Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 HI HEIDI, Thanks for the welcome.I live in Southeast Texas, I am about 2 hrs. from Houston so anything in that area but I would drive anywhere just to get some help and answers. At first the news scared me but I figured life is to short so I best get the most out of it and try and beat this thing. I have been having the ear problems for over 2 months and they are driving me crazy. My hair can cover them up but I am just scared about the possible nose and throat problems. I am hoping to meet new friends full of advice here and to be of any help I can. See ya, > Hallo , would like to willkomm you to the best group there is. Yes we > do have several RP's from Texas here in the group. > Where in Texas are you from Please ??? I am from Broken Arrow Ok. right out > side of Tulsa. Please ask all the ? you like > we are all here to help and guide you to find the answer. So > once again " Herzlich willkommen " > Heidi > > > > HI, My name is and I am 47 and live in Texas. I was just > > diagonsed with RP and am wondering if there is anyone from here and > > what Dr. are they seeing. So far both ears are affected and I am on > > 40 predisone a day. I need all the info and help anyone can give me. > > Thanks. > > > > > > > > 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 7, 2001 Report Share Posted September 7, 2001 HI HEIDI, Thanks for the welcome.I live in Southeast Texas, I am about 2 hrs. from Houston so anything in that area but I would drive anywhere just to get some help and answers. At first the news scared me but I figured life is to short so I best get the most out of it and try and beat this thing. I have been having the ear problems for over 2 months and they are driving me crazy. My hair can cover them up but I am just scared about the possible nose and throat problems. I am hoping to meet new friends full of advice here and to be of any help I can. See ya, > Hallo , would like to willkomm you to the best group there is. Yes we > do have several RP's from Texas here in the group. > Where in Texas are you from Please ??? I am from Broken Arrow Ok. right out > side of Tulsa. Please ask all the ? you like > we are all here to help and guide you to find the answer. So > once again " Herzlich willkommen " > Heidi > > > > HI, My name is and I am 47 and live in Texas. I was just > > diagonsed with RP and am wondering if there is anyone from here and > > what Dr. are they seeing. So far both ears are affected and I am on > > 40 predisone a day. I need all the info and help anyone can give me. > > Thanks. > > > > > > > > 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 7, 2001 Report Share Posted September 7, 2001 Hallo , would like to willkomm you to the best group there is. Yes we do have several RP's from Texas here in the group. Where in Texas are you from Please ??? I am from Broken Arrow Ok. right out side of Tulsa. Please ask all the ? you like we are all here to help and guide you to find the answer. So once again " Herzlich willkommen " Heidi > HI, My name is and I am 47 and live in Texas. I was just > diagonsed with RP and am wondering if there is anyone from here and > what Dr. are they seeing. So far both ears are affected and I am on > 40 predisone a day. I need all the info and help anyone can give me. > Thanks. > > > > 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 7, 2001 Report Share Posted September 7, 2001 Hallo , would like to willkomm you to the best group there is. Yes we do have several RP's from Texas here in the group. Where in Texas are you from Please ??? I am from Broken Arrow Ok. right out side of Tulsa. Please ask all the ? you like we are all here to help and guide you to find the answer. So once again " Herzlich willkommen " Heidi > HI, My name is and I am 47 and live in Texas. I was just > diagonsed with RP and am wondering if there is anyone from here and > what Dr. are they seeing. So far both ears are affected and I am on > 40 predisone a day. I need all the info and help anyone can give me. > Thanks. > > > > 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 7, 2001 Report Share Posted September 7, 2001 Hi , and welcome to the group. I'm fairly new myself. You can't find a better group of people. They have helped me enormously by point me in the right direction for medical help. My PCP new what I had but didn't know how to treat it. Thanks to this group I have a very good Rheumy. Just keep asking questions and someone will help you. You take care of yourself. Ann NEW AND NEED ADVICE > HI, My name is and I am 47 and live in Texas. I was just > diagonsed with RP and am wondering if there is anyone from here and > what Dr. are they seeing. So far both ears are affected and I am on > 40 predisone a day. I need all the info and help anyone can give me. > Thanks. > > > > 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 7, 2001 Report Share Posted September 7, 2001 Hi , and welcome to the group. I'm fairly new myself. You can't find a better group of people. They have helped me enormously by point me in the right direction for medical help. My PCP new what I had but didn't know how to treat it. Thanks to this group I have a very good Rheumy. Just keep asking questions and someone will help you. You take care of yourself. Ann NEW AND NEED ADVICE > HI, My name is and I am 47 and live in Texas. I was just > diagonsed with RP and am wondering if there is anyone from here and > what Dr. are they seeing. So far both ears are affected and I am on > 40 predisone a day. I need all the info and help anyone can give me. > Thanks. > > > > 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 7, 2001 Report Share Posted September 7, 2001 In a message dated 09/07/2001 6:25:06 AM Central Daylight Time, nant8@... writes: << HI, My name is and I am 47 and live in Texas. I >> Hi, . Sorry that you have RP, but glad you found us. There are many in the group much better versed in this disease than I am, so I'll let them give the info. My name is Judy Ostry (JOstry93@aol) I am 54, and have been married to my honey for 32 years. We have two adult children, and Kerri. lives in Denver with my grandchildren Darian and Skylar, and I miss them terribly. , relax you have come to the right place. If you've read Dr. Trentham's article and seen the pictures, rest assured that these are incredibly old and out of date. Granted there is no cure for RP YET, but it can be treated with a number of medicines. I am on Methotrexate (20 mgs) and pred 4 mgs (aiming for ) and I feel fine. I have my days (generally chemo dayand the day after) but I'm fine the rest of the time. Welcome and take care and just jump in and ask all the questions you want, we don't bight! Love, Judy O 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 09/07/2001 6:25:06 AM Central Daylight Time, nant8@... writes: << HI, My name is and I am 47 and live in Texas. I >> Hi, . Sorry that you have RP, but glad you found us. There are many in the group much better versed in this disease than I am, so I'll let them give the info. My name is Judy Ostry (JOstry93@aol) I am 54, and have been married to my honey for 32 years. We have two adult children, and Kerri. lives in Denver with my grandchildren Darian and Skylar, and I miss them terribly. , relax you have come to the right place. If you've read Dr. Trentham's article and seen the pictures, rest assured that these are incredibly old and out of date. Granted there is no cure for RP YET, but it can be treated with a number of medicines. I am on Methotrexate (20 mgs) and pred 4 mgs (aiming for ) and I feel fine. I have my days (generally chemo dayand the day after) but I'm fine the rest of the time. Welcome and take care and just jump in and ask all the questions you want, we don't bight! Love, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Hi , Welcome to our wonderful group. Looking at my new list of members, we have at least 3 members from Texas. They are: Alesia...her email addy is: alescamp@... ......her email is: Ronnielyn@... and Shirley....her email addy is: TNColbath@... Hope that helps and good luck. W >>>>>>>>>>>>>>>>>>>>>>>>> HI, My name is and I am 47 and live in Texas. I was just diagonsed with RP and am wondering if there is anyone from here and what Dr. are they seeing Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Hi , Welcome to our wonderful group. Looking at my new list of members, we have at least 3 members from Texas. They are: Alesia...her email addy is: alescamp@... ......her email is: Ronnielyn@... and Shirley....her email addy is: TNColbath@... Hope that helps and good luck. W >>>>>>>>>>>>>>>>>>>>>>>>> HI, My name is and I am 47 and live in Texas. I was just diagonsed with RP and am wondering if there is anyone from here and what Dr. are they seeing Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Hi WElcome to the family, but sorry you need to be here. I do not live in Texas but there are others that do and I am sure they will reply to you about doctors. what info do you want? love, hugs and hope Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Hi WElcome to the family, but sorry you need to be here. I do not live in Texas but there are others that do and I am sure they will reply to you about doctors. what info do you want? love, hugs and hope Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2001 Report Share Posted September 10, 2001 In a message dated 9/10/01 4:43:30 PM Pacific Daylight Time, nant8@... writes: << I went back to the Dr. today because the ears are still inflamed. I have been on 40mg. of predisone a day for 2 months. So far no help. Is that alot and can it hurt being on that much for long? Thanks again. >> It sounds to me like you need more pred or maybe add another drug... If you are still flaring you need to stop it fast... If it were me I would have my dr up the predisone to a dose that stops the flare and then taper down.. Just my 2 cents. I have been on pred for almost 3 years and THAT is a long time... It is now starting to do more damage than good... I started out on 80 mg of pred. and am now down to 9 mg... Yippee... I wouldn't suggest being on it any longer than you have to, but in some cases we have to always be on a maintainance dose. Some others don't... they just take it short term when they have a flare... Other meds such as metho or imuran can also help you decrease or get off the pred. I hope you can get your flare under control and stopped as fast as possible... Did your dr up the pred today? What did he say? Please let us know how you are doing and Please try to stop that flare. Remember damage can be done by each and every flare.. you will be in my thoughts and prayers. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2001 Report Share Posted September 10, 2001 In a message dated 9/10/01 4:43:30 PM Pacific Daylight Time, nant8@... writes: << I went back to the Dr. today because the ears are still inflamed. I have been on 40mg. of predisone a day for 2 months. So far no help. Is that alot and can it hurt being on that much for long? Thanks again. >> It sounds to me like you need more pred or maybe add another drug... If you are still flaring you need to stop it fast... If it were me I would have my dr up the predisone to a dose that stops the flare and then taper down.. Just my 2 cents. I have been on pred for almost 3 years and THAT is a long time... It is now starting to do more damage than good... I started out on 80 mg of pred. and am now down to 9 mg... Yippee... I wouldn't suggest being on it any longer than you have to, but in some cases we have to always be on a maintainance dose. Some others don't... they just take it short term when they have a flare... Other meds such as metho or imuran can also help you decrease or get off the pred. I hope you can get your flare under control and stopped as fast as possible... Did your dr up the pred today? What did he say? Please let us know how you are doing and Please try to stop that flare. Remember damage can be done by each and every flare.. you will be in my thoughts and prayers. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2001 Report Share Posted September 10, 2001 , thanks for the emails. I have wrote to each of them so hopefully I will hear something soon. I went back to the Dr. today because the ears are still inflamed. I have been on 40mg. of predisone a day for 2 months. So far no help. Is that alot and can it hurt being on that much for long? Thanks again. > Hi , > Welcome to our wonderful group. > Looking at my new list of members, we have at least 3 members from Texas. > They are: > Alesia...her email addy is: > alescamp@a... > ......her email is: > Ronnielyn@h... > and Shirley....her email addy is: > TNColbath@a... > Hope that helps and good luck. > W > >>>>>>>>>>>>>>>>>>>>>>>>> > HI, My name is and I am 47 and live in Texas. I was just > diagonsed with RP and am wondering if there is anyone from here and > what Dr. are they seeing Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2001 Report Share Posted September 10, 2001 , thanks for the emails. I have wrote to each of them so hopefully I will hear something soon. I went back to the Dr. today because the ears are still inflamed. I have been on 40mg. of predisone a day for 2 months. So far no help. Is that alot and can it hurt being on that much for long? Thanks again. > Hi , > Welcome to our wonderful group. > Looking at my new list of members, we have at least 3 members from Texas. > They are: > Alesia...her email addy is: > alescamp@a... > ......her email is: > Ronnielyn@h... > and Shirley....her email addy is: > TNColbath@a... > Hope that helps and good luck. > W > >>>>>>>>>>>>>>>>>>>>>>>>> > HI, My name is and I am 47 and live in Texas. I was just > diagonsed with RP and am wondering if there is anyone from here and > what Dr. are they seeing Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 --- nant8@... wrote: > , thanks for the emails. I have wrote to each > of them so > hopefully I will hear something soon. I went back to > the Dr. today > because the ears are still inflamed. I have been on > 40mg. of > predisone a day for 2 months. So far no help. Is > that alot and can it > hurt being on that much for long? Thanks again. > > Hello , welcome to the group - sorry about the RP. You have found the right place for general information about RP and other peoples experiences! Also a great place for a laugh when you are feeling a bit down. Anyone who is on prednisone for an extended period should be aware of long term side effects. Take extra calcium, try to do weight bearing exercise (i.e. walking) as much as possible, try and eat healthily (lots of veggies, I make a lot of low fat veggie soups to snack on) because it encourages weight gain. Also think about estrogen & talk to your doc about it if you are near menopause (EITHER way); get a bone density scan, get your eyes checked regularly explaining that you have been taking prednisone. However do not forget that prednisone is frequently a life saver for people with autoimmune diseases. What usually happens is that when you are a bit more stable your rheumy wil put you on an immune system supressor such as methotrexate, plaquenil, imuran or there are some new ones. This enable you to minimise your pred, but have different side effects. The trick is to find the balance!!! Not always easy, but possible. Good luck, love liz > > > > > > > > > > > > > Hi , > > Welcome to our wonderful group. > > Looking at my new list of members, we have at > least 3 members from > Texas. > > They are: > > Alesia...her email addy is: > > alescamp@a... > > ......her email is: > > Ronnielyn@h... > > and Shirley....her email addy is: > > TNColbath@a... > > Hope that helps and good luck. > > W > > >>>>>>>>>>>>>>>>>>>>>>>>> > > HI, My name is and I am 47 and live in > Texas. I was just > > diagonsed with RP and am wondering if there is > anyone from here and > > what Dr. are they seeing > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 --- nant8@... wrote: > , thanks for the emails. I have wrote to each > of them so > hopefully I will hear something soon. I went back to > the Dr. today > because the ears are still inflamed. I have been on > 40mg. of > predisone a day for 2 months. So far no help. Is > that alot and can it > hurt being on that much for long? Thanks again. > > Hello , welcome to the group - sorry about the RP. You have found the right place for general information about RP and other peoples experiences! Also a great place for a laugh when you are feeling a bit down. Anyone who is on prednisone for an extended period should be aware of long term side effects. Take extra calcium, try to do weight bearing exercise (i.e. walking) as much as possible, try and eat healthily (lots of veggies, I make a lot of low fat veggie soups to snack on) because it encourages weight gain. Also think about estrogen & talk to your doc about it if you are near menopause (EITHER way); get a bone density scan, get your eyes checked regularly explaining that you have been taking prednisone. However do not forget that prednisone is frequently a life saver for people with autoimmune diseases. What usually happens is that when you are a bit more stable your rheumy wil put you on an immune system supressor such as methotrexate, plaquenil, imuran or there are some new ones. This enable you to minimise your pred, but have different side effects. The trick is to find the balance!!! Not always easy, but possible. Good luck, love liz > > > > > > > > > > > > > Hi , > > Welcome to our wonderful group. > > Looking at my new list of members, we have at > least 3 members from > Texas. > > They are: > > Alesia...her email addy is: > > alescamp@a... > > ......her email is: > > Ronnielyn@h... > > and Shirley....her email addy is: > > TNColbath@a... > > Hope that helps and good luck. > > W > > >>>>>>>>>>>>>>>>>>>>>>>>> > > HI, My name is and I am 47 and live in > Texas. I was just > > diagonsed with RP and am wondering if there is > anyone from here and > > what Dr. are they seeing > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2001 Report Share Posted September 13, 2001 , thanks for the emails. I have wrote to each of them so hopefully I will hear something soon. I went back to the Dr. today because the ears are still inflamed. I have been on 40mg. of predisone a day for 2 months. So far no help. Is that alot and can it hurt being on that much for long? Thanks again. , did you get the list of Rheumy's I sent you from Texas? I thought that might help you narrow your search? If you didn't get it let me know and I will resend it to you~ Take care, Love Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2001 Report Share Posted September 13, 2001 , thanks for the emails. I have wrote to each of them so hopefully I will hear something soon. I went back to the Dr. today because the ears are still inflamed. I have been on 40mg. of predisone a day for 2 months. So far no help. Is that alot and can it hurt being on that much for long? Thanks again. , did you get the list of Rheumy's I sent you from Texas? I thought that might help you narrow your search? If you didn't get it let me know and I will resend it to you~ Take care, Love Lu Quote Link to comment Share on other sites More sharing options...
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