Does anyone have lupus? Wanna talk
I do just diagnosed no one to talk too
I don't like it
Hi there, I was just browsing and thought this thread looked a little lonely, I don't have lupus but I thought I would look up some info that you may have not read. I'm sure you know from your doctor all the medical stuff so here is what mayo says about alternative remedies. http://www.mayoclinic.com/health/lupus/DS00115/DSECTION=lifestyle-and-home-remedies
My 25 year old daughter was diagnosed with what they think is lupus, high ANA tests, but they "can't be sure." They think it is some type of auto-immune disease. She is on high doses of steroids, and had tapered off to a low dose, then a week or so ago, she developed a full-body lesionar rash. Steroids aren't working for it, and doctors are not sure what to do. She has gone to a rheumatologist, dermatologist, etc. She is in Taiwan. I would be interested in hearing what type of symptoms you have, what medicine(s) they are using to treat it, and any other "strange" symptoms you have. Also, what tests they used to diagnose it. If you don't mind sharing, I would love to hear from you. Also, I wish you the best of luck. My sister gave my daughter a book about living with lupus titled, "You Don't Have to be Healthy to be Happy." Was encouraging to my daughter. 🙂
My oldest daughter was diagnosed with Systemic Lupus in 1988. She had symptoms that can match many of the auto immune diseases. Within her first week she could not turn a door knob or hold a hair dryer and couldn't hardly get out of bed. She also developed the tradional butterfly rash on her face. The
top of her head would hurt so bad she thought it was going to come off. She would get the welts and swelling in her face, that made it look like someone had hit hurt many, many times. Swelling over an eye that literally stuck out half to 3/4".
I took her to a MD in Washington State who also was combining Traditional medicine. We went through numerous tests and over the next months did a lot of MD controlled cleansing and nutrition. These didn't correct the issue, but was very evident it helped. She had to become very nutritional oriented which has had a lot of influence on whether she had flare-ups or not. She has recently been tested for Gluten Intolerance and very definitely Gluten is a problem. It has been suggested that 90% of Lupus patients have varying intolerances of Gluten. Many quite extreme.
Creating a lifestyle of less stress and getting a proper amount of rest are extremely important. We found out early in her Lupus experience that Alfalfa was a no-no, as you probably already know. She then got pregnant with twins, which was sort of a kick in the pants, as you are a high risk patient in pregnancy.
Numerous needs of more rest for her going through that. Babies were born early, which is expected in Lupus patients. Everything went fine and twin girls are now going to be Seniors in High School.
We went through all the initial testing for Lyme disease and many other things with auto-immune like symptoms, but ultimately the tests from UCLA Med. Ctr. determined it was Systemic Lupus.
To this day she has spent many hours researching and combining MD and traditional therapy's and treatments to help her Lupus.
When she was diagnosed in 1988, there wasn't a lot of helpful information, mostly all negative as far
as living very long with Systemic Lupus.
I, as her father, was not willing to accept that totally negative picture that was painted and set out to find whatever it was that would help. Even though there are no knows cause's that I know of.
Again, we found others that weren't willing to adjust their life style and have gone through way more trials with their Lupus, because of those decisions.
A person has to be as positive as possible and not give in and let this disease win. Most individuals are different in life styles and the history of their life. My daughter has never drank alcohol or smoked, even
though it was not strictly forbidden, that was just not something she ever did, and which was best for her and her future challenges.
She still has to take a small amount of Prednisone to help control some slight symptoms, but she is grateful that she has been able to control the hugh flare-ups she use to have. Good Luck & God Bless
Hi all, a little more positive story here; diagnosed with SLE in 1997, told it was serious enough that my lifespan would be much shorter. Had various treatments (methotrexate, prednisone, and was put on plaquenil). The plaquenil, once it kicked in (about 6 weeks) really has kept it under good control. Some flares, lots of various infections including MRSA, and some kidney and heart damage, and a blood clot once, but I am hanging in there. Everybody is different, and that is one of the hardest things about this disease: your symptoms will not be like anyone else's, and what works for someone else may not work for you and vice versa---a maddeningly individualized disease. All I can say is what has worked for me:
---to listen carefully to my rheumatologist, and to change rheumys when it was warranted. Second opinions are fine, but sticking with one good doctor and following her or his advice is the ideal
---to stay strictly out of the sun; if I am 5 minutes in the parking lot to the car unprotected, I will start a flare the next day. Some people are less sunsensitive than this, but a lot of lupus patients suffer because they aren't aware of how even little bits of sun exposure can hurt
---plaquenil, faithfully, never miss a dose; keep watch for retinal toxicity of the eye, a rare but serious complication of long term use (annual ophthalmology checkups are a must)
---aspirin, daily small dose, and as soon as I feel a flare coming on, I kick it up. Not NSAIDS, but real live aspirin. Once during an H Pylori infection, I had to stop taking aspirin and thought I was going to go nuts with the increased waves of pain and inflammation.
---a skin salve called Lupicare for the lesions and facial (and other) swelling--I have used it around my eyes when they swell up to the size of fists, and it helps, takes a few days but immediately feels better. YMMV, of course
---SLEEP is crucial: at least 10 hours a day for me, and preferably 12 as my doc suggests
---gentle exercise twice a day--yoga and indoor swimming are perfect, and a fellow sufferer I know prefers walking (sunprotected of course).. Some say to lift light weights for long reps, but my joints won't tolerate that. Slow calisthenics are good---sit ups, push ups, lots of stretching.
---my back ached a lot for a while so I got a gravity hanger, inversion boots, whatever you call it--this helped a great deal and I go back to it regularly
---did I mention SLEEP, and be willing to take a powernap as needed? Rest often during the day. lupus is an ada disease and a reasonable accommodation is that you have to take frequent rest during the day.
---keep stress under control in any way you can.
---I went dairy free and gluten free and not only lost excess flab but have fewer flares; I also backed off the wine in the evening. Obviously, don't smoke.
---attitude. Lupus is bad, no question about it. But your mindset can either make it worse for you or better for you; I choose to make it better by keeping in mind all the things I *can* do, and doing them, not denying the bad truth of this but also not giving it any more power over me than it has to take. When in flare I keep telling myself, "ok, this will not last forever, you can wait it out"---and when not in flare, "ok this won't last forever so you'd better enjoy the good times"! You can definitely have a happy and good life with lupus, and I intend to prove it. Good luck to all. --A.
i have lupus for about 22 years, have questions regarding methatrexate if any is taking this medication?
I have had lupus for 5 years and diagnosed 3 years ago. I am still learning about it everyday. I have a great doctor and he really has helped me. I am on plaquenil and started feeling better within a few weeks. Sleep is the main thing needed when you have lupus.
36. Have had lupus since 19. Happy to talk