My girlfriend, instead of having rheumatoid arthritis like her mother, has tested positive for lupus. This was the confirming bloodwork. The previous battery of tests showed negative on RA, and had ANA levels of “borderline positive.” So we’ve been able to do a little research in that week before these results came in yesterday, and know a lot more about the disease than we initially did. She’ll be seeing her “lupus doctor” in about a week and we’re getting literature sent to us from the Lupus Society, so this isn’t a question asking for medical advice. (Because even if it wasn’t against the rules here, it’s a dumb idea to have strangers give diagnosis and treatment.)
So what changes should we expect to have to make in our lives as time goes by? She’s in her mid-forties, healthy in all other respects, and petite – about 5’ even, around 105 pounds. She works 5 days a week behind the bar at a mildly busy restaurant/bar, but is down to 3 days a week throughout November due to doctor’s orders. I know lupus can, but not necessarily has to, be a progressively debilitating disease, and that it’s not an automatic death sentence. We also know that there's no known cause or cure, and that it manifests generally in several different ways, but is pretty much different for everyone in the specifics.
But she’s going to have to make some adjustments to the way she lives now, right?
I vaguely remember a woman in our neighborhood having it when I was a child, and that her family had their entire house modified so that they could closely control temperature and humidity. Is this necessary? And how did friends and family react when they found out? Or did you decide not to tell anyone?
I’d appreciate any “been there, here’s what you’ll see” stories or advice.
I have a very close friend with Lupus. It’s a very variable disease. Some people just get the occasional headache and hot flush. With some follks, it’s really, really bad. My friend is on her second set of kidneys There really is no way of telling how it’s going to pan out. The disease often goes into remission for years at a time. Other times it can mean being stuck in hospital for months.
You’ve already done the major steps (doctor + the Lupus Society), between them they should see you right. There is a really good support group at www.wehavelupus.com which is also full of goodies.
I was diagnosed at 15. My initial symptoms were extreme fatigue, arthritis, a rash on my legs, low-grade fever, and swelling of the tissue in the lungs (which caused painful breathing). I was treated at Children’s Hospital in D.C. My doctor was pretty agressive in his treatment, using huge doses of prednisone and a combination of arthritis medications (I can’t remember the first one I was given, but I was eventually using Voltarin). By the time I was 19, the disease went into remission. I’ve been completely off medication since then. It hasn’t flaired since and I’m now 32.
Last year I had a baby. This can sometimes be difficult because miscarriage rates are higher (I’ve had two miscarriages, out of three pregnancies) and the lupus can come out of remission. In addition, there’s a chemical that my body produces that can basically mess up the fetus’ heart rhythm. If that had happened, my baby would have had to get a pacemaker installed at birth, which he would have had for the rest of his life. That did not happen, and I have a healthy little boy. I didn’t have any lupus-related complications, either.
There are different levels of severity for lupus. Obviously, I’ve done very well with it and haven’t had to alter my life at all (well, except that I can’t go out in the sun without very good protection). When I was flaring, I had to limit my activities (because of the fatigue), and I had trouble walking (because of the arthritis). Someone who has more severe symptoms or who is having trouble getting into or staying in remission would have to make different accommodations for their life.
My one advice would be to stay positive, dont’ dwell on the negatives, and try not to identify with the disease. By this I mean, don’t make it the first thing you tell everyone. Don’t think of yourself as the person who has lupus who also sells real estate (or whatever). My theory is that when this starts to happen, you start to feel invested in the disease and it becomes such a major part of your life that you’re always looking for symptoms and expecting to feel bad. You never really feel good because you get consumed with thinking about the disease.
I’d also suggest that she stay as active as she can whenever she feels like she can. Her overall health will make a big difference in how her body deals with her disease.
I was diagnosed with SLE after the birth of my daughter at 25 and as I’m now in my early 50’s I’ve had it now for quite some time. As has already been stated everyone experiences Lupus differently. I have had arthritic pain, skin problems, lung problems, major fatigue and have been unable to work full time for about 15 years and not at all for the last 6. I am now on dialysis with kidney failure. Try to stay away from Prednisone, it does help but has nasty side effects. I tried coming off it at one time after long term use, and even though I was warned it could cause a bad flare, I did it anyway which is when I developed the kidney problems.
A controlled environment does help me as temperature extremes seems to affect Lupus. Of course your girlfriend should keep out of the sun and get plenty of rest. It’s best not to drink or smoke either. Some people try and ignore their disease and push themselves to do more than they should. This is not a good idea with lupus as pushing oneself only exacerbates the condition. Best advice I can give to her is to listen to her body and only do what she feels comfortable with. The best advice I can give you is just try and be understanding on those days she doesn’t feel the best. Try not to worry, you didn’t say what symptoms she was experiencing but many people can have Lupus and lead very normal lives with almost no symptoms at all.
It was a little scary when I first found out, but it was good to be able to put a name to what I had been experiencing. I did tell my family and friends as they already knew something was wrong with me. My family were ok with it and most of my friends. A couple of people treated me like I had something nasty and didn’t want to be near me at all, even after I explained that it wasn’t contagious, but that was a long time ago. I think most people know someone with Lupus these days.
I would like to add that I have heard that Lupus does improve with menopause for some people.
C3 and jastu, thank you for sharing your experiences. I hope you both are doing well, and I’ll add you two to my prayers. And you’ve made me feel a lot less anxious about this.
The Factotrix’s symptoms right now seem to be limited to fatigue and arthritic-like attacks to her joints. She had a bad flare right when it started getting cooler outside- that’s why we thought it was rheumatoid arthritis at first.
And Spiff, she is exposed to second-hand smoke. Other than the already-known problems with that, does it escalate the lupus attacks?
I’ve been diagnosed for almost a year now, and haven’t really had to make any life altering changes. I’ve been really fortunate to have an understanding boss-there are some days I literally can’t get out of bed, and she’s pretty flexible with my schedule.
Also, if she’s not already, I’d suggest getting some form of exercise, either walking or at a gym or something similar. I know I feel a lot better when I stay active.
The drugs suck. A lot. I’m in the process of switching to a vegan lifestyle in hopes of cleansing my body and getting off the drugs. Hopefully, it works out.
As for telling people, my close friends and family, and most of the people I work with know. Nobody’s ever treated me differently, with the exception of one guy at work who pours on the sympathy. The hard part for me is explaining the constant redness in my face, especially to strangers. I usually just tell them I had an allergic reaction. It’s really none of their business anyways
There really is no way of telling how it’s going to pan out. The disease often goes into remission for years at a time. Other times it can mean being stuck in hospital for months.