Guest guest Posted August 27, 2001 Report Share Posted August 27, 2001 Dear Sirs/Mesdames, Heartful thanks for the kind emails regarding my daughter. And for all mails posted - they are really good references for me. I am Moonsung Jun, Korean living in New Zealand with my wife, a daughter and a son. My daughter , Inhae is sick with RP since July, 2000. Yesterday she met her immunologist and got instructions to reduce high dose of Prednisone, eventhough there is some possibilty for her ears and eyes to go worse. Her tracheostomy is in good condition but her ears and eyes are flaring. Her medication mothod (upto last week) was as follows; Prednisone 60mg/day (at 8:00 am) Azathioprine 50mg/day (at 8:00 am) Etidronate 200mg/day (at 10:00 am) Methotrexate 12.5mg/week (at 8:00 am every Friday) Folic Acid 50mg/day (at 8:00 am every Monday) From this week, the method is changed a little ; Prednisone 40mg/day for coming 2 week, then reduce 30,20,15 and 10 mg at 2 weeks interval. Osteo 1000mg/day (at 8:00 am) instead of Etidronate (stopped) She has been suffering pains and getting worse since taking Methotrexate from May this year. These days, she has flares on her ears with pains and her right eye is blood-shot, occasionally lost her vision for a while (usually 10 minutes). These symptoms are severe in every morning then improved at daytime. Her eye doctors could not explain the cause of blood-shot eye and occasional loss of vision. I asked her Immunology Dr. to remedy this situation, even with shock therapy (extremely high dose of injectable Prednsone or Methylprednisolone) but he said always that it's important to keep balance between pain(symptom) and toxicity of medicines, and that her ears are not more important than her life. Considering high dose of Pred for a couple of months, he finally instructed her to reduce Pred, eventhough her current symptom is not so good (actually it's ever her worst condition except when her windpipe was flaring - at that time, she was nearly to die). In April this year, her ear appearance was as good and nice as normal but now the cartilage seems to be collapsed, severely swelled. Her fIaring ears make me sad. Is there no way to save the both? Her Dr. and I wonder why the Methotrexate is not working? She took the MTX since May and it's enough time for it to start working. I really hope somebody answer this question. What might be wrong? Regarding vegan diet, I understand that doctors say there is no scientific evidence for vegan diet to improve the RP, but it is recommended by some RP/Arthritis patients. My reference on vegan diet is http://www.drmcdougall.com/ or http://relapsingpolychondritis.com. I saw that fish oil or seed oil is helpful for RP. How about Noni Juice? It's made of Noni, a tropical fruit. It has a special component, called 'Xeronine". I want to try Noni Juice for my daughter, but am worrying about any unexpected side-effect with her medication. Are there any kind person who has experience with Noni and can answer my question ? I am a marine navigator, that is, a captain of tanker vessels. I have worked for a shipping company as shore staff and also as master. My daughter likes me very much and it seems her symptoms were going worse when I was at sea, departed from home and her. Are there any members who feel or believe the RP flaring is related to the mental condition of patient? I would really appreciate your any idea and comment on my story and questions. Best regards to all members Moonsung Jun ps. Two pictures of my daughter attached. =¢Á.¢Á= ¹è°íÆÄ¿ä~³Ä¿ËÀÌ ¹äÁÖ¼¼¿ä~, ¾ßÈÄ! ÆêÄ£±¸ °øÂ¥·Î ¹ß¸®°¡´Â ¹æ¹ý! ÄûÁ Ç®¸é µÅ~,¾ßÈÄ! ÄûÁî¿Õ ¸®±× Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2001 Report Share Posted August 27, 2001 Dear Sirs/Mesdames, Heartful thanks for the kind emails regarding my daughter. And for all mails posted - they are really good references for me. I am Moonsung Jun, Korean living in New Zealand with my wife, a daughter and a son. My daughter , Inhae is sick with RP since July, 2000. Yesterday she met her immunologist and got instructions to reduce high dose of Prednisone, eventhough there is some possibilty for her ears and eyes to go worse. Her tracheostomy is in good condition but her ears and eyes are flaring. Her medication mothod (upto last week) was as follows; Prednisone 60mg/day (at 8:00 am) Azathioprine 50mg/day (at 8:00 am) Etidronate 200mg/day (at 10:00 am) Methotrexate 12.5mg/week (at 8:00 am every Friday) Folic Acid 50mg/day (at 8:00 am every Monday) From this week, the method is changed a little ; Prednisone 40mg/day for coming 2 week, then reduce 30,20,15 and 10 mg at 2 weeks interval. Osteo 1000mg/day (at 8:00 am) instead of Etidronate (stopped) She has been suffering pains and getting worse since taking Methotrexate from May this year. These days, she has flares on her ears with pains and her right eye is blood-shot, occasionally lost her vision for a while (usually 10 minutes). These symptoms are severe in every morning then improved at daytime. Her eye doctors could not explain the cause of blood-shot eye and occasional loss of vision. I asked her Immunology Dr. to remedy this situation, even with shock therapy (extremely high dose of injectable Prednsone or Methylprednisolone) but he said always that it's important to keep balance between pain(symptom) and toxicity of medicines, and that her ears are not more important than her life. Considering high dose of Pred for a couple of months, he finally instructed her to reduce Pred, eventhough her current symptom is not so good (actually it's ever her worst condition except when her windpipe was flaring - at that time, she was nearly to die). In April this year, her ear appearance was as good and nice as normal but now the cartilage seems to be collapsed, severely swelled. Her fIaring ears make me sad. Is there no way to save the both? Her Dr. and I wonder why the Methotrexate is not working? She took the MTX since May and it's enough time for it to start working. I really hope somebody answer this question. What might be wrong? Regarding vegan diet, I understand that doctors say there is no scientific evidence for vegan diet to improve the RP, but it is recommended by some RP/Arthritis patients. My reference on vegan diet is http://www.drmcdougall.com/ or http://relapsingpolychondritis.com. I saw that fish oil or seed oil is helpful for RP. How about Noni Juice? It's made of Noni, a tropical fruit. It has a special component, called 'Xeronine". I want to try Noni Juice for my daughter, but am worrying about any unexpected side-effect with her medication. Are there any kind person who has experience with Noni and can answer my question ? I am a marine navigator, that is, a captain of tanker vessels. I have worked for a shipping company as shore staff and also as master. My daughter likes me very much and it seems her symptoms were going worse when I was at sea, departed from home and her. Are there any members who feel or believe the RP flaring is related to the mental condition of patient? I would really appreciate your any idea and comment on my story and questions. Best regards to all members Moonsung Jun ps. Two pictures of my daughter attached. =¢Á.¢Á= ¹è°íÆÄ¿ä~³Ä¿ËÀÌ ¹äÁÖ¼¼¿ä~, ¾ßÈÄ! ÆêÄ£±¸ °øÂ¥·Î ¹ß¸®°¡´Â ¹æ¹ý! ÄûÁ Ç®¸é µÅ~,¾ßÈÄ! ÄûÁî¿Õ ¸®±× Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2001 Report Share Posted August 27, 2001 Hi Moonsung, You might want to seek the opinion of Dr. Graham Chiu, a rheumatologist in New Zealand who is quite experienced in using the antibiotic treatment for rheumatic diseases. I do not know if he has any RP patients, however the treatment is similar for most of the various diseases....whether it is lupus, rheumatoid arthritis, scleroderma, etc. The treatment is described in the following sites: www.rheumatic.org www.roadback.org and www.immed.org There is a doctor in the US who has used this treatment for some of his many RP patients. His name is Dr. Trentham and I am confident that Dr. Chiu is aware of Dr. Trentham's work. Dr. Chiu used to have time to contribute to another email group, similar to this one, except it concentrates mostly on the antibiotic treatment. That is where I became " acquainted " with him. (I've heard he likes chocolate!) As for myself, I have been officially diagnosed with dermatomyositis, one of the diseases related to rheumatoid arthritis. In addition, another doctor wonders if I have RP as well. I'm sure I don't know! But I do know that the antibiotic treatment has made a big difference in my recovery. Your daughter's immunologist might be interested in the antibiotic treatment, as it is based on the hypothesis that these diseases are a result of a mycoplasma infection. If he is not interested, I would still pursue this treatment and find someone who will prescribe it for your daughter. If Dr. Chiu is not accessible, here are some other possibilities: Graham Chiu Wakefield Medical Centre, Rintoul St., Wellington, NZ. phone (04) 389-5020. also at: Lower Ground Floor, Karori Mall, Karori, NZ. phone (04) 476-0212. Postal address: P.O. Box 7168, Wellington South. Allan Adair, 307 Kepa Rd., Auckland, NZ. MB ChB Dip Obs NRMZCGP Millhouse Medical Centre, 28 Millhouse Dr, Howick, Auckland, NZ. (09)5374980 fax (09) 5375476 Gibson PO Box 274, Masterton, NZ. (06) 3771250 > > Professor Palmer, Dunedin, NZ (about to retire). Please feel free to ask questions. Oh...you asked about the Noni juice. I have heard of it, but not very favorably, I'm sorry to say. It was discussed on another group and the people who tried it did not find it to be very helpful......but maybe it has helped some. As far as diet is concerned, you might find some helpful suggestions in Dr. Mercola's website at http://www.mercola.com/forms/wellness_condensed.htm Dr. Mercola is also a proponent of the antibiotic therapy. I wish I could take away this disease from your daughter. You obviously love her very much. I have heard that people with rheumatic illnesses do suffer from flares more often when under stress. Perhaps that is why your daughter gets worse when you can't be there. As for her eyes...please have her evaluated by a specialist, hopefully an ophthalmologist. I know there are others here who will have further suggestions. We care a lot for you and your family. Take care, Connie Hache > > Dear Sirs/Mesdames, > > Heartful thanks for the kind emails regarding my daughter. And for all mails posted - they are really good references for me. > > I am Moonsung Jun, Korean living in New Zealand with my wife, a daughter and a son. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2001 Report Share Posted August 27, 2001 Hi Moonsung, You might want to seek the opinion of Dr. Graham Chiu, a rheumatologist in New Zealand who is quite experienced in using the antibiotic treatment for rheumatic diseases. I do not know if he has any RP patients, however the treatment is similar for most of the various diseases....whether it is lupus, rheumatoid arthritis, scleroderma, etc. The treatment is described in the following sites: www.rheumatic.org www.roadback.org and www.immed.org There is a doctor in the US who has used this treatment for some of his many RP patients. His name is Dr. Trentham and I am confident that Dr. Chiu is aware of Dr. Trentham's work. Dr. Chiu used to have time to contribute to another email group, similar to this one, except it concentrates mostly on the antibiotic treatment. That is where I became " acquainted " with him. (I've heard he likes chocolate!) As for myself, I have been officially diagnosed with dermatomyositis, one of the diseases related to rheumatoid arthritis. In addition, another doctor wonders if I have RP as well. I'm sure I don't know! But I do know that the antibiotic treatment has made a big difference in my recovery. Your daughter's immunologist might be interested in the antibiotic treatment, as it is based on the hypothesis that these diseases are a result of a mycoplasma infection. If he is not interested, I would still pursue this treatment and find someone who will prescribe it for your daughter. If Dr. Chiu is not accessible, here are some other possibilities: Graham Chiu Wakefield Medical Centre, Rintoul St., Wellington, NZ. phone (04) 389-5020. also at: Lower Ground Floor, Karori Mall, Karori, NZ. phone (04) 476-0212. Postal address: P.O. Box 7168, Wellington South. Allan Adair, 307 Kepa Rd., Auckland, NZ. MB ChB Dip Obs NRMZCGP Millhouse Medical Centre, 28 Millhouse Dr, Howick, Auckland, NZ. (09)5374980 fax (09) 5375476 Gibson PO Box 274, Masterton, NZ. (06) 3771250 > > Professor Palmer, Dunedin, NZ (about to retire). Please feel free to ask questions. Oh...you asked about the Noni juice. I have heard of it, but not very favorably, I'm sorry to say. It was discussed on another group and the people who tried it did not find it to be very helpful......but maybe it has helped some. As far as diet is concerned, you might find some helpful suggestions in Dr. Mercola's website at http://www.mercola.com/forms/wellness_condensed.htm Dr. Mercola is also a proponent of the antibiotic therapy. I wish I could take away this disease from your daughter. You obviously love her very much. I have heard that people with rheumatic illnesses do suffer from flares more often when under stress. Perhaps that is why your daughter gets worse when you can't be there. As for her eyes...please have her evaluated by a specialist, hopefully an ophthalmologist. I know there are others here who will have further suggestions. We care a lot for you and your family. Take care, Connie Hache > > Dear Sirs/Mesdames, > > Heartful thanks for the kind emails regarding my daughter. And for all mails posted - they are really good references for me. > > I am Moonsung Jun, Korean living in New Zealand with my wife, a daughter and a son. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Hello Moonsung Jun Sorry that your daughter has RP! Glad that you found this group. They are the greatest group of people you will ever get the chance to meet. They are all so helpful and care so much about each other. Thanks for the photos of your daughter she is very beautiful. Hope that the Doctors find a treatment that will work for her. How long did you say she has had RP? My name is Glenda and I live in the USA in Oregon. I am 44 and have had RP for 8 yrs. I lead a pretty normal like and RP is pretty much under control with the medications that I take. I take Imuran, vitamins, calcium and pred only when I flare. Hope you get some of the answers you need! Lots of Love Glenda ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.273 / Virus Database: 143 - Release Date: 8/16/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Hello Moonsung Jun Sorry that your daughter has RP! Glad that you found this group. They are the greatest group of people you will ever get the chance to meet. They are all so helpful and care so much about each other. Thanks for the photos of your daughter she is very beautiful. Hope that the Doctors find a treatment that will work for her. How long did you say she has had RP? My name is Glenda and I live in the USA in Oregon. I am 44 and have had RP for 8 yrs. I lead a pretty normal like and RP is pretty much under control with the medications that I take. I take Imuran, vitamins, calcium and pred only when I flare. Hope you get some of the answers you need! Lots of Love Glenda ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.273 / Virus Database: 143 - Release Date: 8/16/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Moonsung Jun, I was on Methtrexate for 2 1/2 years and went off of it 7 weeks ago. It did not work for me. We are all different and what works for some does not work for others. I am now on Cytoxan. Stress can cause an Rp. flare. Sorry to hear your daughter is having so much difficulty. Sandy ----- Original Message ----- Dear Sirs/Mesdames, Heartful thanks for the kind emails regarding my daughter. And for all mails posted - they are really good references for me. I am Moonsung Jun, Korean living in New Zealand with my wife, a daughter and a son. My daughter , Inhae is sick with RP since July, 2000. Yesterday she met her immunologist and got instructions to reduce high dose of Prednisone, eventhough there is some possibilty for her ears and eyes to go worse. Her tracheostomy is in good condition but her ears and eyes are flaring. Her medication mothod (upto last week) was as follows; Prednisone 60mg/day (at 8:00 am) Azathioprine 50mg/day (at 8:00 am) Etidronate 200mg/day (at 10:00 am) Methotrexate 12.5mg/week (at 8:00 am every Friday) Folic Acid 50mg/day (at 8:00 am every Monday) From this week, the method is changed a little ; Prednisone 40mg/day for coming 2 week, then reduce 30,20,15 and 10 mg at 2 weeks interval. Osteo 1000mg/day (at 8:00 am) instead of Etidronate (stopped) She has been suffering pains and getting worse since taking Methotrexate from May this year. These days, she has flares on her ears with pains and her right eye is blood-shot, occasionally lost her vision for a while (usually 10 minutes). These symptoms are severe in every morning then improved at daytime. Her eye doctors could not explain the cause of blood-shot eye and occasional loss of vision. I asked her Immunology Dr. to remedy this situation, even with shock therapy (extremely high dose of injectable Prednsone or Methylprednisolone) but he said always that it's important to keep balance between pain(symptom) and toxicity of medicines, and that her ears are not more important than her life. Considering high dose of Pred for a couple of months, he finally instructed her to reduce Pred, eventhough her current symptom is not so good (actually it's ever her worst condition except when her windpipe was flaring - at that time, she was nearly to die). In April this year, her ear appearance was as good and nice as normal but now the cartilage seems to be collapsed, severely swelled. Her fIaring ears make me sad. Is there no way to save the both? Her Dr. and I wonder why the Methotrexate is not working? She took the MTX since May and it's enough time for it to start working. I really hope somebody answer this question. What might be wrong? Regarding vegan diet, I understand that doctors say there is no scientific evidence for vegan diet to improve the RP, but it is recommended by some RP/Arthritis patients. My reference on vegan diet is http://www.drmcdougall.com/ or http://relapsingpolychondritis.com. I saw that fish oil or seed oil is helpful for RP. How about Noni Juice? It's made of Noni, a tropical fruit. It has a special component, called 'Xeronine". I want to try Noni Juice for my daughter, but am worrying about any unexpected side-effect with her medication. Are there any kind person who has experience with Noni and can answer my question ? I am a marine navigator, that is, a captain of tanker vessels. I have worked for a shipping company as shore staff and also as master. My daughter likes me very much and it seems her symptoms were going worse when I was at sea, departed from home and her. Are there any members who feel or believe the RP flaring is related to the mental condition of patient? I would really appreciate your any idea and comment on my story and questions. Best regards to all members Moonsung Jun ps. Two pictures of my daughter attached. =¢Á.¢Á= ¹è°íÆÄ¿ä~³Ä¿ËÀÌ ¹äÁÖ¼¼¿ä~, ¾ßÈÄ! ÆêÄ£±¸°øÂ¥·Î ¹ß¸®°¡´Â ¹æ¹ý! ÄûÁ Ç®¸é µÅ~,¾ßÈÄ! ÄûÁî¿Õ ¸®±× 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 August 28, 2001 Report Share Posted August 28, 2001 Moonsung Jun, I was on Methtrexate for 2 1/2 years and went off of it 7 weeks ago. It did not work for me. We are all different and what works for some does not work for others. I am now on Cytoxan. Stress can cause an Rp. flare. Sorry to hear your daughter is having so much difficulty. Sandy ----- Original Message ----- Dear Sirs/Mesdames, Heartful thanks for the kind emails regarding my daughter. And for all mails posted - they are really good references for me. I am Moonsung Jun, Korean living in New Zealand with my wife, a daughter and a son. My daughter , Inhae is sick with RP since July, 2000. Yesterday she met her immunologist and got instructions to reduce high dose of Prednisone, eventhough there is some possibilty for her ears and eyes to go worse. Her tracheostomy is in good condition but her ears and eyes are flaring. Her medication mothod (upto last week) was as follows; Prednisone 60mg/day (at 8:00 am) Azathioprine 50mg/day (at 8:00 am) Etidronate 200mg/day (at 10:00 am) Methotrexate 12.5mg/week (at 8:00 am every Friday) Folic Acid 50mg/day (at 8:00 am every Monday) From this week, the method is changed a little ; Prednisone 40mg/day for coming 2 week, then reduce 30,20,15 and 10 mg at 2 weeks interval. Osteo 1000mg/day (at 8:00 am) instead of Etidronate (stopped) She has been suffering pains and getting worse since taking Methotrexate from May this year. These days, she has flares on her ears with pains and her right eye is blood-shot, occasionally lost her vision for a while (usually 10 minutes). These symptoms are severe in every morning then improved at daytime. Her eye doctors could not explain the cause of blood-shot eye and occasional loss of vision. I asked her Immunology Dr. to remedy this situation, even with shock therapy (extremely high dose of injectable Prednsone or Methylprednisolone) but he said always that it's important to keep balance between pain(symptom) and toxicity of medicines, and that her ears are not more important than her life. Considering high dose of Pred for a couple of months, he finally instructed her to reduce Pred, eventhough her current symptom is not so good (actually it's ever her worst condition except when her windpipe was flaring - at that time, she was nearly to die). In April this year, her ear appearance was as good and nice as normal but now the cartilage seems to be collapsed, severely swelled. Her fIaring ears make me sad. Is there no way to save the both? Her Dr. and I wonder why the Methotrexate is not working? She took the MTX since May and it's enough time for it to start working. I really hope somebody answer this question. What might be wrong? Regarding vegan diet, I understand that doctors say there is no scientific evidence for vegan diet to improve the RP, but it is recommended by some RP/Arthritis patients. My reference on vegan diet is http://www.drmcdougall.com/ or http://relapsingpolychondritis.com. I saw that fish oil or seed oil is helpful for RP. How about Noni Juice? It's made of Noni, a tropical fruit. It has a special component, called 'Xeronine". I want to try Noni Juice for my daughter, but am worrying about any unexpected side-effect with her medication. Are there any kind person who has experience with Noni and can answer my question ? I am a marine navigator, that is, a captain of tanker vessels. I have worked for a shipping company as shore staff and also as master. My daughter likes me very much and it seems her symptoms were going worse when I was at sea, departed from home and her. Are there any members who feel or believe the RP flaring is related to the mental condition of patient? I would really appreciate your any idea and comment on my story and questions. Best regards to all members Moonsung Jun ps. Two pictures of my daughter attached. =¢Á.¢Á= ¹è°íÆÄ¿ä~³Ä¿ËÀÌ ¹äÁÖ¼¼¿ä~, ¾ßÈÄ! ÆêÄ£±¸°øÂ¥·Î ¹ß¸®°¡´Â ¹æ¹ý! ÄûÁ Ç®¸é µÅ~,¾ßÈÄ! ÄûÁî¿Õ ¸®±× 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 August 28, 2001 Report Share Posted August 28, 2001 .. Are there any members who feel or believe the RP flaring is related to the mental condition of patient? I would really appreciate your any idea and comment on my story and questions. Best regards to all members Moonsung Jun Hi Moonsung Jun, I feel like any kind of stress makes Rp worse or tend to flare. Or it does for me if I am in a stressful condition, a couple of day later i will be flaring. Also the high doses of pred are hard on the body and the doctors don't stress this enough. I hope they can control your daughter's with less steriod use. Know that she is in our prayers, Love, Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 .. Are there any members who feel or believe the RP flaring is related to the mental condition of patient? I would really appreciate your any idea and comment on my story and questions. Best regards to all members Moonsung Jun Hi Moonsung Jun, I feel like any kind of stress makes Rp worse or tend to flare. Or it does for me if I am in a stressful condition, a couple of day later i will be flaring. Also the high doses of pred are hard on the body and the doctors don't stress this enough. I hope they can control your daughter's with less steriod use. Know that she is in our prayers, Love, Lu Quote Link to comment Share on other sites More sharing options...
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