Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 Dear Sirs/Mesdames, I received many emails from members and the letters were very kind and informative. I would like to express my heartful thanks to all of members. My daughter, Inhae is not so well while tapering Predi down to 40 from 60 mg/day. Her ear and eye inflamation is going worse and she feels pains on her ears, eyes and jaws.( Blood test result shows ESR 49 mm/hr and C-reactive protein 30 mg/L, which are 3 to 4 times of normal indications). Her Rhummy increased the dose of Azathioprine to 100mg/day to compensate the reduced Predi, while keeping 12.5mg/week of Methotraxate, 5mg/week of Folic Acid and 1000mg/day of Osteo. Regarding her blood-shot eyes, estimated as Scleritis, some local steroid is said to be injected to her eyes at next week. A new symptom is jaw-joint pain, which makes her to have some difficulties to chew foods for the last 3 days. I am worrying that RP starts to attack the cartilage of her jaw-joints. Are there any members who have experienced serious jaw-joint inflamation? Can it cause a severe damage of jaw-joint function? If there is a moderate possibility to go worse, I will try to arrange an earlier meeting with her Rhumy, which is currently scheduled on 17th Sept. Or does she need to stop tapering her Predi and to increase the dose to control this situation right now ? Awaiting members' kind advices and sharing your precious experiences. Best regards Moonsung Jun ´ëÇÑÇ×°ø ±¹³»¼± 10% ÇÒÀÎ Çà»ç~, ¾ßÈÄ! ¿©Çà ÀÎÅÍ³Ý ½ºÅ¸µÇ°í, ÇØ¿Ü ¿©Çà±îÁö~ ,¾ßÈÄ! À¥ÀÚÅ° À̺¥Æ® Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 Dear Sirs/Mesdames, I received many emails from members and the letters were very kind and informative. I would like to express my heartful thanks to all of members. My daughter, Inhae is not so well while tapering Predi down to 40 from 60 mg/day. Her ear and eye inflamation is going worse and she feels pains on her ears, eyes and jaws.( Blood test result shows ESR 49 mm/hr and C-reactive protein 30 mg/L, which are 3 to 4 times of normal indications). Her Rhummy increased the dose of Azathioprine to 100mg/day to compensate the reduced Predi, while keeping 12.5mg/week of Methotraxate, 5mg/week of Folic Acid and 1000mg/day of Osteo. Regarding her blood-shot eyes, estimated as Scleritis, some local steroid is said to be injected to her eyes at next week. A new symptom is jaw-joint pain, which makes her to have some difficulties to chew foods for the last 3 days. I am worrying that RP starts to attack the cartilage of her jaw-joints. Are there any members who have experienced serious jaw-joint inflamation? Can it cause a severe damage of jaw-joint function? If there is a moderate possibility to go worse, I will try to arrange an earlier meeting with her Rhumy, which is currently scheduled on 17th Sept. Or does she need to stop tapering her Predi and to increase the dose to control this situation right now ? Awaiting members' kind advices and sharing your precious experiences. Best regards Moonsung Jun ´ëÇÑÇ×°ø ±¹³»¼± 10% ÇÒÀÎ Çà»ç~, ¾ßÈÄ! ¿©Çà ÀÎÅÍ³Ý ½ºÅ¸µÇ°í, ÇØ¿Ü ¿©Çà±îÁö~ ,¾ßÈÄ! À¥ÀÚÅ° À̺¥Æ® Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 Moonsung Jun So sorry to hear that your daughter is having such a rough time of it. In my opinion only I think she maybe tapering off the pred too soon. The Imuran must take affect prior to the tapering of the pred. This is what they did with me when I started the Imuran. Yes there is cartilage in the jaw, so yes RP can affect things there too. I know how hard it is for me to deal with all the things that RP does to me. It must be double hard to watch your child suffer with it. I will be sending good thoughts and prayers your families way that things will start turning around and will be easier for you to cope with. Please keep us posted. It is always good to hear from everyone good or bad news. If you want to vent we are here for you. Lots of Love Glenda ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.277 / Virus Database: 146 - Release Date: 9/5/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 Moonsung Jun So sorry to hear that your daughter is having such a rough time of it. In my opinion only I think she maybe tapering off the pred too soon. The Imuran must take affect prior to the tapering of the pred. This is what they did with me when I started the Imuran. Yes there is cartilage in the jaw, so yes RP can affect things there too. I know how hard it is for me to deal with all the things that RP does to me. It must be double hard to watch your child suffer with it. I will be sending good thoughts and prayers your families way that things will start turning around and will be easier for you to cope with. Please keep us posted. It is always good to hear from everyone good or bad news. If you want to vent we are here for you. Lots of Love Glenda ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.277 / Virus Database: 146 - Release Date: 9/5/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 mosung, My 3 children have had and still have join pain . execpt médications the best we find for their is to limited milk and all foods with milk. qt<hhey are young, so they never had severe dmge to their joins. Coralie is 14 years old now and she' has been still since 12 year. Benjmin is 11 years old and he has been ill since 3 years. Nicolas is 18 years old nd he has been (the less) ill since 2 years Valérie is 23 years old and she's fine HURRA!!!!! (lol) friendly yours a french mother Marie-PIa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 mosung, My 3 children have had and still have join pain . execpt médications the best we find for their is to limited milk and all foods with milk. qt<hhey are young, so they never had severe dmge to their joins. Coralie is 14 years old now and she' has been still since 12 year. Benjmin is 11 years old and he has been ill since 3 years. Nicolas is 18 years old nd he has been (the less) ill since 2 years Valérie is 23 years old and she's fine HURRA!!!!! (lol) friendly yours a french mother Marie-PIa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Hello Moonsung Jun, In my opinion (and that's all it is) she should NOT be going down on the pred if she is flaring. I do think she is going down on it much too fast too. She should only be going down 10 mgs. at a time, not 20 mgs at a time and if she starts to flare when she does go down, then her doctor should go back up on it and wait until the flare has stopped. She maybe could go up to 150 mgs. on the Azathioprine too. That's what dose I was on and it worked too good. Please talk to her doctor about decreasing the Pred so fast. She can't take that much of a decrease. That's why she is having problems again. I hope this helped, and good luck!! W >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> My daughter, Inhae is not so well while tapering Predi down to 40 from 60 mg/day. Her ear and eye inflamation is going worse and she feels pains on her ears, eyes and jaws.( Blood test result shows ESR 49 mm/hr and C-reactive protein 30 mg/L, which are 3 to 4 times of normal indications). Her Rhummy increased the dose of Azathioprine to 100mg/day to compensate the reduced Predi, while keeping 12.5mg/week of Methotraxate, 5mg/week of Folic Acid and 1000mg/day of Osteo. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Hello Moonsung Jun, In my opinion (and that's all it is) she should NOT be going down on the pred if she is flaring. I do think she is going down on it much too fast too. She should only be going down 10 mgs. at a time, not 20 mgs at a time and if she starts to flare when she does go down, then her doctor should go back up on it and wait until the flare has stopped. She maybe could go up to 150 mgs. on the Azathioprine too. That's what dose I was on and it worked too good. Please talk to her doctor about decreasing the Pred so fast. She can't take that much of a decrease. That's why she is having problems again. I hope this helped, and good luck!! W >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> My daughter, Inhae is not so well while tapering Predi down to 40 from 60 mg/day. Her ear and eye inflamation is going worse and she feels pains on her ears, eyes and jaws.( Blood test result shows ESR 49 mm/hr and C-reactive protein 30 mg/L, which are 3 to 4 times of normal indications). Her Rhummy increased the dose of Azathioprine to 100mg/day to compensate the reduced Predi, while keeping 12.5mg/week of Methotraxate, 5mg/week of Folic Acid and 1000mg/day of Osteo. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Marie Pia, It's so good to see you post again... You and your children are always in my thoughts... How are they doing now?? I hope there is some improvement... Please keep posting when you can and let us know how you and the children are... hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 In a message dated 9/7/01 4:47:34 PM Pacific Daylight Time, junisung@... writes: << A new symptom is jaw-joint pain, which makes her to have some difficulties to chew foods for the last 3 days. I am worrying that RP starts to attack the cartilage of her jaw-joints. >> Moonsung Jun, I also have jaw joint pain... I have had this for over 20 years... Don't know if it was connected to the RP or not in my case... I had my jaw xrayed about 8 years ago and they told me that I didn't have any cartilage in my jaws at all... Told me that they could do physical therapy if the pain got too bad, other than that, just eat soft foods and try not to talk too much. LOl I'm so sorry that you daughter has to go through all of this at such a young age.. Please know that she is in my thoughts and prayers along with you and your family. Clauidia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Marie Pia, It's so good to see you post again... You and your children are always in my thoughts... How are they doing now?? I hope there is some improvement... Please keep posting when you can and let us know how you and the children are... hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 In a message dated 9/7/01 4:47:34 PM Pacific Daylight Time, junisung@... writes: << A new symptom is jaw-joint pain, which makes her to have some difficulties to chew foods for the last 3 days. I am worrying that RP starts to attack the cartilage of her jaw-joints. >> Moonsung Jun, I also have jaw joint pain... I have had this for over 20 years... Don't know if it was connected to the RP or not in my case... I had my jaw xrayed about 8 years ago and they told me that I didn't have any cartilage in my jaws at all... Told me that they could do physical therapy if the pain got too bad, other than that, just eat soft foods and try not to talk too much. LOl I'm so sorry that you daughter has to go through all of this at such a young age.. Please know that she is in my thoughts and prayers along with you and your family. Clauidia Quote Link to comment Share on other sites More sharing options...
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