Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 I am new to the LDN group, and would like to connect with anyone that has had any success (or not) with LDN and WG. My husband is 44 yrs. old and is being asked to go on another Rituxan treatment for his progressing disease. Before this, we would like to see if the LDN would help his symptoms and maybe stop the progression of further damage. Thank you. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Hi , Its me Amy!! I see mom passed the ldn info to you. I start it hopefully this Fri and can't wait. I am sure someone from here will respond to you. Lots of good info. You can also call skip at skips pharmacy In fl. He has lots of info and was very helpful to me. Wishing you guys the best. Let me know if I can do anything.... Amy Sent from my BlackBerryFrom: " McLaughlin" Date: Tue, 2 Dec 2008 10:37:00 -0800<low dose naltrexone >Subject: [low dose naltrexone] WEGENER'S GRANUMATOSIS I am new to the LDN group, and would like to connect with anyone that has had any success (or not) with LDN and WG. My husband is 44 yrs. old and is being asked to go on another Rituxan treatment for his progressing disease. Before this, we would like to see if the LDN would help his symptoms and maybe stop the progression of further damage. Thank you. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Wow, you're quick!! How are you? I was very excited to read about this LDN, and to also hear from your Mom that you'll be trying the treatment soon. It sounds very promising for your disease, as well as many others. All the best to you and your many days of good health ahead! I look forward to hearing from others about any possible help with the Wegeners too. Thanks so much for the info. xoxo On Tue, Dec 2, 2008 at 11:15 AM, Amy D <aimster1967@...> wrote: Hi , Its me Amy!! I see mom passed the ldn info to you. I start it hopefully this Fri and can't wait. I am sure someone from here will respond to you. Lots of good info. You can also call skip at skips pharmacy In fl. He has lots of info and was very helpful to me. Wishing you guys the best. Let me know if I can do anything.... Amy Sent from my BlackBerryFrom: " McLaughlin " Date: Tue, 2 Dec 2008 10:37:00 -0800 <low dose naltrexone >Subject: [low dose naltrexone] WEGENER'S GRANUMATOSIS I am new to the LDN group, and would like to connect with anyone that has had any success (or not) with LDN and WG. My husband is 44 yrs. old and is being asked to go on another Rituxan treatment for his progressing disease. Before this, we would like to see if the LDN would help his symptoms and maybe stop the progression of further damage. Thank you. -- -- McLaughlincell: (805) 432-6476 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Hi , I have WG also. I was diagnosed in October of 2000. I have been on every immunosuppressant that you can take for WG. They would work for a while and then they would stop. At that point, they would start me on another immunosuppressant and it would be the same all over again. This is not including the numerous hospital stays. I started LDN Aug 9, 2008. At the time that I started, I had a serious sinus infection. I could not really tell if it was working or not until I went to the lab. Since September of this year my sed rate has been between 13-17. My C-reactive protein has been less than 0.6, except for one month, which was October it was 1.6. I think that he will do fine with LDN. I am currently on 4.5 mg of LDN. WG has affected my sinuses, hearing, and my lungs. I have to wear hearing aides b/c of it, but that is okay too. I think that LDN would be great for him. Take Care, a From: McLaughlin <wenikimc@...>Subject: [low dose naltrexone] WEGENER'S GRANUMATOSISlow dose naltrexone Date: Tuesday, December 2, 2008, 12:37 PM I am new to the LDN group, and would like to connect with anyone that has had any success (or not) with LDN and WG. My husband is 44 yrs. old and is being asked to go on another Rituxan treatment for his progressing disease. Before this, we would like to see if the LDN would help his symptoms and maybe stop the progression of further damage. Thank you.-- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 , I forgot to tell you that my doctors wanted me to participate in a trial at University of Alabama at Birmingham for Rituxan. In 2006, I was going to do it, but I became scarred after reading all of the side effects that were associated with the infusion. For instance, if something happened to you they would not pay for it. They were just going to get me to the nearest emergency room if that were to happen. I did not agree with that. I also did not like how I was going to be compensated. They were going to pay me $25 for gas and free parking. I live 3 hours from Birmingham, AL. After that I declined to participate. Earlier this year, I decided to participate because I was not getting any better. I called to UAB and they asked me how long I had been on cytoxan. Then they told me that I had ben on too much cytoxan to participate in the study. At that moment, I got so scarred. I did not know what to do. At that time, I was on Imuran 200 mg a day and 40 mg of prednisone. LDN has really made a big difference. Now if I could just work on the sinus pressure. It makes me feel like want to chop my head off. It really hurts so bad. I now know that it is not WG it is the weather. If you would like to talk more you can email me privately. a From: McLaughlin <wenikimc@...>Subject: [low dose naltrexone] WEGENER'S GRANUMATOSISlow dose naltrexone Date: Tuesday, December 2, 2008, 12:37 PM I am new to the LDN group, and would like to connect with anyone that has had any success (or not) with LDN and WG. My husband is 44 yrs. old and is being asked to go on another Rituxan treatment for his progressing disease. Before this, we would like to see if the LDN would help his symptoms and maybe stop the progression of further damage. Thank you.-- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 a,It's great to hear from someone that has been affected with WG and has had some positive results with LDN. You seem to have been effected in the same areas as my husband.....lungs, sinuses, and hearing loss. Before my husband finally received his diagnosis of WG, he had gone through 3 sinus surgeries because of ongoing infections with Psdomonis present. When all failed, he was finally diagnosed by a dermatologist when he had a large skin lesions. We were so excited to finally have a diagnosis; however, very frightened with the answer and how long it took for us to find it. I think having the option to try LDN before enlisting in a third round of Rituxan, it's well worth looking into. Because of the opiate use for so many years due to chronic pain, we'll first have to battle the withdrawal from Vicadin, Xanax, etc. He is also currently on 60 mg. of prednisone which helps, but really messes with his mind and personality. I would love it if my husband, could connect with you directly. I'll have him write you today. Thanks so much, and best of luck to many healthy and happy days ahead. On Tue, Dec 2, 2008 at 1:27 PM, a Nettles <paulnet78@...> wrote: Hi , I have WG also. I was diagnosed in October of 2000. I have been on every immunosuppressant that you can take for WG. They would work for a while and then they would stop. At that point, they would start me on another immunosuppressant and it would be the same all over again. This is not including the numerous hospital stays. I started LDN Aug 9, 2008. At the time that I started, I had a serious sinus infection. I could not really tell if it was working or not until I went to the lab. Since September of this year my sed rate has been between 13-17. My C-reactive protein has been less than 0.6, except for one month, which was October it was 1.6. I think that he will do fine with LDN. I am currently on 4.5 mg of LDN. WG has affected my sinuses, hearing, and my lungs. I have to wear hearing aides b/c of it, but that is okay too. I think that LDN would be great for him. Take Care, a From: McLaughlin <wenikimc@...>Subject: [low dose naltrexone] WEGENER'S GRANUMATOSIS low dose naltrexone Date: Tuesday, December 2, 2008, 12:37 PM I am new to the LDN group, and would like to connect with anyone that has had any success (or not) with LDN and WG. My husband is 44 yrs. old and is being asked to go on another Rituxan treatment for his progressing disease. Before this, we would like to see if the LDN would help his symptoms and maybe stop the progression of further damage. Thank you. -- -- McLaughlincell: (805) 432-6476 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Hi , I can't believe there is someone in the group that has what I have. For the longest I could not talk with anyone with WG because there was no one here with it. Don't get wrong I have met a lot of great people within the group, but it is also better to talk with someone who has the same thing that you have. If your husband or yourself don't mind talking to me over the phone, I will be glad if you would email privately and i would give you my home number. Take care,a From: McLaughlin <wenikimcgmail (DOT) com>Subject: [low dose naltrexone] WEGENER'S GRANUMATOSIS low dose naltrexoneDate: Tuesday, December 2, 2008, 12:37 PM I am new to the LDN group, and would like to connect with anyone that has had any success (or not) with LDN and WG. My husband is 44 yrs. old and is being asked to go on another Rituxan treatment for his progressing disease. Before this, we would like to see if the LDN would help his symptoms and maybe stop the progression of further damage. Thank you. -- -- McLaughlincell: (805) 432-6476 Quote Link to comment Share on other sites More sharing options...
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