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tfrag9
11-12-2002, 11:33 AM
I am a 29 year old male who was diagnosed with Lupus 3 years ago. My symptoms have progressively gotten worse since the diagnosis. It started out with joint pains and decreased appetite. Since then I have been hospitalized four times with pneumonia like symptoms. Along with the lung involvement, my kidneys are now under attack. I have been on various dosages of prednisone for almost 3 years. Each time I get close to wiening myself off the drug, I have a flare up. I have also been on various arthritis meds which were little help. I am currently on 10mg of prednisone along with 200mg of Plaquanil 2x daily. It has been determined that my next step is chemotherapy which I begin this week. It would be great to hear about actual accounts of someone who has gone through this therapy. Also, I appreciate any responses, but if there are any men out there I would like to hear from you. Being that this is a 'disease for women', there is not much written about men and lupus.

Saysusie
11-15-2002, 03:53 AM
tfrag9; Our moderator, St. James, is also a male who has been diagnosed with Lupus. In fact, more and more men are being diagnosed with this disease. I am sure that he will be more than happy to talk to you from a man's perspective.
Regarding your treatment - you seem to be on the most common treatments for this disease. I would caution you about trying too soon to get off of prednisone. My daughter tried that and it resulted in serious damage to her heart which eventually contributed to her death. I know that each medication has its own set of side effects which, sometimes, feel worse than the disease. It is, indeed, a catch 22!
It sounds like your doctors are familiar with the disease and are doing the right things. Try to hang in there.
If you do not hear from St. James, write back and I will try to find a male to respond to you.
Best Of Luck
Saysusie

stjames13
11-15-2002, 04:30 AM
Sorry tfrag9 I've been down and out for a bit...what can I do for ya??? I have been on BOTH prednisone and plaquenill but never heard of the next step being CHEMO....please explain why the docs told you that was there next move when ther are so many other treatments available??????

stjames

[This message has been edited by stjames13 (edited 11-15-2002).]

rushman8
06-20-2003, 10:47 AM
:) hi thrag9,
I also have been diagnose 3 1.5 yrs ago and they finally got mine in remission, we think, the doctor told me that we might have to use chemo too if it didnt get under controlled, which i am still on prednisone, at 15 mg. stress is my worst enemy, it will set me into a flare up if im not carful. unfortionately their are no other proven method of treating this desease.

Brian_Mosher
06-20-2003, 01:30 PM
I keep trying to reply to you, but the site is doing something funky. I'm a male too. I've been on chemo. Email me with your questions if you want. Would love to hear from you.

brian_mosher2002@yahoo.com