New Lupus Drug

[Mr Lee]

Because Rusty mentioned Lupus and a friend just sent this to me, I thought I would share it, Benlysta is a new experimental drug that is supposed to help. You can read about it HERE. Maybe it is available in the Philippines or in India or somewhere, so if anyone knows if it is, then please let us know. added: I have been lucky and can feel the attacks coming on, so I use one low doses of Methylprednisolone 4mg as soon as I feel it coming on and that seems to have been preventing a full blown episode for the last year or so but I do suffer the joint pains most of the time when not on that for a whole week treatment. Of course the side effects of the meds can be as bad as the problem itself at times.

[Jake]

Because Rusty mentioned Lupus and a friend just sent this to me, I thought I would share it, Benlysta is a new experimental drug that is supposed to help. You can read about it HERE. Maybe it is available in the Philippines or in India or somewhere, so if anyone knows if it is, then please let us know. added: I have been lucky and can feel the attacks coming on, so I use one low doses of Methylprednisolone 4mg as soon as I feel it coming on and that seems to have been preventing a full blown episode for the last year or so but I do suffer the joint pains most of the time when not on that for a whole week treatment. Of course the side effects of the meds can be as bad as the problem itself at times.

I am really sorry to hear both you and Rusty have symptoms of Lupus. We hope and pray that one day, a new and improved medication will be found to completely eliminate the disease without any serious side effects. Several years ago, I was diagnosed as a type II diabetes and so far so good with the proper meds, a change in eating habits and daily exercise. Most importantly, It is really a great blessing that we have wifes and girlfriends to take care of us.Respectfully -- Jake

[No name]

Because Rusty mentioned Lupus and a friend just sent this to me, I thought I would share it, Benlysta is a new experimental drug that is supposed to help. You can read about it HERE. Maybe it is available in the Philippines or in India or somewhere, so if anyone knows if it is, then please let us know. added: I have been lucky and can feel the attacks coming on, so I use one low doses of Methylprednisolone 4mg as soon as I feel it coming on and that seems to have been preventing a full blown episode for the last year or so but I do suffer the joint pains most of the time when not on that for a whole week treatment. Of course the side effects of the meds can be as bad as the problem itself at times.

I probably would have developed diabetes anyway but Prednisone made sure I developed it. Long term use of it will kill you but it will also keep you alive.I took as much as 90mg a day took 60 for a long time 30 for even longer. It is a good but dangerous drug long term.I woke up with both side of my face paralyzed and that's when they decided I wasn't faking.

[Mr Lee]

Because Rusty mentioned Lupus and a friend just sent this to me, I thought I would share it, Benlysta is a new experimental drug that is supposed to help. You can read about it HERE. Maybe it is available in the Philippines or in India or somewhere, so if anyone knows if it is, then please let us know. added: I have been lucky and can feel the attacks coming on, so I use one low doses of Methylprednisolone 4mg as soon as I feel it coming on and that seems to have been preventing a full blown episode for the last year or so but I do suffer the joint pains most of the time when not on that for a whole week treatment. Of course the side effects of the meds can be as bad as the problem itself at times.

I am really sorry to hear both you and Rusty have symptoms of Lupus.  We hope and pray that one day, a new and improved medication will be found to completely eliminate the disease without any serious side effects.  Several years ago, I was diagnosed as a type II diabetes and so far so good with the proper meds, a change in eating habits and daily exercise.  Most importantly, It is really a great blessing that we have wifes and girlfriends to take care of us.Respectfully -- Jake

Jake thank you, but we all have to deal with the cards life deals us and so far I really cannot complain because for now the low doses work for me to stop my immune system from going into overdrive, and as you pointed out, I am lucky to have a great wife to take care of me. :) Rusty I know about the possible things steroids can do to a person and that is why I try to take as little as possible and only use them sparingly, but taking them sure beats dying when an attack hits me. The sad part of any immune system problem is that the doctors really do not know much about them and thus you having to wait until a severe attack for them to believe you. Sad, but not much any of us can do about it.

[No name]

Lee,I am not encouraging you NOT to take it. I encouraged you to ask your doctor about it a year before you did it. :)I probably need a short term low dose of it. Doctor wont give it to me without checkup. Low dose for a week wont hurt you. I know I could go buy it but if the doc says no, he's probably right. :) Prednisone is very bad for diabetes so I wont play doctor myself. Not in this caseThe first time I developed diabetes was when I was on about 60 mg of the stuff. It went away for years but now it is hear to stay. Maybe if I lost a lot of weight. A LOT :) I don't know why I don't get off my lazy but and do something about it.

[Mr Lee]

Lee,I am not encouraging you NOT to take it.  I encouraged you to ask your doctor about it a year before you did it. :)I probably need a short term low dose of it.  Doctor wont give it to me without checkup.  Low dose for a week wont hurt you.  I know I could go buy it but if the doc says no, he's probably right. :thumbsup:  Prednisone is very bad for diabetes so I wont play doctor myself.   Not in this caseThe first time I developed diabetes was when I was on about 60 mg of the stuff.  It went away for years but now it is hear to stay.  Maybe if I lost a lot of weight.  A LOT :buttkick:  I don't know why I don't get off my lazy but and do something about it.

Rusty, losing weight is the key to controlling your diabetes problem, so if you wish to live the life in the PHL that you seem to value, then do it and get off your lazy butt.   :o   See all, Rusty knows me, so he knows I say that with his best interests and not with any intent to insult him.  :23_11_62[1]: As for the Methylprednisolone 4mg, I am pretty sure Jessie can go into some of the local drug stores with it written on a piece of paper and get it without a script because that was what I had my wife do last year when I had a severe attack and they sold her 16 mg tabs in single packs and I just broke them up into 4 because they had the lines in them to make separation easy, and then just took it as a dose pack but with 4 mg doses instead of 16 mg doses and besides gaining weight from it (as always), it did not cause any other problems. I have found weaker doses still work but not as quickly. The other things that really helps me is exercise (walking in the malls etc), keeping my weight down and trying to stay out of too much sun or heat because severe sweating causes outbreaks for me. I guess life is what we make of it and I refuse to give in to anything or anyone, which includes my doctors.    :th_thholysheep:

[No name]

Lee,I am not encouraging you NOT to take it. I encouraged you to ask your doctor about it a year before you did it. :)I probably need a short term low dose of it. Doctor wont give it to me without checkup. Low dose for a week wont hurt you. I know I could go buy it but if the doc says no, he's probably right. :thumbsup: Prednisone is very bad for diabetes so I wont play doctor myself. Not in this caseThe first time I developed diabetes was when I was on about 60 mg of the stuff. It went away for years but now it is hear to stay. Maybe if I lost a lot of weight. A LOT :buttkick: I don't know why I don't get off my lazy but and do something about it.

Rusty, losing weight is the key to controlling your diabetes problem, so if you wish to live the life in the PHL that you seem to value, then do it and get off your lazy butt. :o See all, Rusty knows me, so he knows I say that with his best interests and not with any intent to insult him. :23_11_62[1]: As for the Methylprednisolone 4mg, I am pretty sure Jessie can go into some of the local drug stores with it written on a piece of paper and get it without a script because that was what I had my wife do last year when I had a severe attack and they sold her 16 mg tabs in single packs and I just broke them up into 4 because they had the lines in them to make separation easy, and then just took it as a dose pack but with 4 mg doses instead of 16 mg doses and besides gaining weight from it (as always), it did not cause any other problems. I have found weaker doses still work but not as quickly. The other things that really helps me is exercise (walking in the malls etc), keeping my weight down and trying to stay out of too much sun or heat because severe sweating causes outbreaks for me. I guess life is what we make of it and I refuse to give in to anything or anyone, which includes my doctors. :th_thholysheep:

You don't have to write it down. We've talked about this before.. Most drugs can be had here without a prescription. Controlled substances of course and you'll find others. Sometimes the Pharmacist makes it up as they go too. Once I was told I needed an Rx for Effexor but they never made me produce it. So who knows. They said, next time would have to have it.I know a girl that was having cyst on her ovaries and doctor gave her something to stop the bleeding. The Pharmacy required an Rx for that.I know people that get methotrexate here. It is a VERY dangerous drug used to treat lupus. It has to be monitored. If not monitored by an expert the drug can kill you quickly. Doctors refused to write it for me if I missed even one appointment! Can get it over the counter here. It is a chemotherapy drug, often used to fight breast cancer in the past.. It is pretty old so I doubt it is used that much. It also kills the immune system so it can be helpful for fighting more advanced cases of lupus and also used when Prednisone is not an option. It doesn't work as fast as Prednisone though. Most of the time, there is no problem with taking it. But if things do go wrong, then you will go into liver failure and die.They also have a wonderful pain killer here. Starts with a P, one of those words Jessie always says faster than i can even hear. LOL P@#@#$@( Acid. It s addictive, when I take an entire pill, it knocks me out. That's when I asked Jessie about it being addictive. I am amazed that it is over the counter! Got a migraine, awesome stuff. I only take half of one now. Doesn't work as fast but it always kills my pain.I'm very afraid of addiction so most of the time, I'm quite smart about it.As for being lazy, you know, even my doctors were understanding. When I take a step, it is like someone is tightening a rubber band that attaches my hips. Imagine one of those balsa wood planes we had as kids with a rubber band. Let it go and the propeller spins. That is what it feels like when I walk. When I walk, I feel that and I get rashes and if I walk too much I lay in the bed for four days.This is a common problem for people with lupus, when every step hurts, you tend not to step. Just because I can yell at myself, don't mean you can. Well, you can but i wont listen. LOL :1 (103): "Yes I have an attitude, deal with it." LOLBut you know what? I've talked enough about my poor health. I'm gonna shut up now and go back to ignoring it as much as possible. I shouldn't have even moved here because of it but I'm gonna die here eventually and I'm gonna do it happy. :)Oh one more thing, weight alone is the not the controlling factor for diabetes. I could get to 180 pounds and I would probably still have it.

[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.

[cra]

I need to add to my previous posting that something incredible has happened during this time I have Lupus. I have been able to conceive a child in 2008. This is the first time I havebeen able to do this in my life. Previously I had been tested and was found to have a low sperm count and despite trying in previous relationships was unable to get anyone pregnant. Then I get diagnosed with Lupus and somehow all the drugs I was taking for this illness somehow cleaned up my sperm ( it became clear) and allowed me to produce a baby with my wife. I have a three year old girl that is in perfect health and knock on wood has not even had a cold since birth. go figure!!!

[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.