SLE Lupus- Answer from Personal Experience only please.?

Question

I have SLE Lupus and have pain all the time - the skin problems- chronic fatigue- the painful joints. The skin problem has given me an ulcerated leison on my leg that will not heal- the chronic fatigue keeps me doing much or going places. Anyone that has Lupus knows what I am talking about with all the systoms that this disease can cause. My Question is has anyone found a way to combat the effects of the systoms and led a better existence. I am on pain medication but that does not make life better or help with the chronic fatigue. From personal experience has anyone found that they were in the severe SLE stage and found something that made them feel better or even go into remission? The SLE Lupus is the worst one to have, there are several types of Lupus. Again, only people that have the SLE Lupus to answer, I have read everything from the Web so I do not need that type of answer.

Answer 1

I have all the same problems, over the past couple of years since diagnosis I have began to eat really healthy and take all these vitamins, go to a homeopathic doctor, try to do everything right in hopes that it would make my disease go into remission or even disappear, because maybe it really was just food allergies, or a bodily reaction to pesticides.
Alas, my symptoms always came back in full force. I have found that the only way to combat the symptoms fully is hardcore medicines chock full of side effects prescribed by your rheumatologist.
Of course pain medications will not combat your fatigue, it is doing absolutly nothing to combat the disease, it only numbs your nerves.
For me cellcept really helped my SLE symptoms, unfortunatly though I experienced side effects that caused me to stop taking it. Methotrexate works well for some people. If your symptoms are mild plaqunil could work. They even have a new treatment out that is two injections that effect your immune system and are supposed to help symptoms...can't remember the name. Anyway, there are a lot of options out there, none of them great....but there is no magic pill. Just see your rheumatologist and make them give you a prescription.

Answer 2

I consider both to be credible answers. Just in different ways. Information is good. Someone may have a link to a website that I've never found. That's cool. But I can usually do the research on something myself. I like to see personal experiences. That way I can see things from a different point of view. Personal answers give you a different way to learn things.

Answer 3

When my Lupus started to affect my Kidneys my doctor put me on a drug called Cell Cept (Micofenelate Mofetil) It is an anti-rejection medication and right now I feel as though I am in remission. I do not know if it is feasible for you or not as you did not specify any organ involvement.

Answer 4

Try to avoid fluorescent lighting in your home & the work place. Exposure to this can aggravate lupus symptoms. Try replacing them with incandescent bulbs. Get your iron from food sources not supplements. Taking iron in supplement form may contribute to pain,swelling and joint destruction. Try using licorice root tea ( in healthfood stores) to alleveiate lupus symptoms. If your taking any type of steroids, you may find the tea to provide comparable results without being as harmful to your system.