Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 I was actually diagnosed by my dermatoligist! And he suggested I try Embrel, so I am now on my 3rd shot. Keeping my fingers crossed. Good luck!! Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2009 Report Share Posted September 30, 2009 I'm curious about the colchine. Do you use it daily? If not, how frequently? Does it stop the inflammation when it's happening or prevent episodes to begin with? I thought this medicine was only used for familial Mediterranean fever, because that specific fever syndrome can cause long term renal failure, which is what the colchine is supposed to help prevent. My secret fear with has always been that, since they don't know a lot about it, that they might find out in the future that it too can cause organ damage due to the body creating antibodies that work against them. Have any of you ever worried about that too, since they don't know a lot about ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2009 Report Share Posted September 30, 2009 I'm curious about the colchine. Do you use it daily? If not, how frequently? Does it stop the inflammation when it's happening or prevent episodes to begin with? I thought this medicine was only used for familial Mediterranean fever, because that specific fever syndrome can cause long term renal failure, which is what the colchine is supposed to help prevent. My secret fear with has always been that, since they don't know a lot about it, that they might find out in the future that it too can cause organ damage due to the body creating antibodies that work against them. Have any of you ever worried about that too, since they don't know a lot about ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 Hello Melina. My son has been on Colchicine for almost a year and we have had great success with it. It took about 2 months for the medicine to kick in fully, which greatly decreased the fever and length. My son has been fever free for 9 months. He never had any side effects, and his blood work he gets done every three months has been coming back perfect. We just recently stopped the colchicine, b/c my son had a T & A and we wanted to see if that would stop his fevers. We didn't want to be on medicine if we didn't have to be. However it was discussed with my son doctor that if the fevers should return there would be no problem putting him back on the colchine. Best of luck... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 Hello Melina. My son has been on Colchicine for almost a year and we have had great success with it. It took about 2 months for the medicine to kick in fully, which greatly decreased the fever and length. My son has been fever free for 9 months. He never had any side effects, and his blood work he gets done every three months has been coming back perfect. We just recently stopped the colchicine, b/c my son had a T & A and we wanted to see if that would stop his fevers. We didn't want to be on medicine if we didn't have to be. However it was discussed with my son doctor that if the fevers should return there would be no problem putting him back on the colchine. Best of luck... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 Hi, My daughter has been on and off colchine for 6. 5yrs. Each timeit is a daily dosing(x2 daily). It is a med that is slowly introduced due to gastro issues. But these issues do disapate. SHe has taken it for the following reasons: Day of DX started incase of FMF; mouth sores(Kastner has seen it be effective for them). And currently she is back on it for her archilles issues. I can say that for a time(maybe 6 mths) it really did help with her ulcers but like everything else with her only for so long. This time it has helped her ankles but her ulcers are back with a HUGE vengence. Yes I worry EVERY DAY about long term with her as she is a very complex and sick little girl. BUT I must remind myself that she has the BEST medical TEAM...and we are truly blessed that NIH has been activly invovled with her for the past 6.5 yrs and that Boston and NIH work well.....not always easy but they do it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 Hi, My daughter has been on and off colchine for 6. 5yrs. Each timeit is a daily dosing(x2 daily). It is a med that is slowly introduced due to gastro issues. But these issues do disapate. SHe has taken it for the following reasons: Day of DX started incase of FMF; mouth sores(Kastner has seen it be effective for them). And currently she is back on it for her archilles issues. I can say that for a time(maybe 6 mths) it really did help with her ulcers but like everything else with her only for so long. This time it has helped her ankles but her ulcers are back with a HUGE vengence. Yes I worry EVERY DAY about long term with her as she is a very complex and sick little girl. BUT I must remind myself that she has the BEST medical TEAM...and we are truly blessed that NIH has been activly invovled with her for the past 6.5 yrs and that Boston and NIH work well.....not always easy but they do it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 , I worry about everything...I'm am nuts over this whole thing...devasted for my son and nervous over thinking about long term effects and when he will or if he will grow out of this!!! I need someone to put my mind at rest, but I just can't get the answers I need. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 the anxiety that accompanies this whole thing is unbearable. every little sign or issue triggers a mad rush of worry. what helps a tiny bit is thinking about how much worse this could be. I keep telling myself that the majority of folks on this board are young - hopefully that's a sign that they do grow out of this. hang in there, you are not reacting any differently than a caring parent who wants the best for their kids. i have found that exercising helps me a lot relative to the stress and anxiety - however it never takes it away completely. every night i come home and my son knows to lift his hair and i kiss his forehead to see if he feels warm. i still poke him with the thermometer all the time to make sure he's not fevering. it's really awful. all i can say is you are not alone and what you're feeling is what we're all feeling. Regards, Nick Handrinos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 the anxiety that accompanies this whole thing is unbearable. every little sign or issue triggers a mad rush of worry. what helps a tiny bit is thinking about how much worse this could be. I keep telling myself that the majority of folks on this board are young - hopefully that's a sign that they do grow out of this. hang in there, you are not reacting any differently than a caring parent who wants the best for their kids. i have found that exercising helps me a lot relative to the stress and anxiety - however it never takes it away completely. every night i come home and my son knows to lift his hair and i kiss his forehead to see if he feels warm. i still poke him with the thermometer all the time to make sure he's not fevering. it's really awful. all i can say is you are not alone and what you're feeling is what we're all feeling. Regards, Nick Handrinos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 the anxiety that accompanies this whole thing is unbearable. every little sign or issue triggers a mad rush of worry. what helps a tiny bit is thinking about how much worse this could be. I keep telling myself that the majority of folks on this board are young - hopefully that's a sign that they do grow out of this. hang in there, you are not reacting any differently than a caring parent who wants the best for their kids. i have found that exercising helps me a lot relative to the stress and anxiety - however it never takes it away completely. every night i come home and my son knows to lift his hair and i kiss his forehead to see if he feels warm. i still poke him with the thermometer all the time to make sure he's not fevering. it's really awful. all i can say is you are not alone and what you're feeling is what we're all feeling. Regards, Nick Handrinos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 I did the same as you when I found out that my son had . He had his tonsils out and he is a normal growing boy that plays football, baseball, soccer, basketball and is in first grade. Did great in kindergarden and so far great in 1st grade. I used to cuddle him and pet him constantly, but I have to admit, I still do a little. But really, he is fine (after T & A) and no signs (cross your fingers and toes) of coming back. Go to the best Dr.s in your area and its ok to go to different kinds to ease your mind. We did, we went to immunoligist, rheumutolgist, and Ear nose and throat drs. The best in Dallas, you can email me anytime and I can tell you all about Cade. Leanne Coldwell Banker Residential 1585 Hwy 77 N. Ste. A Waxahachie, TX 75165 214-914-6851 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 I did the same as you when I found out that my son had . He had his tonsils out and he is a normal growing boy that plays football, baseball, soccer, basketball and is in first grade. Did great in kindergarden and so far great in 1st grade. I used to cuddle him and pet him constantly, but I have to admit, I still do a little. But really, he is fine (after T & A) and no signs (cross your fingers and toes) of coming back. Go to the best Dr.s in your area and its ok to go to different kinds to ease your mind. We did, we went to immunoligist, rheumutolgist, and Ear nose and throat drs. The best in Dallas, you can email me anytime and I can tell you all about Cade. Leanne Coldwell Banker Residential 1585 Hwy 77 N. Ste. A Waxahachie, TX 75165 214-914-6851 Quote Link to comment Share on other sites More sharing options...
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