Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 Sue, I'm so sorry you are having such a tough time. This disease is incredibly frustrating and confusing, and it seems each doctor wants to try something different, it's enough to make you crazy! Try not to let it get you down, I know you're saying "easier said than done", and believe me, I know it. I think writing all your problems and questions to someone else is very healthy, even if it means you'll get a hundred different answers. But you'll also know that there are a hundred + people out here who care enough to answer you, and you have to admit that is a great thing. All this love and caring just overwhelming you, pretty cool, huh? There times, Sue, when all we can do in hang on and pray and "talking" to each other helps so much! Take care, hang in there, pray that it will get better soon, and know you are loved. Love, Judy O Re: My prednisone Okay here goes. They started me in the hospital on 20 mg twice a day. Thatwas 2 weeks ago. Last Thurs I went to 20 in the am 10 in the pm. Today Istart 20 in the am & 5 in the pm. Next Thursday 20 & 0 & then 15 for aweek. I just put on my computer glasses & noticed my regular glasses left atight mark on the side of my face so I am swelling.Went to see the rheumy Tues. I like her & she was very imformative. I amstill so confused. My left eye was permanently damaged by the uveitis & stroke & the right eye is now involved. I have a massive infection in theright ear & the left ear also has an infection. They said it is becausethe RP closed off the ear with the swelling. The ENT took care of thatyesterday. I am on 10 drops of cipro for the ear 4 times a day in each ear.I go back Next Weds. for a recheck.Went to my Internist yesterday. Had a long talk about how I felt shethought I was imagining things the week before I was diagnosed. She waslooking through my chart & commented on how all tests were normal & shedidn't know what to do. I really felt bad. She felt there was somethingbut she couldn't put her finger on it. I feel better since the air wascleared. Totally floored her though when I said that. I cried my waythrough the visit & she had tears quite a few times. I go back in two weeksto see her & a month to the rheumy. If my face is really swelling I know Iwon't make it that long.I tried to explain to the them that it is difficult to get a job right nowsince I am having so much trouble seeing.. The pred is screwing up my eyesbig time. Had a hard time driving yesterday because of blurriness. Alsowith the permanent damamge the eye guy wants to wait for it to settle downbefore I can get a prescription change. The only thing I've ever done issecretarial work for 35 years & that consists of computer work which isterrible on the eyes. The rheumy said there are other jobs out there.Doesn't she realize you use your eyes for everything you do. I understandthat many of us work & do well, but at this time it isn't right for me. SoI'm stuck between a rock & a hard place.Having a bad time with my ear. It really hurts inside & now it is sorearound the ear too, face, scalp etc. This is so frustrating. I'm so gladthere is someone to talk to. My husband doesn't understand but he istrying. The Dr. talked to him also yesterday which was a help.Well, I've taken enough of your time. Thanks for the ear.Sue Staniec Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 Sue, I'm so sorry you are having such a tough time. This disease is incredibly frustrating and confusing, and it seems each doctor wants to try something different, it's enough to make you crazy! Try not to let it get you down, I know you're saying "easier said than done", and believe me, I know it. I think writing all your problems and questions to someone else is very healthy, even if it means you'll get a hundred different answers. But you'll also know that there are a hundred + people out here who care enough to answer you, and you have to admit that is a great thing. All this love and caring just overwhelming you, pretty cool, huh? There times, Sue, when all we can do in hang on and pray and "talking" to each other helps so much! Take care, hang in there, pray that it will get better soon, and know you are loved. Love, Judy O Re: My prednisone Okay here goes. They started me in the hospital on 20 mg twice a day. Thatwas 2 weeks ago. Last Thurs I went to 20 in the am 10 in the pm. Today Istart 20 in the am & 5 in the pm. Next Thursday 20 & 0 & then 15 for aweek. I just put on my computer glasses & noticed my regular glasses left atight mark on the side of my face so I am swelling.Went to see the rheumy Tues. I like her & she was very imformative. I amstill so confused. My left eye was permanently damaged by the uveitis & stroke & the right eye is now involved. I have a massive infection in theright ear & the left ear also has an infection. They said it is becausethe RP closed off the ear with the swelling. The ENT took care of thatyesterday. I am on 10 drops of cipro for the ear 4 times a day in each ear.I go back Next Weds. for a recheck.Went to my Internist yesterday. Had a long talk about how I felt shethought I was imagining things the week before I was diagnosed. She waslooking through my chart & commented on how all tests were normal & shedidn't know what to do. I really felt bad. She felt there was somethingbut she couldn't put her finger on it. I feel better since the air wascleared. Totally floored her though when I said that. I cried my waythrough the visit & she had tears quite a few times. I go back in two weeksto see her & a month to the rheumy. If my face is really swelling I know Iwon't make it that long.I tried to explain to the them that it is difficult to get a job right nowsince I am having so much trouble seeing.. The pred is screwing up my eyesbig time. Had a hard time driving yesterday because of blurriness. Alsowith the permanent damamge the eye guy wants to wait for it to settle downbefore I can get a prescription change. The only thing I've ever done issecretarial work for 35 years & that consists of computer work which isterrible on the eyes. The rheumy said there are other jobs out there.Doesn't she realize you use your eyes for everything you do. I understandthat many of us work & do well, but at this time it isn't right for me. SoI'm stuck between a rock & a hard place.Having a bad time with my ear. It really hurts inside & now it is sorearound the ear too, face, scalp etc. This is so frustrating. I'm so gladthere is someone to talk to. My husband doesn't understand but he istrying. The Dr. talked to him also yesterday which was a help.Well, I've taken enough of your time. Thanks for the ear.Sue Staniec Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 Okay here goes. They started me in the hospital on 20 mg twice a day. That was 2 weeks ago. Last Thurs I went to 20 in the am 10 in the pm. Today I start 20 in the am & 5 in the pm. Next Thursday 20 & 0 & then 15 for a week. I just put on my computer glasses & noticed my regular glasses left a tight mark on the side of my face so I am swelling. Went to see the rheumy Tues. I like her & she was very imformative. I am still so confused. My left eye was permanently damaged by the uveitis & stroke & the right eye is now involved. I have a massive infection in the right ear & the left ear also has an infection. They said it is because the RP closed off the ear with the swelling. The ENT took care of that yesterday. I am on 10 drops of cipro for the ear 4 times a day in each ear. I go back Next Weds. for a recheck. Went to my Internist yesterday. Had a long talk about how I felt she thought I was imagining things the week before I was diagnosed. She was looking through my chart & commented on how all tests were normal & she didn't know what to do. I really felt bad. She felt there was something but she couldn't put her finger on it. I feel better since the air was cleared. Totally floored her though when I said that. I cried my way through the visit & she had tears quite a few times. I go back in two weeks to see her & a month to the rheumy. If my face is really swelling I know I won't make it that long. I tried to explain to the them that it is difficult to get a job right now since I am having so much trouble seeing.. The pred is screwing up my eyes big time. Had a hard time driving yesterday because of blurriness. Also with the permanent damamge the eye guy wants to wait for it to settle down before I can get a prescription change. The only thing I've ever done is secretarial work for 35 years & that consists of computer work which is terrible on the eyes. The rheumy said there are other jobs out there. Doesn't she realize you use your eyes for everything you do. I understand that many of us work & do well, but at this time it isn't right for me. So I'm stuck between a rock & a hard place. Having a bad time with my ear. It really hurts inside & now it is sore around the ear too, face, scalp etc. This is so frustrating. I'm so glad there is someone to talk to. My husband doesn't understand but he is trying. The Dr. talked to him also yesterday which was a help. Well, I've taken enough of your time. Thanks for the ear. Sue Staniec Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 Okay here goes. They started me in the hospital on 20 mg twice a day. That was 2 weeks ago. Last Thurs I went to 20 in the am 10 in the pm. Today I start 20 in the am & 5 in the pm. Next Thursday 20 & 0 & then 15 for a week. I just put on my computer glasses & noticed my regular glasses left a tight mark on the side of my face so I am swelling. Went to see the rheumy Tues. I like her & she was very imformative. I am still so confused. My left eye was permanently damaged by the uveitis & stroke & the right eye is now involved. I have a massive infection in the right ear & the left ear also has an infection. They said it is because the RP closed off the ear with the swelling. The ENT took care of that yesterday. I am on 10 drops of cipro for the ear 4 times a day in each ear. I go back Next Weds. for a recheck. Went to my Internist yesterday. Had a long talk about how I felt she thought I was imagining things the week before I was diagnosed. She was looking through my chart & commented on how all tests were normal & she didn't know what to do. I really felt bad. She felt there was something but she couldn't put her finger on it. I feel better since the air was cleared. Totally floored her though when I said that. I cried my way through the visit & she had tears quite a few times. I go back in two weeks to see her & a month to the rheumy. If my face is really swelling I know I won't make it that long. I tried to explain to the them that it is difficult to get a job right now since I am having so much trouble seeing.. The pred is screwing up my eyes big time. Had a hard time driving yesterday because of blurriness. Also with the permanent damamge the eye guy wants to wait for it to settle down before I can get a prescription change. The only thing I've ever done is secretarial work for 35 years & that consists of computer work which is terrible on the eyes. The rheumy said there are other jobs out there. Doesn't she realize you use your eyes for everything you do. I understand that many of us work & do well, but at this time it isn't right for me. So I'm stuck between a rock & a hard place. Having a bad time with my ear. It really hurts inside & now it is sore around the ear too, face, scalp etc. This is so frustrating. I'm so glad there is someone to talk to. My husband doesn't understand but he is trying. The Dr. talked to him also yesterday which was a help. Well, I've taken enough of your time. Thanks for the ear. Sue Staniec Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 --- Ted Staniec wrote: > Having a bad time with my ear. It really hurts > inside & now it is sore > around the ear too, face, scalp etc. This is so > frustrating. I'm so glad > there is someone to talk to. My husband doesn't > understand but he is > trying. The Dr. talked to him also yesterday which > was a help. > > Well, I've taken enough of your time. Thanks for > the ear. > > Sue Staniec > > What a fun thing to say to the RP group! " Thanks for the ear " . I'm so sorry that you are having such a rough time right now. Hope things begin to turn around for you really soon. Does your rheumy have you on anything else besides the prednisone? There are many drugs that are being used to treat RP. I was interested in what you had to say about your face swelling. Sometimes my glasses are so loose they almost fall off, but I have not had them adjusted cause sometimes I can barely peel them off! I thought it was just me being weird, but maybe not. I've had lots of problems with my eyes and my ears but am doing much better since I started Enbrel. It actually feels strange not to be " aware " of my ears 24/7!! Take care. It sounds as if you have doctors who care about you and that is a bonus. Love, Sharon ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 --- Ted Staniec wrote: > Having a bad time with my ear. It really hurts > inside & now it is sore > around the ear too, face, scalp etc. This is so > frustrating. I'm so glad > there is someone to talk to. My husband doesn't > understand but he is > trying. The Dr. talked to him also yesterday which > was a help. > > Well, I've taken enough of your time. Thanks for > the ear. > > Sue Staniec > > What a fun thing to say to the RP group! " Thanks for the ear " . I'm so sorry that you are having such a rough time right now. Hope things begin to turn around for you really soon. Does your rheumy have you on anything else besides the prednisone? There are many drugs that are being used to treat RP. I was interested in what you had to say about your face swelling. Sometimes my glasses are so loose they almost fall off, but I have not had them adjusted cause sometimes I can barely peel them off! I thought it was just me being weird, but maybe not. I've had lots of problems with my eyes and my ears but am doing much better since I started Enbrel. It actually feels strange not to be " aware " of my ears 24/7!! Take care. It sounds as if you have doctors who care about you and that is a bonus. Love, Sharon ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2001 Report Share Posted October 12, 2001 Sue, I am very concerned, as well as many others based on what I have read, that you are coming down off of the prednisone so fast. The Dr. is tapering your prednisone down like you would a person who is on it for respiratory problems or other types of inflammatory problems. I have only been diagnosed for 4 months and we have yet to start trying to bring my prednisone down. I was also put on Methotrexate and we are still increasing that every few weeks because I haven't gotten to a dose yet that is preventing me from having flares. When we get the Methotrexate adjusted and stable for awhile, then I will start trying to taper the prednisone. It all has to be done one step at a time and very slowly. If you start adjusting more than one medication at a time and begin having problems then you can't be sure which medication is the problem. I hope you hear from your Dr. today so you can maybe have a little peace for your weekend. Kathi > >Reply-To: Rpolychondritis >To: Rpolychondritis >Subject: Re: Re: My prednisone >Date: Thu, 11 Oct 2001 18:17:14 -0700 (PDT) > > >--- Ted Staniec wrote: > > > Having a bad time with my ear. It really hurts > > inside & now it is sore > > around the ear too, face, scalp etc. This is so > > frustrating. I'm so glad > > there is someone to talk to. My husband doesn't > > understand but he is > > trying. The Dr. talked to him also yesterday which > > was a help. > > > > Well, I've taken enough of your time. Thanks for > > the ear. > > > > Sue Staniec > > > > >What a fun thing to say to the RP group! " Thanks for >the ear " . I'm so sorry that you are having such a >rough time right now. Hope things begin to turn >around for you really soon. > >Does your rheumy have you on anything else besides the >prednisone? There are many drugs that are being used >to treat RP. > >I was interested in what you had to say about your >face swelling. Sometimes my glasses are so loose they >almost fall off, but I have not had them adjusted >cause sometimes I can barely peel them off! I thought >it was just me being weird, but maybe not. > >I've had lots of problems with my eyes and my ears but >am doing much better since I started Enbrel. It >actually feels strange not to be " aware " of my ears >24/7!! > >Take care. It sounds as if you have doctors who care >about you and that is a bonus. > >Love, Sharon > >===== > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2001 Report Share Posted October 12, 2001 Sue, I am very concerned, as well as many others based on what I have read, that you are coming down off of the prednisone so fast. The Dr. is tapering your prednisone down like you would a person who is on it for respiratory problems or other types of inflammatory problems. I have only been diagnosed for 4 months and we have yet to start trying to bring my prednisone down. I was also put on Methotrexate and we are still increasing that every few weeks because I haven't gotten to a dose yet that is preventing me from having flares. When we get the Methotrexate adjusted and stable for awhile, then I will start trying to taper the prednisone. It all has to be done one step at a time and very slowly. If you start adjusting more than one medication at a time and begin having problems then you can't be sure which medication is the problem. I hope you hear from your Dr. today so you can maybe have a little peace for your weekend. Kathi > >Reply-To: Rpolychondritis >To: Rpolychondritis >Subject: Re: Re: My prednisone >Date: Thu, 11 Oct 2001 18:17:14 -0700 (PDT) > > >--- Ted Staniec wrote: > > > Having a bad time with my ear. It really hurts > > inside & now it is sore > > around the ear too, face, scalp etc. This is so > > frustrating. I'm so glad > > there is someone to talk to. My husband doesn't > > understand but he is > > trying. The Dr. talked to him also yesterday which > > was a help. > > > > Well, I've taken enough of your time. Thanks for > > the ear. > > > > Sue Staniec > > > > >What a fun thing to say to the RP group! " Thanks for >the ear " . I'm so sorry that you are having such a >rough time right now. Hope things begin to turn >around for you really soon. > >Does your rheumy have you on anything else besides the >prednisone? There are many drugs that are being used >to treat RP. > >I was interested in what you had to say about your >face swelling. Sometimes my glasses are so loose they >almost fall off, but I have not had them adjusted >cause sometimes I can barely peel them off! I thought >it was just me being weird, but maybe not. > >I've had lots of problems with my eyes and my ears but >am doing much better since I started Enbrel. It >actually feels strange not to be " aware " of my ears >24/7!! > >Take care. It sounds as if you have doctors who care >about you and that is a bonus. > >Love, Sharon > >===== > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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