Anyone have any information about LUPUS?
Topic: Anyone have any information about LUPUS?
July 19, 2019 / By Cain Question:
I was told this morning that I have lupus, that the form of Lupus i have is in my blood vessels and causing hives. I believe this one means that It is attacking my organs as well. Everyone keeps telling me how sorry they are but when you on meds doesnt it like make lupus dormant or something? can anyone tell me anything else about this? Is it curable? Does the treatment make it dormant, or just make life a little easier?
Best Answers: Anyone have any information about LUPUS?
Aleric | 5 days ago
Lupus cannot be cured, but it can be successfully monitored and managed for most people. You will be followed by a rheumatologist or an internist depending upon which organs are affected.
Most people are managed well and live fulfilling and happy lives.
The article below was written for children with lupus, but it applies to adults as well and is a good general article.
Very best wishes.
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Originally Answered: Does anyone have any information on lupus?
Do you have any of this symptoms:
If your answer is no, you don't need to be preoccupied.
The symptoms of lupus differ from one person to another. Some people have just a few symptoms, while others have many. In addition, there are many different symptoms of lupus because the disease can affect any part of the body. Some of the more common symptoms include:
* Achy joints (arthralgia)
* Unexplained fever (more than 100 degrees Fahrenheit)
* Swollen joints (arthritis)
* Prolonged or extreme fatigue
* Skin rash
* Ankle swelling and fluid accumulation
* Pain in the chest when breathing deeply (pleurisy)
* A butterfly-shaped rash across the cheeks and nose
* Hair loss
* Sensitivity to the sun and/or other light
* Mouth or nose sores
* Pale or purple fingers or toes from cold or stress (Raynaud's phenomenon)
I have SLE as well as Graves Disease. Being officially diagnosed by a Rheumy is the right step, and from then on if you have a good General Practitioner they can look after your Lupus condition in tandem with your Rheumy.
It sounds to me like you have Systemic Lupus which can attack any part of the body it pleases, usually the kidneys, heart and brain (CNS) or it can be mild and just be a nuisance causing Arthritic type pain but without the destruction that RA causes. It can bring on secondary Sjo'grens and cause you to have very dry eyes and mouth. You may get mouth sores especially on the roof of your mouth. You may pee protein which means Lupus is aggravating your kidneys, but as long as the Protein level stays low your kidneys are coping ok, but not as well as they should. It would then be watched over. You may get palpitations and chest pain as Lupus is attacking the membrane that covers the heart area, but that's treatable. You may also start getting migraines and high blood pressure which can mean your brain is being affected due to vasculitis or even small vessel disease. An MRI would then show up multiple white matter lesions. All of this is treatable, and thanks to the advances in modern medicine, Systemic Lupus is no longer a death sentence, I should know as I've reached 62 years young and I'm still out there living life.
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Lupus is a disease that has periods of activity called flares and periods of calm called remissions.
Lupus is autoimmune. That means your immune system is confused and attacks healthy parts of you and sometimes forgets to attack germs. Lupus is treated with drugs that weaken the immune system. Don't take "natural" supplements that "boost" the immune system. This is the opposite of what we want.
There is no cure for lupus. Scientists don't even fully understand the cause, but they are making progress every day. If you follow your treatment plan and take good care of yourself, you can expect to live a normal life span.
The Lupus Book by Daniel Wallace is the most thorough explanation of lupus out there for people who are not doctors. It is medium hard to read. If you get the book, please understand that he describes EVERYTHING that could possibly happen. No one gets everything!
You can also check out the "About Lupus" section of www.lupusflorida.org. There are many handouts that have been uploaded there. www.lupus.org is another useful site.
Here are some helpful tips for managing lupus. (I have systemic lupus with organ involvement. I am nearly 58. I spent 4 years on disability BUT now I work 7 days a week.)
1. Rest when you need to. Pushing yourself makes lupus worse.
2. Reduce stress when you can, learn to manage what you can't reduce. Stress activates the immune system and ours is already hyper!
3. Eat a healthy balanced diet. Our bodies need all the help they can to stay in balance.
4. Get regular moderate exercise. It lubricates the joints, eases fatigue, reduces depression, reduces pain, keeps your heart and blood vessels healthy and relieves depression.
5. Follow your treatment plan faithfully.
6. Learn to say "no" to people.
7. Let others help when you need it.
8. Remember, it's not your fault.
9. Don't listen to people who think they know what you need to do. Lupus is a very complex disease and if it is not handled properly, can cause some serious problems.
10. Practice saying this to yourself many times a day. "What can I do to take care of myself right now?"
You may email me if you wish.
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Are you getting a "butterfly rash" - redness around the bridge of your nostril and fanning out over your cheek bones? it is totally characteristic of lupus. have you ever considered your G.P. at the instant to ask approximately your soreness and to dicuss the potential for lupus? there's a blood attempt which will tell in case you have decreased in length the ailment, so, youthful woman - appointment with rfile for you, to set your recommendations at relax no remember if it is not and to easily ascertain you're nicely monitored no remember if it particularly is. Crossing palms (and feet!)
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Originally Answered: Why would my doctor order a Lupus Profile with no family history of Lupus?
I have Lupus & I truly hope that you do not have it.
No one in my family was diagnosed with Lupus at the time I was diagnosed, after having major surgery. I can remember having Lupus symptoms when I was 3 years old, but no Dr. ever thought that maybe I have Lupus.
Then, a few years later...
My sister came over for a holiday & had the bright red rash across her nose & cheeks that is called a "butterfly" rash because of the shape. I only told her to see a Rheumotologist & did not say a thing about my suspicion. Sure enough, when she went to the Dr., she was diagnosed with Systemic Lupus.
Also, looking back, I am certain that my mother had it, but was never diagnosed.
Unfortunately, it has been more than 50 (FIFTY) years since any treatment has been found.
If you do have Lupus, just read the newest books (less than 5 yrs old) and you might want to start finding info about it on The Lupus Foundations website.
www.lupusfoundation.com or .org I'm not sure.
I heard the most beautiful quote today & I posted notes on my Fridge & computer.
"Life doesn't have to be perfect to be wonderful"
Annette Funnecello wrote that.
She has MS & I feel for her.
Please remember that it is not considered a hereditary disease. If one parent has it, then there is only a 10% chance of any children inheriting Lupus.My personal thought is that people in families are very aware of all the symptoms & indicatoins, so they seek treatment whereas someone tho doesn't know the symptoms would think it might be something else.
Good luck to you.
Remember, there are worse things in life than Lupus.
Try to be upbeat & take one day at a time.