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Old 06-13-2006, 07:58 AM   #1
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Join Date: Jun 2006
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jek1955 HB User
My wife has just been diagnosed with Lupus, where do I start?

A little history:

Jackie, my wife is 50. Her younger sister, 43, was diagnosed a few years ago with Lupus. My Mother-in-Law passed away this past November, at 77, of auto-immune blood related disease. She battled this for almost 10 years with periods of remission after treatments.

Jackie has been seeing rheumatologyst for some time becasue of family history. She at time has Reynaud flare ups, mostly in colder weather. In addition over the past years she has always spoke of achiness throughout her body.

Jackie recently had a small rash on her face removed and tested. The rash was small and a concern was that it might be skin cancer becasue of it's small size, shape and color. This rash did however at times get larger and smaller but never disappear. From the various tests she has now been dianosed with Lupus.

What should I expect and what can I do?

 
Old 06-13-2006, 09:07 AM   #2
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: My wife has just been diagnosed with Lupus, where do I start?

Hi, jek, and welcome! Here are some things that could be of help to your wife & you, now that she knows for sure she has lupus.

(1) The "sticky posts" at the front of the Board have brief lists, to get your feet wet. Further, the one about "test results" includes a link where you can find a whole raft of much more detailed info.

(2) The "Resources" tab above can also take you to a lot of detailed info.

(3) There are several excellent & comprehensive lupus hardcovers available in most libraries & bookstores. Two authors in particular come to mind: Dr. Daniel Wallace, and Dr. Robert Lahita. (Both are well-known U.S. rheumies.)

(4) Know that there are "degrees" of lupus. Obviously, SLE = systemic lupus, but there are also lesser "subsets": DLE = discoid; SCLE = subacute cutaneous; etc. Rashes can occur in all the groups, so the rash alone doesn't define the extent of lupus in any patient; instead the *overall* symptoms, test results, etc. defines the type of lupus one has.

But even within full-blown SLE, many cases remain mild, sparing the internal organs. Also---people with severe SLE problems today have so much better help, meds, etc. than they used to, in the past.

So while the word "lupus" is frightening, know that many, many people with it can lead fairly normal lives. I really hope you do read enough to confirm this reassuring concept, but as better explained by the true experts.

(5) Your wife's dr. may speak to lifestyle changes that could help, e.g., sun avoidance may be necessary. And taking naps. (I'm adept at both. Etc.

(6) Tell your wife about this site, too, so you both can post.

With my best wishes to your wife & to you, from Vee

(P.S. I'm sure others will chip in soon, too. We've got different types of lupus represented here, different symptoms & different meds, etc.---we're a very varied group & are always eager to meet new members.

 
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Old 06-13-2006, 09:36 AM   #3
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Join Date: May 2004
Posts: 267
darkwater HB User
Re: My wife has just been diagnosed with Lupus, where do I start?

Hi, there. Just become informed so that you can recognize when things are happening to her that you observe through her symptoms and behavior and be able to understand the things the doctors are telling you. That way, you can help keep her on track to control this disease. If she is past menopause, that may be in her favor, as things seem to slow down with lupus for a number of women once menopause occurs. (One of the going theories is that female hormones, namely estrogen, affect lupus in a negative way.) One of the things that gets to be so trying is to tell family and friends that I can't participate in some activity because I am trying not to aggravate this lupus. Then feeling that they just think I am being dramatic or making excuses because I look like like I am doing just fine. There are so many question marks with lupus, no one, even the doctors, is entirely sure what factors bring on lupus or cause it to flare up, and it is all different for each person.

It gets to be confusing trying to make choices about things like medications, sun exposure, physical activities. Most of us tend to err on the side of caution and just avoid the sun as much as possible. I know that before I started my medication, I could be in the sun only maybe ten minutes before I began to feel exhausted and weak, as if I had been working or running hard, and the achiness would occur a little later in the day after the exposure. Plus, the red scars would pop out on my skin. As for physical activity, your wife will find her own level of tolerance for that through trial and error. Many people are able to continue most of what they did before, it just depends.

I'm not sure what tests your wife has had already, but she and the doctors need to determine what parts of her body have been or are being affected by lupus: skin, hair, joints, circulatory system, gastrointestinal system, organs, etc. Only then can you have some idea how to act on a daily basis to keep yourself healthy and functioning. It could stay relatively mild forever with only joint and muscle aches, skin symptoms, weird gastro problems, etc. But in at least half of those diagnosed, it could also develop into a more serious form that involves internal organs, most often, the kidneys. Hopefully, she will be able to get by with taking an anti-malarial (plaquenil) and some sort of anti-inflammatory (like ibuprofen, naproxen sodium, or one of the prescription ones) to help out when needed. Those have helped most of us tremendously with our symtoms, though the plaquenil takes awhile to build up to its full effectiveness. But if things get more serious, the steroids and other immune-suppressing drugs will come out.

At the beginning, there is a lot of anxiety around the diagnosis of lupus, but as with anything that must be dealt with, acceptance will come when you realize that chances are you will be able to control this disease and it is likely that you will live as long as the next fellow.

Best wishes to you and your wife.

 
Old 06-13-2006, 01:00 PM   #4
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Join Date: May 2006
Location: sunrise, fl, usa
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JudAnnS67 HB User
Re: My wife has just been diagnosed with Lupus, where do I start?

Hello! One thing that I would like to add is how important it is to have a rheumy that you both feel comfortable with and will answer all of your questions.
I am so thankful that I found this website. So many people have the same things going on with their bodies and it's nice to see that we're not alone and not "crazy".
Good luck to you and your wife. She's very lucky to have a husband that takes the time to research her illness. My husband was and is very supportive and for that I am so thankful. Support and patience is so important when dealing with this illness.

 
Old 06-13-2006, 03:41 PM   #5
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Join Date: Apr 2006
Location: Baltimore
Posts: 112
kidd123 HB User
Re: My wife has just been diagnosed with Lupus, where do I start?

Hi. It is great to have a husband ask what he can do. When I was diagnosed with lupus this past March, my husband was so quiet that I thought he didn't care. Then he saw me trying to keep notes in a notebook, and he got on his laptop and made me a spreadsheet just tailored to my new lifestyle. It even has boxes for hrs in the sun, energy levels, joint pain, itching, meds & foods. He wanted me to be able to easily see what might help me have better days. He is a gem! Just thought I would pass this idea on to you, as it was so helpful to me. God bless you both! PS I am 52 yrs old.

Last edited by kidd123; 06-13-2006 at 03:51 PM.

 
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