New Lupus Drug

[cra]

I too have Lupus. First diagnosed in 2005 (by ANA Test) and I suffered until about 2007 at which point most all symptoms dissapeared. I used Methotrexate starting at 16mg then tapering down to 2mg and then off it by 2007. The only drug I take now is Plaquenil (hydroxychloroquine) which is used to treat or prevent malaria and to treat the symptoms of rheumatoid arthritis and may also fend of diabetes. I must mention that I don't have the discoid lupus but have been affected by skin ulcers. My Lupus symptons seem to be isolated to joint pains. Again those have dissapeared since 2007. I play golf and work out. I can only hope that this 4 year streak continues. I sympathize with all here that have this sucky disease. Onething I can say is that the Doctors I have used here in the Philippines have been awesome!!! and far better and compassionate than any I saw in the states.

Thank you for the inspiration and thoughts of hope, knowing someone was apparently cured helps but I am pretty sure Rusty already tried that. Maybe Rusty will reply and let us know if I am correct. My doctors have warned me that using Methotrexate can cause me more problems than I already have, so I am not too quick to try it and seem to have my issues sort of under control. My main problem was that I was allergic to all pill form NSAID's, but I have now found a liquid form called Mobic suspension that my body seems to tolerate and it helps me a lot with the joint pains.Life is good and a positive attitude also helps IMO. I guess auto immune diseases are more common than most people realize.

I have had discussions with Rusty in the past regarding Lupus and frankly what I got from him IS.......he is extremely stubborn, arrogant and seems very lazy about his illness taking it for granted by his behavior. He is ABSOLUTELY is own worst enemy about taking care of himself and this illness. Just my opinion based on objective observations of his lifestyle. Not looking for a fight on this post but being someone with Lupus I feel justified in saying it how I see it.

[Mr Lee]

I too have Lupus. First diagnosed in 2005 (by ANA Test) and I suffered until about 2007 at which point most all symptoms dissapeared. I used Methotrexate starting at 16mg then tapering down to 2mg and then off it by 2007. The only drug I take now is Plaquenil (hydroxychloroquine) which is used to treat or prevent malaria and to treat the symptoms of rheumatoid arthritis and may also fend of diabetes. I must mention that I don't have the discoid lupus but have been affected by skin ulcers. My Lupus symptons seem to be isolated to joint pains. Again those have dissapeared since 2007. I play golf and work out. I can only hope that this 4 year streak continues. I sympathize with all here that have this sucky disease. Onething I can say is that the Doctors I have used here in the Philippines have been awesome!!! and far better and compassionate than any I saw in the states.

Thank you for the inspiration and thoughts of hope, knowing someone was apparently cured helps but I am pretty sure Rusty already tried that. Maybe Rusty will reply and let us know if I am correct. My doctors have warned me that using Methotrexate can cause me more problems than I already have, so I am not too quick to try it and seem to have my issues sort of under control. My main problem was that I was allergic to all pill form NSAID's, but I have now found a liquid form called Mobic suspension that my body seems to tolerate and it helps me a lot with the joint pains. Life is good and a positive attitude also helps IMO. I guess auto immune diseases are more common than most people realize.

I have had discussions with Rusty in the past regarding Lupus and frankly what I got from him IS.......he is extremely stubborn, arrogant and seems very lazy about his illness taking it for granted by his behavior. He is ABSOLUTELY is own worst enemy about taking care of himself and this illness. Just my opinion based on objective observations of his lifestyle. Not looking for a fight on this post but being someone with Lupus I feel justified in saying it how I see it.

I can't, and wont argue with you there because we are all masters of our own destiny, and some of us get lucky (yes I feel it is luck) and find things that help us and others keep seeking them out, as I have done for most of my life, until I went through many doctors until I found a couple who seemed to really wish to work with me. My biggest problem is that I look 100% healthy when I am not having any type of attack, and I hide in the house when I am, so most doctors look upon many of us as if we are Hypochondriacs, and I have found most others just do not know much about the immune system, so for them it is all trial and error, and many people give up when they find out that they have an auto immune disease. The key to life IMO is to never give in to anything or anyone.

[No name]

I too have Lupus. First diagnosed in 2005 (by ANA Test) and I suffered until about 2007 at which point most all symptoms dissapeared. I used Methotrexate starting at 16mg then tapering down to 2mg and then off it by 2007. The only drug I take now is Plaquenil (hydroxychloroquine) which is used to treat or prevent malaria and to treat the symptoms of rheumatoid arthritis and may also fend of diabetes. I must mention that I don't have the discoid lupus but have been affected by skin ulcers. My Lupus symptons seem to be isolated to joint pains. Again those have dissapeared since 2007. I play golf and work out. I can only hope that this 4 year streak continues. I sympathize with all here that have this sucky disease. Onething I can say is that the Doctors I have used here in the Philippines have been awesome!!! and far better and compassionate than any I saw in the states.

Thank you for the inspiration and thoughts of hope, knowing someone was apparently cured helps but I am pretty sure Rusty already tried that. Maybe Rusty will reply and let us know if I am correct. My doctors have warned me that using Methotrexate can cause me more problems than I already have, so I am not too quick to try it and seem to have my issues sort of under control. My main problem was that I was allergic to all pill form NSAID's, but I have now found a liquid form called Mobic suspension that my body seems to tolerate and it helps me a lot with the joint pains. Life is good and a positive attitude also helps IMO. I guess auto immune diseases are more common than most people realize.

I have had discussions with Rusty in the past regarding Lupus and frankly what I got from him IS.......he is extremely stubborn, arrogant and seems very lazy about his illness taking it for granted by his behavior. He is ABSOLUTELY is own worst enemy about taking care of himself and this illness. Just my opinion based on objective observations of his lifestyle. Not looking for a fight on this post but being someone with Lupus I feel justified in saying it how I see it.

Wow, and I'm arrogant. Funny, I don't have a clue as to who you are and I don't really want to know. Edited February 13, 2011 by Flirltilzier

[No name]

I have had discussions with Rusty in the past regarding Lupus and frankly what I got from him IS.......he is extremely stubborn, arrogant and seems very lazy about his illness taking it for granted by his behavior. He is ABSOLUTELY is own worst enemy about taking care of himself and this illness. Just my opinion based on objective observations of his lifestyle. Not looking for a fight on this post but being someone with Lupus I feel justified in saying it how I see it.

You forgot fat! I'm also fat because I'm lazy.Now why did you feel the need to attack me? What have I done to you?I remember talking to one guy that took MTX without a doctors supervision here in the Philippines. That would be a very bad lifestyle choice.Do you know that you can test positive for ANA and have lupus? Do you know you can test negative for it and have lupus.Did you ever take 90mg of Prednisone a day. I took Prednisone for about 10 years. That may have saved my life but it also did tremendous damage.I've done one very stupid thing over the last year. I agree, it was stupid. I started freaking smoking which leaves me shaking my head in disbelief!Lazy? Do you know that two years ago I was walking an AVERAGE of two miles a day every day of the week? I didn't walk every day because they say that's not good for you but some days I walked more than that. Yep, I'm lazy.Do you know that I hate not being able to do that now?Why do I not do it. Because every time I try, I get rashes. Rashes are very common in system lupus erythematosus. There is no need to say you don't have discoid because you had skin problems. SLE includes skin problems.I've had lupus all my life. It was diagnosed in the 90's after I woke up with both sides of my face paralyzed. The doctors thought I might die from a stroke or other vascular problems.I'd really like to know what I said to you that was arrogant. You're hiding being three letters. No need to hide, I wont do anything to you physically or any other way, I'm not that kind of person. I'm not stupid enough to cause any problems.I'm having a really hard time not to resort to your level, there is an obvious word to use for someone that says they are not looking for a fight right after they say I'm lazy and arrogant. There was absolutely no reason to do that. Zero. Someone mentioned my name and you felt so insecure that you needed to rip into me. Okay dude, do you feel better about yourself now?Yeah the smoking thing, that's just crazy. I'm so angry with myself over it. I will quit though.BTW, I did take plaquenil for several years. Don't know if it helped or not. The doctor were throwing everything at me in hopes that something would work. I had to get off it after it caused a decrease in my field of vision.Don't be surprised if I don't respond further to you. I would like to know who you are so I can be sure to avoid you.I consider my lupus in mostly in remission now because all I have is joint pain, fever and fatigue and rashes. It isn't trying to kill me. During the 90's doctor told me that my life expectancy was too up in the air to predict. But it also left me with a damaged heart, lungs, circulatory system and it the treatment caused my diabetes. You don't seem to have a very good understanding of lupus. I don't understand how anyone that has had lupus can call someone else lazy. I'm not lazy dude, I'm sick! I find it hard to believe that you've walked in my shoes.Have a nice life. I wish you much hope, faith and love.....

[No name]

PS. Walking causes me a lot of pain even when I'm feeling good. My hips are in extreme pain and my leg muscles cramp badly and walking doesn't just give me rashes, it lays me up in the bed for days. You can see the muscles in my legs contracting. My leg muscles have hurt since I was 16 freaking years old. I use to wake up screaming at night. Don't do that any more, they just hurt all the time.Oh well, I'm off to go do something productive.

[Mr Lee]

OK guys no need to argue and definitely no need to call each other names, and it is more than enough that our bodies are attacking us, without us attacking each other. I am glad cra's lupus seems to be in total remission, that is if it even was lupus, because I have found that doctors make way too many mistakes, but if it was lupus, then I suspect it might come back one day, but I hope not for their sake. As I wrote in a past post, we are all the masters of our own bodes and only we know what out bodies can take, and surely one size does not fit all, since there are different types of lupus and besides that, not everyone gets it as bad as some others, and not everyone gets all the symptoms that Rusty seems to have or has had during his life. I have to agree with Rusty on the walking issue but I try to do it anyway and that is why we live in the city, so I can go walking inside the aircon malls because if I walk too much outside, then all hell most often breaks out with my body, and I believe it is from the sun and from sweating, so I try to avoid both as much as possible. Lack of exercise is a self fulfilling problem, the less exercise one does, the less they can do, and so on and so on, until we end up bed ridden, but we all have to know our own bodies and how much we can take, since from the many people I have met with lupus, some get it very bad and others have mainly the joint pains. I saw one woman with open wounds which would not heal and a friend of mine who is an Australian trained doctor told her to use Epson salts on her open wounds and they healed right away, and she had been seeing all types of specialists in the US and was ready to commit suicide before he told her about the Epson salts, so what is my point, it takes the right doctor hitting on the right treatment for the symptoms that person has, and then IMHO it takes luck that the meds he gives you work for you.

[cra]

I have had discussions with Rusty in the past regarding Lupus and frankly what I got from him IS.......he is extremely stubborn, arrogant and seems very lazy about his illness taking it for granted by his behavior. He is ABSOLUTELY is own worst enemy about taking care of himself and this illness. Just my opinion based on objective observations of his lifestyle. Not looking for a fight on this post but being someone with Lupus I feel justified in saying it how I see it.

You forgot fat! I'm also fat because I'm lazy.Now why did you feel the need to attack me? What have I done to you?I remember talking to one guy that took MTX without a doctors supervision here in the Philippines. That would be a very bad lifestyle choice.Do you know that you can test positive for ANA and have lupus? Do you know you can test negative for it and have lupus.Did you ever take 90mg of Prednisone a day. I took Prednisone for about 10 years. That may have saved my life but it also did tremendous damage.I've done one very stupid thing over the last year. I agree, it was stupid. I started freaking smoking which leaves me shaking my head in disbelief!Lazy? Do you know that two years ago I was walking an AVERAGE of two miles a day every day of the week? I didn't walk every day because they say that's not good for you but some days I walked more than that. Yep, I'm lazy.Do you know that I hate not being able to do that now?Why do I not do it. Because every time I try, I get rashes. Rashes are very common in system lupus erythematosus. There is no need to say you don't have discoid because you had skin problems. SLE includes skin problems.I've had lupus all my life. It was diagnosed in the 90's after I woke up with both sides of my face paralyzed. The doctors thought I might die from a stroke or other vascular problems.I'd really like to know what I said to you that was arrogant. You're hiding being three letters. No need to hide, I wont do anything to you physically or any other way, I'm not that kind of person. I'm not stupid enough to cause any problems.I'm having a really hard time not to resort to your level, there is an obvious word to use for someone that says they are not looking for a fight right after they say I'm lazy and arrogant. There was absolutely no reason to do that. Zero. Someone mentioned my name and you felt so insecure that you needed to rip into me. Okay dude, do you feel better about yourself now?Yeah the smoking thing, that's just crazy. I'm so angry with myself over it. I will quit though.BTW, I did take plaquenil for several years. Don't know if it helped or not. The doctor were throwing everything at me in hopes that something would work. I had to get off it after it caused a decrease in my field of vision.Don't be surprised if I don't respond further to you. I would like to know who you are so I can be sure to avoid you.I consider my lupus in mostly in remission now because all I have is joint pain, fever and fatigue and rashes. It isn't trying to kill me. During the 90's doctor told me that my life expectancy was too up in the air to predict. But it also left me with a damaged heart, lungs, circulatory system and it the treatment caused my diabetes. You don't seem to have a very good understanding of lupus. I don't understand how anyone that has had lupus can call someone else lazy. I'm not lazy dude, I'm sick! I find it hard to believe that you've walked in my shoes.Have a nice life. I wish you much hope, faith and love.....

Sorry to give you a hard time Rusty. Actually no I'm not! The last time we interacted I gave you a bit of grief as well in the form of constructive critisism based on your lifestyle at the time which also included drinking beer or was it hard alcohol as well as cigarettes. I can't remember the forum (I just did just try to find them but no luck) but we had a number of constructive and positive exchanges as well. Mostly me giving you advice based on my own success at the time. You are a very bright, articulate man no doubt which is why I gave you such a hard time about how you were treating your body and why you suffered so much. If you were stupid I wouldn't care less. Oh, and my name is corey. Don't be surprised if I don't respond further to you. I would like to know who you are so I can be sure to avoid you. NO, OF COURSE YOUR NOT ARROGANTTake care Rusty and Best of Success with your Lupus and Life

[Art2ro]

Yeah, everyone has ailments when getting older or had it forever. One can only share their personal experiences and not critisize others of their lifestyle, because it's the way they choose to live their lives! Maybe it's just their way in coping with things to relieve the pain and stress of everyday life! No one likes to be criticized or scolded by others like what our parents always told us what to do when we were all young way back when and didn't know any better, but now we are all adults and have our individual ways of living our life as we see fit! All we can do is be kind to others, read, listen and learn from other people's experiences, but not criticize others in what or how they live their lives unless they ask for your help or opinions!

[cra]

Yeah, everyone has ailments when getting older or had it forever. One can only share their personal experiences and not critisize others of their lifestyle, because it's the way they choose to live their lives! Maybe it's just their way in coping with things to relieve the pain and stress of everyday life! No one likes to be criticized or scolded by others like what our parents always told us what to do when we were all young way back when and didn't know any better, but now we are all adults and have our individual ways of living our life as we see fit! All we can do is be kind to others, read, listen and learn from other people's experiences, but not criticize others in what or how they live their lives unless they ask for your help or opinions!

I have to disagree. I get tired about all the political correctness like the age of a person should be a hinderance to wake up calls about their lifestyle. When you have an open forum especially in a serious health related topic, that is an invitation to voice your opinions as long as they are not meant to be malicious in their intentions. Rude awakenings are good at times and send a message to people that oftentimes need it. However, we live in a country and culture where any critisism can often land you in court for slander or libel. Not a very thick skinned place. I will however, always take the opportunity to point out flaws in a persons character where their life or quality of life is at stake and I would expect the same of others to do the same to me.

[Dave Hounddriver]

I will however, always take the opportunity to point out flaws in a persons character where their life or quality of life is at stake and I would expect the same of others to do the same to me.

Then allow me to point out that such is a flaw in your character. I learned in kindergarten that the attitude you describe is a great way to lose friends, which will impinge on your quality of life.I almost did not post this, as I strongly disagree with your analysis that you are to be the one to point out another person's flaws. I decided to post it because the normal absence of these kinds of posts are the reason I frequent THIS forum as opposed to others. I notice that the posters in this forum often have a way of 'educating' fellow posters in a nice way. Most do not go around pointing out flaws in another posters character.