Doughnut Posted August 2, 2005 Share Posted August 2, 2005 I'm going to confess right off that I've had a bad few weeks and the worst part about it is that Claire's been feeling ill. It transpires that she's felt unwell for over a month now but didn't mention it to me until very recently. She only told me then because she thought the cancer had returned. Anyway, to cut a long story short they think she's still NED but she may have lupus. What the he*l is lupus? I mean I've heard of it but I don't know what it is. Claire said something about her immune system but if she's got something else going on... I'm in a bit of a panic to be honest. Can anyone tell me whether, if she does have lupus, this is something that she could have been made vulnerable for by the cancer or its treament? Is it curable and will it have any effect of her fighting the cancer? I'm sure she'll know the answers to this if lupus is confirmed but I want to know now. Can anyone help? Thanks. Dee Quote Link to comment Share on other sites More sharing options...
Addie Posted August 2, 2005 Share Posted August 2, 2005 I'm no doctor...but Lupus is an autoimmune disease. There are two main kinds of lupus...one affects the skin, the other affects internal tissues/organs/systems. The skin variety is called discoid lupus, I think. My sister had SLE....systemic lupus erythematosis, the internal kind. It used to be that there wasn't a very effective treatment for lupus and those affected with SLE often didn't survive beyond 10 yrs. from diagnosis. This is no longer the case. If I remember right, part of my sister's tx for lupus was prednisone. Here is a link with a lot of information. Some of the symptoms of lupus can be problematic...but everyone is affected differently...so don't panic about this dx...just educate yourself....and know that there are much more effective treatments today for lupus than there were when my sis was first diagnosed. Good luck...here is the link: http://www.lupus.org/education/faq.html#1 Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted August 2, 2005 Share Posted August 2, 2005 Hi Nuts. First off. Lupus is one of the most difficult of diseases to put a diagnosis to. There is not one test, but a series of observations and a bundle of tests that a rheumatologist will use to declare "lupus". She should be evaluated by a rheumy. Nothing less. Lupus is one of the most complicated diseases that I can think of. It affects everyone so differently. One of the main symptoms is fatigue. I call it "lupus tired". Can't get out of bed. One of our members here has lupus. Her mom had lc. She is a real sweet gal. I will put the two of you in touch via pm. Lupus can be a bugger, that is for sure. There are many different drugs that treat the lupus depending on where it may be attacking. Plaqenil is another that is often used to keep it at bay. It is an innocent drug and one that I have been on for about 8 years to rhreumatoid arthritis. G.L. to Claire with this. I will get you the pm of the woman who you will want to contact. Cindi o'h Quote Link to comment Share on other sites More sharing options...
pritchie Posted August 2, 2005 Share Posted August 2, 2005 Dee, I have SLE and can answer just about any question you have. There is actually another form of Lupus that is drug induced and once the medication is discontinued the symptoms will go away. If you have any other questions just pm or e-mail me. Pamela Quote Link to comment Share on other sites More sharing options...
Doughnut Posted August 3, 2005 Author Share Posted August 3, 2005 Just a public thank you to you all and to those I've thanked privately too. I have to say that I am relieved to see you here saying that lupus is difficult to diagnose because I got a bit het up when Claire said they weren't sure and it was going to take a fair old while to confirm or not. Sounds like that is par for the course rather than incompetence. I knew very little about lupus but thought it was a fatal disease - very relieved to know I'm wrong. Dee Quote Link to comment Share on other sites More sharing options...
Eileen Posted August 3, 2005 Share Posted August 3, 2005 Hi---strange that this should come up. I was having these strange sores come up on my legs, so I went to a dermatologist becuse I was worried about skin cancer. They did a biopsy and they think I may have lupus, but it is not drug induced since I was not on any medications. They took blood and I will have the results soon. From what I read though, there is not a test that confirms it so I do not know what the blood will show. I really do not have any symptoms, however, when I did have my lobectomy, the surgeon removed alot of inflammatory tissue which may have been sarcoidosis, another autoimmune disease. regards Quote Link to comment Share on other sites More sharing options...
Doughnut Posted August 3, 2005 Author Share Posted August 3, 2005 Sorry to hear that Eileen. Let's hope it's not eh? Dee Quote Link to comment Share on other sites More sharing options...
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