There is a big connection between stress and lupus. Although it doesn't actually cause lupus, it certainly exacerbates it. An article from 2004 found that high intensity stressful events, such as losing a family member, were not associated with worsening of disease activity. However, what they did find, was that daily chronic stress was associated with worsening of lupus activity.
Learning to manage stress is very important. Developing a sense of self-efficacy and a belief that one can perform certain behaviors to achieve specific health related goals, optimism and acceptance of lupus -- these are all positive psychosocial adaptive mechanisms for one to develop.
Having a group where you can learn some of these techniques is a useful way to manage any chronic disease. There are a variety of techniques such as guided meditation, visualization, deep breathing, acupuncture and of course exercise which is one of the best things for stress reduction. 15 to 20 minutes a day should be sufficient.
Cognitive behavioral therapy with a therapist may be needed in some extreme cases but generally group sessions are a great way to learn some of these stress management techniques, while at the same time sharing tips and experiences.View Thread
We keep putting stuff into our bodies that we shouldn't be and often we put too much. Caloric restriction or fasting actually helped Lupus in rats but I wouldn't recommend it for everyone. Once in a while it may be helpful though. However, prednisone makes you hungry so trying to get on the lowest dose of Prednisone is what you should aim for.
There are good fats and bad fats. Bad fats are the saturated fats such as animal fats, butter, lard etc. Good fats are unsaturated fats of which there are 2 types: Monounsaturated and Polyunsaturated. Monounsaturated fats are not bad in small amounts. They come from foods such as olive oil, avocados, almonds, peanuts and walnuts. Polyunsaturated fat comes from foods such as fish, seeds, flax seeds, soybean, walnuts and leafy greens. Within the polyunsaturated fats, there are Omega-3 fatty acids which are anti-inflammatory fatty acids.
A study published in 2008 showed that in humans, there was a big difference between the placebo group and the omega-3 fish oil group. There was a clear improvement in SLAM and BILAG -- which indicate how active your lupus is. So this was the first good published study that shows that omega 3's can make a difference in lupus. Omega 3's are the only 'good' fat to absorb into the body, and fatty fish are good although a lot of fish these days are tainted with mercury. A guide to which fish are safe can be found at: http://www.nrdc.org/health/effects/mercury/guide.asp
A lot of fish is farmed and farm fish don't have as much omega 3's as wild fish. This may have something to do with the fact that wild fish are more active, while farm fish don't move around as much. Another consideration is that wild fish is more expensive.
There are some good fish oil supplements made from wild fish because they extract the mercury out of the fish oil, however you need a lot of it to make a difference. One fish meal is probably equivalent to 9 or 10 capsules of fish oil.
One must be careful because some people have shellfish allergies and lupus patients especially seem to have more allergies than non-lupus patients because their immune systems are very activated and it's the immune system that causes allergies.
You should have about 4 grams of omega 3 fatty acids and there is also a prescription strength omega 3 called Lovaza (it's 4 grams) which is approved for the treatment of high triglycerides and low HDL.
Other foods that are rich in omega 3's are green leafy vegetables, soy, tofu. Don't consume soy and tofu in excess because they have estrogens in them and in women, breast cancer is a potential issue even though there is no conclusive evidence, it is still theoretically a risk. We are still trying to figure out the correlation between estrogen and lupus, so soy and tofu are ok in small amounts.
Some eggs are enhanced with omega 3's and whilst there's a huge cholesterol scare with eggs, they're not that bad. There are some good qualities in eggs and they are a decent source of protein.
Avoiding gluten rich foods can be beneficial. Gluten is found in wheat, rye barley, and it seems everyone loves bread, croissants, pasta etc, however this may not be good for you because these are insoluble fibers and proteins. They are very hard to digest and therefore are taking away precious energy resources. Since your immune system is already overactive in lupus it's already using up much or your energy and if you add hard to digest foods to that equation -- foods which not only take away energy resources but also aren't good for you -- you will increase fatigue. This is why I strongly recommend avoiding gluten rich foods.View Thread
You are not responding to the oral supplementation. Perhaps you are not absorbing it through your GI tract and may need a work up for malabsorption syndromes. IV formulations are not easily available. However, a form of oral vitamin D, called rocaltrol or activated vitamin D is available and may help your situation. Lastly, mild sun exposure of about 15 minutes can provide up to 10000 units of vitamin D.View Thread
One of the most important strategies in managing Lupus is exercise. Leading a sedentary life can lead to wasting away, muscle weakness and osteoporosis. Those who do exercise regularly have stronger muscles and flexibility and a better sense of well being, as well as being able to deal with daily stress and environmental triggers. In addition, getting your heart racing is good because it gets the blood to flow through all your tissues.
A 2003 study showed that people who exercised regularly did much better than the group that was just given regular care.
Good ways to start are yoga, pilates, any type of isometric or stretching exercises which don't put too much stress on any one joint. You could then graduate to walking 15 to 20 minutes a day. I would never recommend exercising to the point of pain, but rather a gradual, consistent and regular regimen will reap the most benefits.
Do not exercise inflamed joints as this can exacerbate the disease. For example, sports such as weight training, golf, tennis, anything that puts pressure on an inflamed joint should be avoided.
If you can develop a consistent exercise regimen that you stick to, you will see an improvement.View Thread
All Lupus patients are at risk to get antiphospholipid antibody syndrome. There are few warning symptoms in this disease and about 30 to 40% of all Lupus patients have antiphospholipid antibodies out of which one third develop complications.
It acts as an anticoagulant, in turn leading to blood clots, strokes, heart attacks, miscarriages. This blood clotting can also effect the lung in a complication known as pulmonary embolism which needs to be checked for in every Lupus patient.
If you have it, you should be taking precautionary measures by taking one baby aspirin per day.View Thread
Steroids are produced in the adrenal gland and you need some amount of steroid hormone in your body at all times. Your body normally produces 7.5 mg of prednisone equivalent cortisone. As steroids inhibit the adrenal glands, some patients who have been on steroids for 20 years are not producing adrenal hormone because their adrenal glands have shut down, they not producing cortisone. To get someone like that off steroids is very difficult because your body needs some steroid. At times of stress you're going to need more steroid, you may not like it, but you'll have to increase the dosage because the adrenal gland which would normally have kicked in is not functioning correctly. Also, if you have an infection of some sort, normally your adrenal glands would produce more steroid hormone, so in times of illness you may need to supplement it.
The glands can be stimulated and one way we can do this is by going on an alternate day regimen. What we try to do is cut down from say 8 one day, to 7 the next day, going back to 8 again, and then 6 the following day and so on. The idea is to slowly coax your adrenals to start producing a little bit of hormone. Sometimes on these alternate day steroid regimens, your adrenal gland may start working on the day that it doesn't see any steroid. Sometimes there's an autoantibody working against the adrenal gland in which case it's not going to work. If you have antiphospholipid syndrome, the adrenal gland gets infected and it's no longer functional. So if you have a functional adrenal gland, most people should be able to get off steroid, but it takes a really long time.View Thread
Yes, HRT is safe since they're not high doses of hormones. There was a clinical trial called SELENA which looked at oral contraceptive hormones, which are higher doses than HRT and they found that they did not trigger any flares in Lupus, so sex hormones especially hormone replacement therapy can be used in Lupus.View Thread