Guest guest Posted June 25, 2007 Report Share Posted June 25, 2007 Does anyone out there have Wegener's and used LDN for treating it? Is it working for you? My daughter's best friend has been suffering for 10 years and is presently now in remission again. We are trying to get information for her. Thanks! Wanda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 Hi, I have WG too. I started LDN in August of 2008. I had one relapse or infection while being on LDN. I am going to start LDN back this weekend. I am going to give it another try. My doctors dont know that I am taking this medication. It think that it would very beneficial for him to try. How long has he had WG and what areas besides the kidneys are involved? WG has affected my sinuses, lungs, tear ducts and hearing. My kidneys have been damaged, but I still normal kidney function. Of course, that would make limited WG. If you need anymore information just let me know.Best Wishes,aFrom: nschertler <nschertler@...>low dose naltrexone Sent: Tuesday, January 13, 2009 3:11:44 PMSubject: [low dose naltrexone] Wegener's Granulomatosis Hi I am new to this group. In fact I am new to any group like this so if I am doing something wrong, I apologize in advance. My 85 year old father has Wegener's Granulomatosis. He went through a year of chemo and prednizone, and the disease is now in remission. About 3 weeks ago his nephrologist prescribed methotrexate to help keep the disease in remission as there is a high relapse rate with this disease. The problem is that the methotrexate is knocking him on his butt. Prior to his getting this disease he was in remarkable health. Now he has a doctor for just about every organ. Does anyone in this group have any experience w/ LDN and Wegener's? The one article on the home page is interesting, but I suspect it will take more than one testimonial to convince his doctors to give this a try. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 > > Hi, I have WG too. I started LDN in August of 2008. I had one relapse or infection while being on LDN. I am going to start LDN back this weekend. I am going to give it another try. My doctors dont know that I am taking this medication. It think that it would very beneficial for him to try. How long has he had WG and what areas besides the kidneys are involved? WG has affected my sinuses, lungs, tear ducts and hearing. My kidneys have been damaged, but I still normal kidney function. Of course, that would make limited WG. If you need anymore information just let me know. > > Best Wishes, > a > > > Hi a. thanks for this post. My Dad's WG has mostly affected his kidneys. While he has had some permanent kidney damage, they are stable and don't require, and have never required dialysis. The WG first manifested itself in is sinuses, a hoarse voice,elevated SED rate and fatigue. But his sinuses don't seem to be a problem anymore. He was on chemo for a year and had his last chemo in july 08. since then he has been on .05 mg of prednisone every other day. At the urging of his rheumatoligist he started Methotrexate in December. this is proving to be a challenge. They tried him on CElll cept, but he said he would rather go back to IV chemo as the cell cept made him feel so bad. His Nephrologist is the DR who is the one who is prescribing the drugs. given the ton of other drugs he is taking I hesitate to try something that the docs are not aware of. Please let me know how the LDN works for you when you start back up. Thanks a lot. > > ________________________________ > From: nschertler <nschertler@...> > low dose naltrexone > Sent: Tuesday, January 13, 2009 3:11:44 PM > Subject: [low dose naltrexone] Wegener's Granulomatosis > > > Hi I am new to this group. In fact I am new to any group like this so > if I am doing something wrong, I apologize in advance. > > My 85 year old father has Wegener's Granulomatosis. He went through a > year of chemo and prednizone, and the disease is now in remission. > > About 3 weeks ago his nephrologist prescribed methotrexate to help > keep the disease in remission as there is a high relapse rate with > this disease. The problem is that the methotrexate is knocking him on > his butt. Prior to his getting this disease he was in remarkable > health. Now he has a doctor for just about every organ. Does anyone in > this group have any experience w/ LDN and Wegener's? The one article > on the home page is interesting, but I suspect it will take more than > one testimonial to convince his doctors to give this a try. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 I will certainly keep you posted on the outcome, . I was diagnosed in October of 2000. I have been on oral cytoxan, IV cytoxan, methotrexate, Imuran, Cellcept, and Remicade and I still can't sustain a remission. I would respond to the medicine for a short period of time and then another flare would start the whole process all over again. There are not that many people who have WG in the group. If I am not mistakened, I really am on the only one. So, if I see someone with Wegeners granulomatosis in the subject line that makes me feel better because I can relate better to someone who has the same thing as I do. Cellcept did not work for me either. I get my LDN script from a doctor during phone consultation with a in PA. I have to do what I have to do. I hate to leave them out of the loop like that, but they really want look into it. Thats that. I hope your dad starts to feel better. I am just waiting on the pharmacy to mix this up and put it in the mail. I would like to get this by the weekend because of the holiday that we have coming up this Monday. You take care and I will pray for your dad and your whole family, .Best Wishes,a From: nschertler <nschertler@...>low dose naltrexone Sent: Wednesday, January 14, 2009 11:21:03 AMSubject: [low dose naltrexone] Re: Wegener's Granulomatosis > > Hi, I have WG too. I started LDN in August of 2008. I had one relapse or infection while being on LDN. I am going to start LDN back this weekend. I am going to give it another try. My doctors dont know that I am taking this medication. It think that it would very beneficial for him to try. How long has he had WG and what areas besides the kidneys are involved? WG has affected my sinuses, lungs, tear ducts and hearing. My kidneys have been damaged, but I still normal kidney function. Of course, that would make limited WG. If you need anymore information just let me know. > > Best Wishes, > a > > > Hi a. thanks for this post. My Dad's WG has mostly affected his kidneys. While he has had some permanent kidney damage, they are stable and don't require, and have never required dialysis. The WG first manifested itself in is sinuses, a hoarse voice,elevated SED rate and fatigue. But his sinuses don't seem to be a problem anymore. He was on chemo for a year and had his last chemo in july 08. since then he has been on .05 mg of prednisone every other day. At the urging of his rheumatoligist he started Methotrexate in December. this is proving to be a challenge. They tried him on CElll cept, but he said he would rather go back to IV chemo as the cell cept made him feel so bad. His Nephrologist is the DR who is the one who is prescribing the drugs. given the ton of other drugs he is taking I hesitate to try something that the docs are not aware of. Please let me know how the LDN works for you when you start back up. Thanks a lot. > > ____________ _________ _________ __ > From: nschertler <nschertler@ ...> > low dose naltrexone > Sent: Tuesday, January 13, 2009 3:11:44 PM > Subject: [low dose naltrexone] Wegener's Granulomatosis > > > Hi I am new to this group. In fact I am new to any group like this so > if I am doing something wrong, I apologize in advance. > > My 85 year old father has Wegener's Granulomatosis. He went through a > year of chemo and prednizone, and the disease is now in remission. > > About 3 weeks ago his nephrologist prescribed methotrexate to help > keep the disease in remission as there is a high relapse rate with > this disease. The problem is that the methotrexate is knocking him on > his butt. Prior to his getting this disease he was in remarkable > health. Now he has a doctor for just about every organ. Does anyone in > this group have any experience w/ LDN and Wegener's? The one article > on the home page is interesting, but I suspect it will take more than > one testimonial to convince his doctors to give this a try. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2009 Report Share Posted January 18, 2009 Hi a, thanks for sharing your story. I am so sorry that you are having such a hard time keeping the WG in remission. I am sure it is hard to take pills that you know will make you feel bad like Metho and prednisone, in the hopes that you won't get sicker and need even higher doses of the stuff. That and the fact that the side effects of all the drugs are similar to the symptoms of the disease. Did you feel better when you were on the LDN earlier? I really hope the LDN works for you...both for your sake and selfishly. Thanks again for you support, I am sorry you couldn't get more support from your doctors.. I fear that we will receive the same resistance from my dad's Drs. all the best, low dose naltrexone , a Nettles <paulnet78@...> wrote: > > I will certainly keep you posted on the outcome, . I was diagnosed in October of 2000. I have been on oral cytoxan, IV cytoxan, methotrexate, Imuran, Cellcept, and Remicade and I still can't sustain a remission. I would respond to the medicine for a short period of time and then another flare would start the whole process all over again. There are not that many people who have WG in the group. If I am not mistakened, I really am on the only one. So, if I see someone with Wegeners granulomatosis in the subject line that makes me feel better because I can relate better to someone who has the same thing as I do. Cellcept did not work for me either. I get my LDN script from a doctor during phone consultation with a in PA. I have to do what I have to do. I hate to leave them out of the loop like that, but they really want look into it. Thats that. I hope your dad starts to feel better. I am just waiting on the pharmacy to mix this up and put it in the > mail. I would like to get this by the weekend because of the holiday that we have coming up this Monday. You take care and I will pray for your dad and your whole family, . > > Best Wishes, > a > > > > > ________________________________ > From: nschertler <nschertler@...> > low dose naltrexone > Sent: Wednesday, January 14, 2009 11:21:03 AM > Subject: [low dose naltrexone] Re: Wegener's Granulomatosis > > > > > > > Hi, I have WG too. I started LDN in August of 2008. I had one > relapse or infection while being on LDN. I am going to start LDN back > this weekend. I am going to give it another try. My doctors dont know > that I am taking this medication. It think that it would very > beneficial for him to try. How long has he had WG and what areas > besides the kidneys are involved? WG has affected my sinuses, lungs, > tear ducts and hearing. My kidneys have been damaged, but I still > normal kidney function. Of course, that would make limited WG. If you > need anymore information just let me know. > > > > Best Wishes, > > a > > > > > > Hi a. thanks for this post. My Dad's WG has mostly affected his > kidneys. While he has had some permanent kidney damage, they are > stable and don't require, and have never required dialysis. The WG > first manifested itself in is sinuses, a hoarse voice,elevated SED > rate and fatigue. But his sinuses don't seem to be a problem anymore. > He was on chemo for a year and had his last chemo in july 08. since > then he has been on .05 mg of prednisone every other day. At the > urging of his rheumatoligist he started Methotrexate in December. > this is proving to be a challenge. They tried him on CElll cept, but > he said he would rather go back to IV chemo as the cell cept made him > feel so bad. His Nephrologist is the DR who is the one who is > prescribing the drugs. > given the ton of other drugs he is taking I hesitate to try something > that the docs are not aware of. > > Please let me know how the LDN works for you when you start back up. > > Thanks a lot. > > > > ____________ _________ _________ __ > > From: nschertler <nschertler@ ...> > > low dose naltrexone > > Sent: Tuesday, January 13, 2009 3:11:44 PM > > Subject: [low dose naltrexone] Wegener's Granulomatosis > > > > > > Hi I am new to this group. In fact I am new to any group like this so > > if I am doing something wrong, I apologize in advance. > > > > My 85 year old father has Wegener's Granulomatosis. He went through a > > year of chemo and prednizone, and the disease is now in remission. > > > > About 3 weeks ago his nephrologist prescribed methotrexate to help > > keep the disease in remission as there is a high relapse rate with > > this disease. The problem is that the methotrexate is knocking him on > > his butt. Prior to his getting this disease he was in remarkable > > health. Now he has a doctor for just about every organ. Does anyone in > > this group have any experience w/ LDN and Wegener's? The one article > > on the home page is interesting, but I suspect it will take more than > > one testimonial to convince his doctors to give this a try. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2009 Report Share Posted January 18, 2009 , I received my liquid LDN yesterday. I am so happy. Yes, when I was on it earlier, it help tremendously. My sed rate had gone from 30 something to 13 and this was in September. I had caught a Staph infection in the sinuses. Every time I get an infection in that area, it isalways hard for me to recover from them. They do all kinds of cultures and they never come back fungal and then again they sometimes do. It is always bacterial but i can't seem to respond to the medications that they test me for. At this time, I am inhaling meds through sinus nebulizer. I inhale Betamethasone, Vancomycin, Fluconazole, Mucamist. Do I see any change? Not really. I just take it because they said take it. I do feel the difference with the Betamethasone. It is just like prednisone. With me inhaling through the nose that is direct contac and better for the body. I think that I had some candida issues when I started LDN the last time. I am addressing those right now. I am following the anti-candida diet. It is hard but I am doing it because I want LDN to work me. It is the last resort until GOD shows me something else. I feel that he showed me this, so this may be all I need once I detox and get my body where it needs to be. How was your dad feeling today? I feel good. I have a little sinus pressure but other than that I am okay. I have no sense of smell. I am hoping within a week or so the inflammation in the sinues will have decreased, and I can smell again. I have not discussed this with my rheumy because I am not due to see him until Feb 12. I did discuss this with my pulmonologist and he said that it makes sense, but there was not enough information supporting WG. I did not tell him that I was already taking the medicine. I just shrugged and said okay. He told me when I go to Shands talk it over with them, since that was more in their field. Oh yeah, my lung doctor also said to keep working on him about the LDN. It would save me a lot of phone consultation fees if he decided to call in a script for me. If it works like it did in the beginning, it would be more than worth it. I am so glad that you decided to check on me. I was going to email you next week once I got the LDN back in the system. I have been off of it every since the beginning of December. I will keep you posted as to how I am doing.Best Wishes,aFrom: nschertler <nschertler@...>low dose naltrexone Sent: Saturday, January 17, 2009 11:55:11 PMSubject: [low dose naltrexone] Re: Wegener's Granulomatosis Hi a, thanks for sharing your story. I am so sorry that you are having such a hard time keeping the WG in remission. I am sure it is hard to take pills that you know will make you feel bad like Metho and prednisone, in the hopes that you won't get sicker and need even higher doses of the stuff. That and the fact that the side effects of all the drugs are similar to the symptoms of the disease. Did you feel better when you were on the LDN earlier? I really hope the LDN works for you...both for your sake and selfishly. Thanks again for you support, I am sorry you couldn't get more support from your doctors.. I fear that we will receive the same resistance from my dad's Drs. all the best, low dose naltrexone, a Nettles <paulnet78@. ..> wrote: > > I will certainly keep you posted on the outcome, . I was diagnosed in October of 2000. I have been on oral cytoxan, IV cytoxan, methotrexate, Imuran, Cellcept, and Remicade and I still can't sustain a remission. I would respond to the medicine for a short period of time and then another flare would start the whole process all over again. There are not that many people who have WG in the group. If I am not mistakened, I really am on the only one. So, if I see someone with Wegeners granulomatosis in the subject line that makes me feel better because I can relate better to someone who has the same thing as I do. Cellcept did not work for me either. I get my LDN script from a doctor during phone consultation with a in PA. I have to do what I have to do. I hate to leave them out of the loop like that, but they really want look into it. Thats that. I hope your dad starts to feel better. I am just waiting on the pharmacy to mix this up and put it in the > mail. I would like to get this by the weekend because of the holiday that we have coming up this Monday. You take care and I will pray for your dad and your whole family, . > > Best Wishes, > a > > > > > ____________ _________ _________ __ > From: nschertler <nschertler@ ...> > low dose naltrexone > Sent: Wednesday, January 14, 2009 11:21:03 AM > Subject: [low dose naltrexone] Re: Wegener's Granulomatosis > > > > > > > Hi, I have WG too. I started LDN in August of 2008. I had one > relapse or infection while being on LDN. I am going to start LDN back > this weekend. I am going to give it another try. My doctors dont know > that I am taking this medication. It think that it would very > beneficial for him to try. How long has he had WG and what areas > besides the kidneys are involved? WG has affected my sinuses, lungs, > tear ducts and hearing. My kidneys have been damaged, but I still > normal kidney function. Of course, that would make limited WG. If you > need anymore information just let me know. > > > > Best Wishes, > > a > > > > > > Hi a. thanks for this post. My Dad's WG has mostly affected his > kidneys. While he has had some permanent kidney damage, they are > stable and don't require, and have never required dialysis. The WG > first manifested itself in is sinuses, a hoarse voice,elevated SED > rate and fatigue. But his sinuses don't seem to be a problem anymore. > He was on chemo for a year and had his last chemo in july 08. since > then he has been on .05 mg of prednisone every other day. At the > urging of his rheumatoligist he started Methotrexate in December. > this is proving to be a challenge. They tried him on CElll cept, but > he said he would rather go back to IV chemo as the cell cept made him > feel so bad. His Nephrologist is the DR who is the one who is > prescribing the drugs. > given the ton of other drugs he is taking I hesitate to try something > that the docs are not aware of. > > Please let me know how the LDN works for you when you start back up. > > Thanks a lot. > > > > ____________ _________ _________ __ > > From: nschertler <nschertler@ ...> > > low dose naltrexone > > Sent: Tuesday, January 13, 2009 3:11:44 PM > > Subject: [low dose naltrexone] Wegener's Granulomatosis > > > > > > Hi I am new to this group. In fact I am new to any group like this so > > if I am doing something wrong, I apologize in advance. > > > > My 85 year old father has Wegener's Granulomatosis. He went through a > > year of chemo and prednizone, and the disease is now in remission. > > > > About 3 weeks ago his nephrologist prescribed methotrexate to help > > keep the disease in remission as there is a high relapse rate with > > this disease. The problem is that the methotrexate is knocking him on > > his butt. Prior to his getting this disease he was in remarkable > > health. Now he has a doctor for just about every organ. Does anyone in > > this group have any experience w/ LDN and Wegener's? The one article > > on the home page is interesting, but I suspect it will take more than > > one testimonial to convince his doctors to give this a try. > > > Quote Link to comment Share on other sites More sharing options...
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