View Full Version : Home Care 101 for Lupus

07-14-2008, 09:03 AM
Home Treatment

Good self-care is essential to managing lupus (systemic lupus erythematosus, or SLE). Learn to recognize your body's warning signs of a flare. Warning signs may include increased fatigue, joint pain, rash, or fever. When you notice any of these signs, take steps to control your symptoms.

Stress may trigger lupus symptoms. Keep your stress level as low as you can.

* Keep your daily schedule as simple as possible.
* Keep your list of obligations to others to a bare minimum.
* Delegate to others.
* Exercise regularly. A daily walk, for example, can reduce stress, clear your head, improve your mood, and help fight fatigue.
* Use relaxation techniques such as meditation, yoga, and guided imagery to calm your body and mind.

Fatigue is common in people with lupus. To fight fatigue:

* Get plenty of rest. Some people with lupus need up to 12 hours of sleep every night.
* Pace yourself. Limit tiring activities.
* Ask others for help. Don't try to do everything yourself.
* Take short breaks from your usual daily activities. Consider cutting down on work hours or getting help with parenting responsibilities, at least during periods when lupus symptoms are severe.
* Exercise regularly. Physical activity boosts energy and helps you stay in good condition. Walking and swimming are good forms of exercise for people with lupus.
* If you suspect that depression is contributing to your fatigue, get prompt treatment from your doctor, a mental health professional, or both.

Take care of your skin. Ask your doctor about the use of corticosteroid creams to relieve skin symptoms that are particularly troublesome. If you are bothered by the way a lupus rash looks on your face or if you have scars from lupus, you can try makeup, such as Covermark, to cover the rash or scars.

Ultraviolet (UVA and UVB) light triggers disease flares in up to 70% of people with lupus.13 Exposure to ultraviolet light, as from sunlight, can trigger or start skin rash, joint pain, or fatigue, or it can make these symptoms worse. To minimize your exposure to ultraviolet light:

* Avoid the sun. If you must be in the sun, cover your arms and legs, wear a hat, and apply broad-spectrum sunscreen (covering both UVA and UVB rays) with a high sun protection factor (50 SPF or higher) to protect your skin. Reapply sunscreen after swimming, sweating, or toweling off. Experiment with sunscreens. Some may irritate your skin or wash off too easily.
* Avoid going out when the sun's rays are the strongest. In most areas, this is between the hours of 10 a.m. and 3 p.m., especially during the summer.

Good general care is essential. A healthy lifestyle not only improves your quality of life but may also reduce your chances of having more frequent and severe flares. Good care includes:10

* Getting vaccinations to help protect you from illnesses such as pneumonia and the flu.
* Treating high blood pressure.
* Taking medicine to help prevent osteoporosis caused by corticosteroids.
* Preventing plaque in the arteries (atherosclerosis) that can be made worse by corticosteroids.
* Protecting yourself against infections you can get more easily due to decreased immune system function.

Other good health habits that will help protect you include:

* Regular exercise.
* Education about lupus and self-care.
* Not smoking. Studies show that smoking makes symptoms worse in people with lupus and may decrease the effectiveness of some medicines. Experts suggest that people with lupus avoid all tobacco products.14
* Eating a healthful, balanced diet.
* Regular dental care.
* Regular eye examinations by an ophthalmologist.
* Developing a support system of family, friends, and health professionals.

Some people with lupus are sensitive to antibiotic drugs called sulfonamides (sulfa drugs).15 These include Bactrim, Septra, and many others. Your doctor can prescribe drugs that do not contain sulfa, if needed.

If you have lupus and are a woman in your childbearing years, pay special attention to pregnancy-related concerns, both before conceiving and while pregnant. Most women with well-controlled lupus can take birth control pills if they choose that method of birth control, and for most women lupus will not interfere with becoming pregnant or with pregnancy.

Home treatment and regular checkups are sometimes sufficient for managing mild lupus or for periods of remission. Be sure to have your doctor monitor your condition on a regular basis. These regular checks are important to detecting and treating progressive organ damage.

It is important that the people in your life understand what lupus is, how it affects your life, and how you can best cope with it. Help them understand your limitations and needs when your symptoms flare. Support groups are great places to learn coping strategies from others.

Information obtained from www.lupus.webmed.com

07-14-2008, 10:46 AM
That was such excellent information. I made it a sticky!

Peace and Blessings

07-17-2008, 07:40 PM
Thanks Oluwa for all the info. I think that's good info for almost any ill condition :D .

11-19-2008, 09:16 PM
Thanks for the Advice I have Dr's Appointment tomorrow at 1:45 i wrote everything down that has been going on ........

thank you

11-19-2008, 09:50 PM
Please let us know how your doctor's appointment goes and we will be more than happy to help you with anything that you need.

Peace and Blessings

12-06-2008, 06:15 PM
I am new and stumbled on this post and I am actually stuck in bed feeling yucky but this post lifted my spirits! It gives me an idea of what I can do and what my family can do in order to make me every day life that much healthier.......thank you! :rainbow1:

12-07-2008, 08:28 PM
I am saying "you are welcome" on Oluwa's behalf. She will probably be along shortly. We are happy that this post was helpful to you. That is why we are here :lol:

Peace and Blessings

07-02-2009, 08:32 AM
what is everyone's opinion on alcohol consumption & lupus flares?


07-13-2009, 07:04 AM
Well Day,
Judging by your picture and your question you are probably a young lady just like myself (I am a 21 year old college Junior) and you don't want this disease slowing you down. Well, I don't think it has to haha. I think as long as you are feeling good drinking is fine. But I would not recommend pushing it. For instance, stress triggers my flares, and finals this past semester were really tough for me, as soon as I felt my symptoms coming on I opted for movie nights instead of bar crawls. And I made sure the nights I went out I was able to sleep in the next morning.
I hope your enjoying your summer :party:!

07-13-2009, 08:13 AM
As far as alcohol consumption-I have a drink or two from time to time. Sometimes a beer (I love Guinness) or a mixed drink/shot. It causes me no problems, and my Dr. has no objections to it as long as it's in moderation. Of course, you need to be aware that alcohol could have negative effects if you are taking certain pain meds or anti-anxiety meds. Also, if you take alot of Tylenol or other meds containing Acetaminofen, you will need to be careful because the combination can cause liver damage.

10-29-2010, 05:00 AM
question about uv lights what should you avoid. can spotlights hologen lights effect you. confussed?

10-29-2010, 10:06 AM
Hi tracy,

I can't speak for everyone but I will tell you that they do affect me. All types of UV lighting bother me, even those you are talking about. Heck, I have to wear sunscreen to go to the grocery store so I am on the extreme end. Each person can handle different amounts of UV rays so it all depends on you. All I know is that I have to avoid them all

10-29-2010, 01:45 PM
Excellent suggestions!! But I'm having a lot of trouble with breathing right now and am trying to find some light exercise that doesn't make me breathless. And one deal I made with myself that I totally suggest is setting a goal of only two things that truly need to get done that day. I found that I would have a good day and just go crazy trying to get things done. Next thing I'd know, I'd be in the ER with either breathing problems or some other goofy illness. I also started doing one load of laundry each day. Wow, you really can stay ahead of the game this way! I admit that I feel guilt for not having the cleanest house or doing more with my son, but I honestly feel better and we all know that's a hard prize to win!

10-29-2010, 03:12 PM
Serand4, do some stretching exercises or anything you prefer, 3-5 reps each. Build up very slowly you have to build your breathing capacity slowly and once you build it up; you can do more.

Linda From Australia
12-29-2010, 04:44 PM
I am just bumping this to the top again because there are a number of new members who would appreciate the advice.

01-25-2011, 10:49 AM
I have a question regarding the Sun/UV lights
It took a couple doctors 6 years to diagnose I had lupus, a couple reasons was I didnít have the butterfly rash and the sun doesnít bother me! They called my diagnoses a odd one as I have the positive ANA but I donít show any physical signs, but I do have the fatigue, muscle/joint pain, fever, hot flashes and so on and on.
I love the Sun as soon as I step out into the sun I feel revitalized is this normal for someone with SLE Lupus?

01-26-2011, 12:55 PM
One of the things that we have to remember about this disease is that it does not affect any one the same. Also, as we learn more about the disease, we also learn that the disease manifests itself in ways that have not been previously seen before. So, in answer to your question, it is quite possible that you do not share the sun sensitivity that many of us share and that you can still have active Lupus.

I always say that we must pay particular attention to how the disease affects us personally, as we will not be like the next person with the disease. I would suggest, however, that even though you do not suffer from sun sensitivity at this time, that you still take precautions when in the sun. One thing that Lupus does do is CHANGE; the symptoms you have today may worsen, or have new symptoms added tomorrow, or go away only to be replaced by a completely different set of symptoms.

I hope that I have answered your question. Please let me know if you need anything further. We are all here to help you as much as we can.

Peace and Blessings

02-03-2012, 03:20 AM
I realize now that the sun does affect me. I thought I had an allergy that caused the rashes. I had the fatigue, muscle pain, itching, and aches, but attributed them to aging. I am 64. I wear sunscreen now and try to limit my sun exposure which is very hard. I love to walk and am an avid gardner. I realize that stress also triggers the flares. I was just diagnosed in December due to diabetic blood screening tests that led to many more tests. I have probably had Lupus many years, but was not familar with it or the symptoms.

The Survivor
08-31-2012, 03:44 PM
Its really difficult for me to tell whether the sun rays harm me or not. At this very moment I do notice a little rash on my left middle finger and its burning hot outside. I was out there for a few hours without any form of protection from the sun. Is there a test I can take to see if the UV rays are harmful to my body or not? And for me the most challenging thing with lupus is watching your diet. Does anyone else struggle with that?

07-26-2013, 07:13 PM
awesome info ty very much