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Cathy D, so glad to hear the your dad's dr is working with you so well... I

think you are on the right track... Sounds like you have a very compasionate

and interested Dr.

Tell your Dad Hi for me and I hope that the cytoxon works for him without any

side effects... Keeping you both in my prayers.

hugs

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Cathy D, so glad to hear the your dad's dr is working with you so well... I

think you are on the right track... Sounds like you have a very compasionate

and interested Dr.

Tell your Dad Hi for me and I hope that the cytoxon works for him without any

side effects... Keeping you both in my prayers.

hugs

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Hi,

Just got back from the second appt. with the rheumatologist. I think this might just work. Dr. Luggen actually talked to Dr. Herman(I was told he is a pioneer in RP but kind of retired) and is going by his recommendations. He is upping the Pred to 60mg a day. He is putting Dad on Cytoxin. He would like to get Dad stable and then see a thoracic guy to somehow open up the airway, stents or reconstruction. At least he didn't just say keep taking the Pred. I feel like he is interested and actively trying to find some answers. Weather they will work is another story as Dad is 78. He told us all the drawbacks to the drugs but also said that there isn't a lot of choice here. What do you all think? I was telling this doc I had read different things (I don't think he believed me about the sed rate being normal until he talked to Dr. Herman and he said the same thing). Thanks to all of you for all of the different things I have been reading. At least I can go to the appt. armed with some facts and trying to find answers.

Cathy D.

www.geocities.com/cdonohoue/

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Hi,

Just got back from the second appt. with the rheumatologist. I think this might just work. Dr. Luggen actually talked to Dr. Herman(I was told he is a pioneer in RP but kind of retired) and is going by his recommendations. He is upping the Pred to 60mg a day. He is putting Dad on Cytoxin. He would like to get Dad stable and then see a thoracic guy to somehow open up the airway, stents or reconstruction. At least he didn't just say keep taking the Pred. I feel like he is interested and actively trying to find some answers. Weather they will work is another story as Dad is 78. He told us all the drawbacks to the drugs but also said that there isn't a lot of choice here. What do you all think? I was telling this doc I had read different things (I don't think he believed me about the sed rate being normal until he talked to Dr. Herman and he said the same thing). Thanks to all of you for all of the different things I have been reading. At least I can go to the appt. armed with some facts and trying to find answers.

Cathy D.

www.geocities.com/cdonohoue/

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Dear Cathy, I'm glad to hear your Dad is doing alright but some of us have a real problem reading your mail. Its just too small. I have eye problems and cannot read small print. Just so you know...Sue

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Dear Cathy, I'm glad to hear your Dad is doing alright but some of us have a real problem reading your mail. Its just too small. I have eye problems and cannot read small print. Just so you know...Sue

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Cathy D. congratulations! Sounds like your dad is in good hands. I'm sure he appreciates all that you have done to get him to the right doctors and get the right treatment. We all know how difficult that can be, but you've done a great job. Where there is a will, there is always a way. I'm betting he's really thankful that you are his daughter! Love,Judy Dad's appt. Hi, Just got back from the second appt. with the rheumatologist. I think this might just work. Dr. Luggen actually talked to Dr. Herman(I was told he is a pioneer in RP but kind of retired) and is going by his recommendations. He is upping the Pred to 60mg a day. He is putting Dad on Cytoxin. He would like to get Dad stable and then see a thoracic guy to somehow open up the airway, stents or reconstruction. At least he didn't just say keep taking the Pred. I feel like he is interested and actively trying to find some answers. Weather they will work is another story as Dad is 78. He told us all the drawbacks to the drugs but also said that there isn't a lot of choice here. What do you all think? I was telling this doc I had read different things (I don't think he believed me about the sed rate being normal until he talked to Dr. Herman and he said the same thing). Thanks to all of you for all of the different things I have been reading. At least I can go to the appt. armed with some facts and trying to find answers. Cathy D. www.geocities.com/cdonohoue/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

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Cathy D. congratulations! Sounds like your dad is in good hands. I'm sure he appreciates all that you have done to get him to the right doctors and get the right treatment. We all know how difficult that can be, but you've done a great job. Where there is a will, there is always a way. I'm betting he's really thankful that you are his daughter! Love,Judy Dad's appt. Hi, Just got back from the second appt. with the rheumatologist. I think this might just work. Dr. Luggen actually talked to Dr. Herman(I was told he is a pioneer in RP but kind of retired) and is going by his recommendations. He is upping the Pred to 60mg a day. He is putting Dad on Cytoxin. He would like to get Dad stable and then see a thoracic guy to somehow open up the airway, stents or reconstruction. At least he didn't just say keep taking the Pred. I feel like he is interested and actively trying to find some answers. Weather they will work is another story as Dad is 78. He told us all the drawbacks to the drugs but also said that there isn't a lot of choice here. What do you all think? I was telling this doc I had read different things (I don't think he believed me about the sed rate being normal until he talked to Dr. Herman and he said the same thing). Thanks to all of you for all of the different things I have been reading. At least I can go to the appt. armed with some facts and trying to find answers. Cathy D. www.geocities.com/cdonohoue/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

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Cathy,

Glad to hear your Dad is getting help. I am also on Cytoxan.

Let me know how your Dad does on the Cytoxan.

How many MG.s is he starting out on? Did your Rheumy explain the importance of drinking lots of water?

Sandy

Hi,

Just got back from the second appt. with the rheumatologist. I think this might just work. Dr. Luggen actually talked to Dr. Herman(I was told he is a pioneer in RP but kind of retired) and is going by his recommendations. He is upping the Pred to 60mg a day. He is putting Dad on Cytoxin. He would like to get Dad stable and then see a thoracic guy to somehow open up the airway, stents or reconstruction. At least he didn't just say keep taking the Pred. I feel like he is interested and actively trying to find some answers. Weather they will work is another story as Dad is 78. He told us all the drawbacks to the drugs but also said that there isn't a lot of choice here. What do you all think? I was telling this doc I had read different things (I don't think he believed me about the sed rate being normal until he talked to Dr. Herman and he said the same thing). Thanks to all of you for all of the different things I have been reading. At least I can go to the appt. armed with some facts and trying to find answers.

Cathy D.

www.geocities.com/cdonohoue/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

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Cathy,

Glad to hear your Dad is getting help. I am also on Cytoxan.

Let me know how your Dad does on the Cytoxan.

How many MG.s is he starting out on? Did your Rheumy explain the importance of drinking lots of water?

Sandy

Hi,

Just got back from the second appt. with the rheumatologist. I think this might just work. Dr. Luggen actually talked to Dr. Herman(I was told he is a pioneer in RP but kind of retired) and is going by his recommendations. He is upping the Pred to 60mg a day. He is putting Dad on Cytoxin. He would like to get Dad stable and then see a thoracic guy to somehow open up the airway, stents or reconstruction. At least he didn't just say keep taking the Pred. I feel like he is interested and actively trying to find some answers. Weather they will work is another story as Dad is 78. He told us all the drawbacks to the drugs but also said that there isn't a lot of choice here. What do you all think? I was telling this doc I had read different things (I don't think he believed me about the sed rate being normal until he talked to Dr. Herman and he said the same thing). Thanks to all of you for all of the different things I have been reading. At least I can go to the appt. armed with some facts and trying to find answers.

Cathy D.

www.geocities.com/cdonohoue/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

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