View Full Version : Help needed, want to know more about lupus
I just turned 25 on the 18th and I was diagnosed with SLE back in October. I have discord lupus and problems with my blood. Everything seemed to be fine, the symptoms were gone after I started to take prednisone and plaquenil. Once I felt better, I started to go back to work again, only 3 hrs on Monday, Wednesday and Friday. I guess going back to work after 2 months of medication wasn't a good idea. My lupus is active again, I had a feeling on Monday that things are getting worse after I saw a counsellor. I sometimes feel pressured by the insurance company to return to work and the agent wanted me to work daily and to increase the working time by 1hr each week. Yesterday, I called the agent again for the 2nd time and insisted that I can't increase the work time. She made me feel like I didn't want to get well, but I was having trouble telling her that I wasn't feeling well. I was crying during the call, I felt sorry for myself that I wasn't feeling well, I can't explain to her why I can't be on the phone for 3 hrs. I am glad that I cried at work, everything was so understanding and supportive at work. I finally had a good cry, my first cry. Once I started crying, I wasn't able to stop.
I am still clueless when it comes to my physical condition and lupus. I read a lot of information online about lupus, but I can't apply the knowledge. It took me about 2 weeks to accept the fact that my condition is getting worse, that the rash on my hands are worse, I am losing more hair than usual. I wanted so badly to be fine, that I will always find some excuses when people tell me my hands are red or I'm loosing my hair. I finally accepted the facts and went to see my rheumatologist, who confirmed with me that my lupus is active.
Does the flare occur often? How long does a flare normally last? What to do during a flare? How to cope with lupus? Did anyone change their diet due to lupus? When to return to work? And most important, how do you know when there is a flare?
I still can't tell my physical limitation, I am so confused. I want to learn about your experiences, please add me to your msn if you have msn, I would want to chat more about lupus.
12-23-2005, 05:49 AM
Winnie, sorry you are going through such a rough time. Dealing with lupus can be so difficult and hard for others to understand. I go through what I call intense grief spurts every so often when I greive how much my life has changed since getting sick. I have had to cut beack at work too. Luckily my boss has been accomidating (for some reason she thinks I'm valuable enough that she doesn't want to lose me). Is there anyway you can get your doc to help with convincing your insurance that you are not ready to increase work hours?
As far as flares go, how often people have them really varies from person to person. I'm not sure what constitutes a flare but I think it is when your lupus is active and you are having severe symptoms. I say that I am having a flare if my joints are painful and swollen, I have fevers, and when I have my rash. Maybe someone else will have more info than me. Take care and you have found a great forum for support and information.
12-27-2005, 12:33 PM
Welcome to a place where we all understand the hellish days!
Winnie, I'm so sorry you're having a hard time right now, and hope things have improved since you posted. This crazy condition is different for each of us. One common thing - flares are unpredictable and can last varying lengths of time. Sometimes they come and go quickly, other times they hang on a bit.
Stress can make it all worst - I feel so bad for you, going through such a difficult time with your insurance wanting you to work! THat can only make it worse. It sounds like your co-workers are supportive, maybe your human resource department or your supervisor can intercede for you?
Discoid lupus is a bit different than the SLE I have, but the fatigue and pain are, as far as I know, very much the same. Have you looked at www.butyoudontlooksick.com ? It has a wonderful set of resources and a story you can share with family and friends - "The Spoon Theory." It explains so well and so clearly about the ups and downs. Take a look at the various resources linked on this site as well.
Do you have a rheumatologist ("rheumy") that you like? That can be SO very important. Don't "settle." Find one you can talk to. And...I'd be remiss if I didn't say stay out of the sun - wear a broad brimmed hat whenever you go outside. Even on cloudy days, there is a lot of UV rays in the air, you need to protect from those - they can cause a flare as well.
Know that we'll listen and offer what support we can, Winnie, that's what we're all here for -- supporting each other and learning from each other.
12-29-2005, 08:13 PM
When Lupus symptoms appear, it's called a "flare." These signs may come and go. You may have swelling and rashes one week and no symptoms at all the next. You may find that your symptoms flare after you've been out in the sun or after a hard day at work or if you have been under stress.
Even if you take medicine for lupus, you may find that there are times when the symptoms become worse. Learning to recognize that a flare is coming can help you take steps to cope with it. Many people feel very tired or have pain, a rash, a fever, stomach discomfort, headache, or dizziness just before a flare. If you can learn to recognize the signs of an impending flare, you might be ablt to take steps to prevent flares or reduce their severity. Some steps might include limiting the time you spend in the sun, getting enough rest and quiet, exercising regularly but moderatlely, or eliminating stressors in your life. Infections can cause flare-ups as can surgical Procedures, Pregnancy, Sulfa drugs, Birth control pills and Radiation therapy.
Doctors and patients have long wrestled with the difficulty of defining and quantifying a flare in Lupus Over 60 different systems have been devised to attempt to clincally assess Lupus activity. The reason that it is difficult to determine or assess a lupus flare is because it is very difficult predicting when a lupus flare is going to occur.
So, the best management of a lupus flare is to try to avoid it altogether. There are certain environmental factors that may contribute to exacerbation of lupus as I have outlined above.
Stress and the influence of stress on the immune system is an area of active investigation. It has long been felt that excessive physical and psychological stress may affect the immune system and could cause or affect activity of SLE.
Pregnancy was previously thought to commonly cause a flare of disease, and patients were often counseled to completely avoid pregnancy. Recent studies, however, show that pregnancy may not be an independent risk in the activity of SLE.
The toll of diet in lupus flare has been extensively studied. Although some patients have reported flares after eating large amounts of certain foods (especially those high in psoralens, hyrazines and a compound called L-canavanine), these compounds are not generally present in large amounts in a typical diet. In general , a well balanced, low fat diet is recommended.
Certain drugs are well known for their ability to precipitate a lupus syndrome, so-called drug-induced lupus and spontaneously occuring SLE are necessarily the same disorder. In most instances of drug-induced SLE, the syndrome resolves with discontinuation of the offending drug.
Can medications prevent a disease flare? In some instance medications may help to minimize clinical symptoms. For example, in some patients, a rising erythrocyte sedimentation rate or falling complement levels (two laboratory tests that may be useful in assessing disease activity) may herald increased disease activity prior to the onset of clinical symptoms. A change in therapy may help to prevent a clinical flare of disease syptoms. A recent short term Canadian study suggested that continued use of hydroxychloroquine in patients with quiescent SLE might be beneficial in preventions of clinical flare.
If a flare of disease does occur, treatment and management are highly individualized as the disease is different in each patient, and dependent on the nature and severity of the organ system involved.
For your type of Lupus (Discoidal), you may only need the use of topical steroids. Pleurisy can often be controlled with the use of a nonsteroidal anti-inflammatory agent. Protein in the urine or central nervous system involvement on the other hand may require more extensive and potent medication (high doses of oral corticosteroids or immunosuppressive agents.)
So, there are no set answers to your questions about flares. Knowledge of your body and an ability to recognize the factors that might cause a flare are your best way of dealing with them by avoiding them!!
I wish you the best