabama to celebrate myMother's 82nd birthday. She is in a nursing home in my home town and mySister from Arkansas, my Sister Dorothy from Pennsylvania and myBrother Thad and their families will be there. All I have to worry aboutnow is to get my van in running order.Got to run for now, will talk later.Love and Prayers, Lucy Re: More updates> Hi everyone, thanks Heidi for the updates on everyone. and Angiewill> be in my prayers.>> I just heard from Jo and she is at her daughters. She asked me for extra> special prayers tonight and tomorrow for her. I don't know why, but Ifyou> can please try to remember her.>> Nancie Legge also needs some prayers. Tues will be her last day of work.>> Darn you Heidi, those mice are coming to California. What did you> do.....Kick them here with 's pointy shoes?????? I bet you justgave> them one swift kick to the west, because they landed in my garage. Andthe> like the peanut butter sooo well that now they can get it off the traps> without getting caught. Some smart Okie mice.LOL>> How everyone is enjoying their weekend.>> I felt better today from the Imuran, so hopefully each day will get better> and soon i can start decreasing the pred. Yippee!!! Okay, I'm rushing ita> little, but the hope is there.>> Hugs to all> >>>> DISCLAIMER!!> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT ISRECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTORBEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOURPHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT ANDTREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 Lucy, Did you receive our flowers? We sent them and you were suppose to receive them on Sunday. Please let me know if you did receive them, Thank you, W >?>>>>>>>>>>>>>>>>>>>>>>> Thank you so very much for your prayers and support. I am home now, came home Thursday Love and Prayers, Lucy Quote Link to comment Share on other sites More sharing options...
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