Guest guest Report post Posted April 1, 2001 Hi Sandy, Is Dr. Hoffman at the Cleveland Clinic also? Do you like Dr. MacIntyre? Just curious about the 2 doctors in case I ever came that way. Lu I have not seen Dr Hoffman. I was going to make an appointment with him but found out about Dr. MacIntyre at Cleveland Clinic Westlake. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 1, 2001 Hi Sandy, Well I'm not sure if I like my doctor. lol But I think the Cleveland Clinic is a awesome place to get medical care. You know if I ever came that way I would contact you . Your a special lady in my book. Take care, and give a hug from me. I love u Lu Lu, Dr. Hoffman and Dr. Macintyre are with the Cleveland Clinic. Dr Hoffman was recommended by my pulmonologist, B. sees Dr. Hoffman. Dr Macintyre just recently joined the Clinic. I think he is great, he really knows his RP. He is also into research and teaches. If you ever come this way you better let me know!! LOL You can come and stay at my home. Are you having a problem with your doctor? Love, Sandy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 1, 2001 Hi Sandy, Well I'm not sure if I like my doctor. lol But I think the Cleveland Clinic is a awesome place to get medical care. You know if I ever came that way I would contact you . Your a special lady in my book. Take care, and give a hug from me. I love u Lu Lu, Dr. Hoffman and Dr. Macintyre are with the Cleveland Clinic. Dr Hoffman was recommended by my pulmonologist, B. sees Dr. Hoffman. Dr Macintyre just recently joined the Clinic. I think he is great, he really knows his RP. He is also into research and teaches. If you ever come this way you better let me know!! LOL You can come and stay at my home. Are you having a problem with your doctor? Love, Sandy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 1, 2001 Sandy, Isn't there a new drug out that they can give you for the fatigue? I saw it on tv but I don't remember the name of it. Lu My Rheumy upped my pred. and increased my Cyclosporine by 50mg. a day. He wants to get me up to 200mg. a day. So far the only side effect I've noticed is overwhelming fatigue. As always thanks for your good thoughts and prayers. Love Ya, Sandy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 1, 2001 Sandy, Isn't there a new drug out that they can give you for the fatigue? I saw it on tv but I don't remember the name of it. Lu My Rheumy upped my pred. and increased my Cyclosporine by 50mg. a day. He wants to get me up to 200mg. a day. So far the only side effect I've noticed is overwhelming fatigue. As always thanks for your good thoughts and prayers. Love Ya, Sandy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 1, 2001 Lu, Dr. Hoffman and Dr. Macintyre are with the Cleveland Clinic. Dr Hoffman was recommended by my pulmonologist, B. sees Dr. Hoffman. Dr Macintyre just recently joined the Clinic. I think he is great, he really knows his RP. He is also into research and teaches. If you ever come this way you better let me know!! LOL You can come and stay at my home. Are you having a problem with your doctor? Love, Sandy Hi Sandy, Is Dr. Hoffman at the Cleveland Clinic also? Do you like Dr. MacIntyre? Just curious about the 2 doctors in case I ever came that way. Lu I have not seen Dr Hoffman. I was going to make an appointment with him but found out about Dr. MacIntyre at Cleveland Clinic Westlake.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 Share this post Link to post Share on other sites
Guest guest Report post Posted April 1, 2001 Lu, Dr. Hoffman and Dr. Macintyre are with the Cleveland Clinic. Dr Hoffman was recommended by my pulmonologist, B. sees Dr. Hoffman. Dr Macintyre just recently joined the Clinic. I think he is great, he really knows his RP. He is also into research and teaches. If you ever come this way you better let me know!! LOL You can come and stay at my home. Are you having a problem with your doctor? Love, Sandy Hi Sandy, Is Dr. Hoffman at the Cleveland Clinic also? Do you like Dr. MacIntyre? Just curious about the 2 doctors in case I ever came that way. Lu I have not seen Dr Hoffman. I was going to make an appointment with him but found out about Dr. MacIntyre at Cleveland Clinic Westlake.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 Share this post Link to post Share on other sites
Guest guest Report post Posted April 1, 2001 Lu, Dr. Hoffman and Dr. Macintyre are with the Cleveland Clinic. Dr Hoffman was recommended by my pulmonologist, B. sees Dr. Hoffman. Dr Macintyre just recently joined the Clinic. I think he is great, he really knows his RP. He is also into research and teaches. If you ever come this way you better let me know!! LOL You can come and stay at my home. Are you having a problem with your doctor? Love, Sandy Hi Sandy, Is Dr. Hoffman at the Cleveland Clinic also? Do you like Dr. MacIntyre? Just curious about the 2 doctors in case I ever came that way. Lu I have not seen Dr Hoffman. I was going to make an appointment with him but found out about Dr. MacIntyre at Cleveland Clinic Westlake.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 Share this post Link to post Share on other sites
Guest guest Report post Posted April 2, 2001 Lu, I remember hearing about it. I think it is used by Chemo patients to combat the fatigue but I can't remember the name of it. I'll have to ask my doc. Love, Sandy Sandy, Isn't there a new drug out that they can give you for the fatigue? I saw it on tv but I don't remember the name of it. Lu My Rheumy upped my pred. and increased my Cyclosporine by 50mg. a day. He wants to get me up to 200mg. a day. So far the only side effect I've noticed is overwhelming fatigue. As always thanks for your good thoughts and prayers. Love Ya, Sandy 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 Share this post Link to post Share on other sites
Guest guest Report post Posted April 2, 2001 Lu, I remember hearing about it. I think it is used by Chemo patients to combat the fatigue but I can't remember the name of it. I'll have to ask my doc. Love, Sandy Sandy, Isn't there a new drug out that they can give you for the fatigue? I saw it on tv but I don't remember the name of it. Lu My Rheumy upped my pred. and increased my Cyclosporine by 50mg. a day. He wants to get me up to 200mg. a day. So far the only side effect I've noticed is overwhelming fatigue. As always thanks for your good thoughts and prayers. Love Ya, Sandy 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 Share this post Link to post Share on other sites
Guest guest Report post Posted April 2, 2001 Lu, I remember hearing about it. I think it is used by Chemo patients to combat the fatigue but I can't remember the name of it. I'll have to ask my doc. Love, Sandy Sandy, Isn't there a new drug out that they can give you for the fatigue? I saw it on tv but I don't remember the name of it. Lu My Rheumy upped my pred. and increased my Cyclosporine by 50mg. a day. He wants to get me up to 200mg. a day. So far the only side effect I've noticed is overwhelming fatigue. As always thanks for your good thoughts and prayers. Love Ya, Sandy 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 Share this post Link to post Share on other sites
Guest guest Report post Posted April 2, 2001 Hey Sandy, I will try to figure what it is also. I think it could help you...... I hope your having a great day! Love you! Lu Lu, I remember hearing about it. I think it is used by Chemo patients to combat the fatigue but I can't remember the name of it. I'll have to ask my doc. Love, Sandy Sandy, Isn't there a new drug out that they can give you for the fatigue? I saw it on tv but I don't remember the name of it. Lu My Rheumy upped my pred. and increased my Cyclosporine by 50mg. a day. He wants to get me up to 200mg. a day. So far the only side effect I've noticed is overwhelming fatigue. As always thanks for your good thoughts and prayers. Love Ya, Sandy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 2, 2001 Hey Sandy, I will try to figure what it is also. I think it could help you...... I hope your having a great day! Love you! Lu Lu, I remember hearing about it. I think it is used by Chemo patients to combat the fatigue but I can't remember the name of it. I'll have to ask my doc. Love, Sandy Sandy, Isn't there a new drug out that they can give you for the fatigue? I saw it on tv but I don't remember the name of it. Lu My Rheumy upped my pred. and increased my Cyclosporine by 50mg. a day. He wants to get me up to 200mg. a day. So far the only side effect I've noticed is overwhelming fatigue. As always thanks for your good thoughts and prayers. Love Ya, Sandy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 5, 2001 Are you talking about Procrit - they use this for chemo patients. Can we use it? How will it interact with RP? It's an interesting idea. Judy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 5, 2001 Are you talking about Procrit - they use this for chemo patients. Can we use it? How will it interact with RP? It's an interesting idea. Judy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 5, 2001 Judy, Is Procit what they use for chemo patients to counteract the fatigue. I could sure use some. The cyclosporine & metho combo is really wiping me out. Love Ya, Sandy > Are you talking about Procrit - they use this for chemo patients. Can we use > it? How will it interact with RP? It's an interesting idea. Judy > > 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 Share this post Link to post Share on other sites
Guest guest Report post Posted April 5, 2001 sandy if this is it and it really works i say lets build a pool fill it with the stuff and jump in. and see if we can soke it up through the pores of the skin. i am so tired here lately that i feel like i am going to have to die just to get any energy at all. then i think of you and some of the others that have it much worse than i do and really get ashamed of myself and get up and do something. i guess i just need a good swift kick of something just not sure what. hope this finds you and valerie and your hubby all doing great. please have some stress free and fun filled days and stay well. dawn --- Sandy Catalusci biglou5685@...> wrote: > Judy, > Is Procit what they use for chemo patients to > counteract the fatigue. I > could sure use some. The cyclosporine & metho > combo is really wiping me out. > > Love Ya, > Sandy > > > > > Are you talking about Procrit - they use this for > chemo patients. Can we > use > > it? How will it interact with RP? It's an > interesting idea. Judy > > > > 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 Share this post Link to post Share on other sites
Guest guest Report post Posted April 5, 2001 sandy if this is it and it really works i say lets build a pool fill it with the stuff and jump in. and see if we can soke it up through the pores of the skin. i am so tired here lately that i feel like i am going to have to die just to get any energy at all. then i think of you and some of the others that have it much worse than i do and really get ashamed of myself and get up and do something. i guess i just need a good swift kick of something just not sure what. hope this finds you and valerie and your hubby all doing great. please have some stress free and fun filled days and stay well. dawn --- Sandy Catalusci biglou5685@...> wrote: > Judy, > Is Procit what they use for chemo patients to > counteract the fatigue. I > could sure use some. The cyclosporine & metho > combo is really wiping me out. > > Love Ya, > Sandy > > > > > Are you talking about Procrit - they use this for > chemo patients. Can we > use > > it? How will it interact with RP? It's an > interesting idea. Judy > > > > 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 Share this post Link to post Share on other sites
Guest guest Report post Posted April 11, 2001 Sandy, I don't know, All I know is what I've seen on the TV ads! As always, ask your doctor! Wish I could help. Love, Judy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 11, 2001 Sandy, I don't know, All I know is what I've seen on the TV ads! As always, ask your doctor! Wish I could help. Love, Judy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2001 Hi Sandy, I wanted to come so bad. But my Mom is handicapped so I guess everyone felt it would be best for me to stay here. Bless 's heart, I'm praying she gets a good report on her MRI and from the doctors. Sandy, You know that stress makes our RP worse. You have been under sooo much stress lately no wonder your flaring is worse. Have you called your doctor? Tell him your tired of hurting everyday. Maybe they should try something different with you. Your also in my prayers and thoughts.....I wish I could make things better for you & . Please take care Sandy, and get the rest you need. Love u Lu Lu, Wish you could come too. I'd love to see you. is doing okay. She finished the radiation on Friday. The doctors have to get together before they see her. She also has to have another MRI. Haven't been on the computer much lately. I'm in a real bad flare. You would think with all the meds. I'm on something would help. My nose is so bad and my throat is flaring again. My husband, who usually does not say anything to me about how I look, admitted to me that my nose looks pretty bad. I've been flaring daily for 2 1/2 years now and I'm getting worn out. Just wish something would work. Okay, I'm done complaining now. How have you been feeling? Hope you are having some flare free days. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2001 Hi Sandy, I wanted to come so bad. But my Mom is handicapped so I guess everyone felt it would be best for me to stay here. Bless 's heart, I'm praying she gets a good report on her MRI and from the doctors. Sandy, You know that stress makes our RP worse. You have been under sooo much stress lately no wonder your flaring is worse. Have you called your doctor? Tell him your tired of hurting everyday. Maybe they should try something different with you. Your also in my prayers and thoughts.....I wish I could make things better for you & . Please take care Sandy, and get the rest you need. Love u Lu Lu, Wish you could come too. I'd love to see you. is doing okay. She finished the radiation on Friday. The doctors have to get together before they see her. She also has to have another MRI. Haven't been on the computer much lately. I'm in a real bad flare. You would think with all the meds. I'm on something would help. My nose is so bad and my throat is flaring again. My husband, who usually does not say anything to me about how I look, admitted to me that my nose looks pretty bad. I've been flaring daily for 2 1/2 years now and I'm getting worn out. Just wish something would work. Okay, I'm done complaining now. How have you been feeling? Hope you are having some flare free days. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2001 Hi Sandy, I wanted to come so bad. But my Mom is handicapped so I guess everyone felt it would be best for me to stay here. Bless 's heart, I'm praying she gets a good report on her MRI and from the doctors. Sandy, You know that stress makes our RP worse. You have been under sooo much stress lately no wonder your flaring is worse. Have you called your doctor? Tell him your tired of hurting everyday. Maybe they should try something different with you. Your also in my prayers and thoughts.....I wish I could make things better for you & . Please take care Sandy, and get the rest you need. Love u Lu Lu, Wish you could come too. I'd love to see you. is doing okay. She finished the radiation on Friday. The doctors have to get together before they see her. She also has to have another MRI. Haven't been on the computer much lately. I'm in a real bad flare. You would think with all the meds. I'm on something would help. My nose is so bad and my throat is flaring again. My husband, who usually does not say anything to me about how I look, admitted to me that my nose looks pretty bad. I've been flaring daily for 2 1/2 years now and I'm getting worn out. Just wish something would work. Okay, I'm done complaining now. How have you been feeling? Hope you are having some flare free days. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2001 Lu, Wish you could come too. I'd love to see you. is doing okay. She finished the radiation on Friday. The doctors have to get together before they see her. She also has to have another MRI. Haven't been on the computer much lately. I'm in a real bad flare. You would think with all the meds. I'm on something would help. My nose is so bad and my throat is flaring again. My husband, who usually does not say anything to me about how I look, admitted to me that my nose looks pretty bad. I've been flaring daily for 2 1/2 years now and I'm getting worn out. Just wish something would work. Okay, I'm done complaining now. How have you been feeling? Hope you are having some flare free days. Love Ya, Sandy Hi Sandy, My Dad will be coming back to Cleveland Clinic this week for a checkup for a new kind of pacemaker. I wish I was able to come also. I could look you up. He only plans to be there overnight this time. So that wouldn't give me enough time to do other things. How is doing now? I'm praying she will recover and be just fine. Did they ever talk about doing the helmet radiation with her? How is Sandy feeling? Are your ears still hurting? You would think with all of the medication your doctors have you on, something would stop the pain. Don't they understand you hurt? I wish all doctors could understand this illness better, so we could get the kind of help we all need. Anyway, I just wanted to touch base with you. Please let me know how things are and how you are doing. Take care, Love you Lu 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 Share this post Link to post Share on other sites
Guest guest Report post Posted April 16, 2001 sandy have you talk ed with your dr. about this, isn't there something else he can do to help you get out of this flare, i know some of it is stress realted, but i really do worry about you every day. there has to be a way to do something there just has to me. if nothing else find a new dr. and we will all help you educated him. haven't they been able to find the right combination of meds. for you or what. please, keep fighting, i know you can do it. hang in there, ok. remember we love you very much. this is such a scarey thing. how bad is your throat, do you have a trach, or bi pap, remember love ya and you and yours and in my prayers, dawn Sandy Catalusci wrote: Lu, Wish you could come too. I'd love to see you. is doing okay. She finished the radiation on Friday. The doctors have to get together before they see her. She also has to have another MRI. Haven't been on the computer much lately. I'm in a real bad flare. You would think with all the meds. I'm on something would help. My nose is so bad and my throat is flaring again. My husband, who usually does not say anything to me about how I look, admitted to me that my nose looks pretty bad. I've been flaring daily for 2 1/2 years now and I'm getting worn out. Just wish something would work. Okay, I'm done complaining now. How have you been feeling? Hope you are having some flare free days. Love Ya, Sandy Hi Sandy, My Dad will be coming back to Cleveland Clinic this week for a checkup for a new kind of pacemaker. I wish I was able to come also. I could look you up. He only plans to be there overnight this time. So that wouldn't give me enough time to do other things. How is doing now? I'm praying she will recover and be just fine. Did they ever talk about doing the helmet radiation with her? How is Sandy feeling? Are your ears still hurting? You would think with all of the medication your doctors have you on, something would stop the pain. Don't they understand you hurt? I wish all doctors could understand this illness better, so we could get the kind of help we all need. Anyway, I just wanted to touch base with you. Please let me know how things are and how you are doing. Take care, Love you Lu 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 Share this post Link to post Share on other sites
