Lupus (Systemic Lupus Erythematosus)


What treatments have been effective for your lupus? Submit Your Comment

Comment from: ignatz, 55-64 Male (Patient) Published: October 24

I find these comments on lupus helpful so I'll add my own. I wasn't diagnosed for several years but I knew something wasn't right since I was always tired and unmotivated. Finally my general physician tested me for autoimmune (immunoglobulin) disease and I was diagnosed with SLE (systemic lupus erythematosus). That was 5 years ago. Treatment is Plaquenil, but not sure it has helped. It hasn't hurt though. Prednisone helps and I've been taking daily 5 mg prednisone for 2 years now. Recently started Benlysta and I think (hope) I'm seeing improvements from it.

Comment from: Victory, 45-54 Female (Patient) Published: August 18

I am a 52 yr old female who was diagnosed with (SLE) Lupus 6 months ago. I was constantly in pain, hips, elbows, fingers ankles and groin and had fevers, headaches and chills and my hair was falling out in clumps. I became very depressed. I went to several doctors who just gave me antibiotics and antidepressants. I finally searched my symptoms which guided me towards Lupus. I asked my doctor if I could possibly have Lupus...a blood test for ANA antigens was done and I basically had diagnosed myself. I am taking hydroxychloroquine twice a day for treatment. I tried, but cannot take the anti-inflammatory drugs. I still try to live a normal and productive life.

Comment from: countrygirl, 45-54 Female (Patient) Published: May 19

I’ve had lupus for years. It’s been manageable with medications. In January I got what I thought was the flu. I was bedridden for almost a week. I had body aches, night sweats, fever, no appetite, and weight loss. I went to the doctor and although I tested negative for the flu, he treated me with Tamiflu. Fast forward to this week. I have had all these symptoms and more; bruising, and one night I woke up in a pool of blood but I’ve had a hysterectomy. I finally got bloodwork done today!

Comment from: Dee, 65-74 Female (Patient) Published: October 08

Low dose naltrexone for lupus has given me my life back.

Comment from: susiem, 55-64 Female (Patient) Published: April 30

Prednisone and plaquenil have been effective treatments for me.

Comment from: Marietjie, 55-64 Female (Patient) Published: January 22

I was diagnosted with lupus 6 years ago. I only use Panamor SR 100 for the inflamation. My doctor suggested Immunadue for the immune system and I also have received scio treatment for 3 years now. This has helped me a lot and I am living a normal life. I have lupus flairs from time to time. When I do I double the dose of the medicine and I am fine again. I also use 5HTP for the depression that's caused by lupus and when I feel 'off' I also double the dose. I honestly believe that the scio treatment keeps me so healthy. When my knee or shoulder joints hurt I rub them with Flexadrin, it brings almost immediate relief.

Comment from: Joc633, 45-54 Female (Patient) Published: November 27

I have found that far infrared therapy is a godsend to me. With doing therapy every day I have been basically symptom free for years, up until this year. Since my flare ups have increased because of stress and my job, the only thing that gives me relief is far infrared. I prefer to stay away from meds because of possible side effects.

Comment from: nana, 45-54 Female (Patient) Published: June 11

I’m a 53-year-old woman diagnosed with lupus at age 24 after the birth of my first son. I’ve been on and off Plaquenil several times. I take Prednisone for pleurisy. I still have some kind of pain all of the time although now doctors say it’s more likely fibromyalgia.

Comment from: Lily, 65-74 Female (Patient) Published: June 08

I've had chronic SLE Sjogren's overlap for decades. Best treatment to date has been four infusion protocol of rituximab / 250mg solumedrol which provides remission for about a year.

Comment from: daisykm, 55-64 Female (Patient) Published: April 30

I had my first attack four years ago and was covered from neck down in hot blistering rash. I was wrongly diagnosed as chickenpox! I was admitted to hospital and then told it was Stevens-Johnson syndrome and I was sent home with no cure or medication. I had fever and extreme mouth ulcers and fatigue. I had a relapse last year and was admitted again with similar symptoms, but this time I acted faster. I was diagnosed with drug induced Lupus, which was caused by an allergic reaction to my high blood pressure medicine, and was referred to a clinical immunologist and allergist who started me on Plaquenil and prednisone.


Lupus is an infection. See Answer
Comment from: maci, 35-44 Female (Patient) Published: February 27

I was diagnosed 20 years ago whilst pregnant with second child. I have tried many meds and some were good. Plaquenil and methotrexate have both helped me greatly but prednisone is a thorn in my side.

Comment from: SAD BUT TRUE, 35-44 Female (Patient) Published: January 13

I was just diagnosed recently. I do not have a regular doctor or any insurance and found that I do not qualify for Medicaid. I went to the ER with fatigue, swelling all over my body, shortness of breath, severe headache, and fever. After their tests they let me know it is Lupus and sent me home. No medicine or anything. I am now having severe abdominal pain on top of everything else.

Comment from: C.T., 35-44 Male (Patient) Published: January 10

I was diagnosed with Lupus a year ago but have had the disease for 5 years. It is a very difficult disease to diagnose. I treated it like something that would go away for so long, I live in Spain so every summer I got sicker and sicker. I did not do anything about my illness until I knew something was seriously wrong so I went to the hospital and was hospitalized with a bad pneumonia and treated for that. I felt better after that but soon the joint pains came again and the following winter the Raynaud's Syndrome for the second winter in a row, so I went again to the hospital and then they figured out that there was something more serious happening to me. First I got diagnosed with Scleroderma, then it was changed to Lupus. I have been on many different types of medications for the past year and not have any serious flare but new symptoms arrive regularly that need medical attention.

Comment from: Sally O' Malley, 35-44 Female (Patient) Published: October 17

My earliest recollection of lupus symptoms was when I was still a small child. Beginning with the onset of extreme neurosensitivities such as migraines, shingles and hyper sensitivity to cold temperatures, symptoms would also cause me to shiver erratically while my lips, feet and hands took on a bluish pigmentation. My diagnoses would not come for many more years. Then, by age 30, after having two children it seems that the lupus decided that it was high time somebody saw Him for the monster he truly was.

Comment from: 45-54 Female (Patient) Published: May 31

I have SLE, Reynaud's, Sjogren's and migraines. I have been on 2 Plaquenil a day for 7. Without this medication, I feel I would need a caregiver as I struggled to get out of bed before I started taking them.

Comment from: 45-54 Female (Patient) Published: April 27

I was diagnosed with lupus nephritis and was treated with chemo drug Cytoxin monthly for two and a half years. I have been in remission for more than seven years, thanks to Dr. Petri in Baltimore.

Comment from: Liz85, 25-34 Female (Patient) Published: March 03

I am a 25 year old female and was diagnosed with lupus at 16 years of age. I have found that managing the condition is about balance. The following are the treatments that I use: 1. Plaquenil 2. Fish oil and consuming fish in my diet 3. Avoiding the sun as much as possible 4. Balancing work, social and exercise with enough rest 5. Psychology and family supports to assist me in my self-management of the condition 6. Good relationship with my GP and specialist

Comment from: 65-74 Female (Patient) Published: February 15

Plaquenil has been a life saver for me. [2 a day] I have been on it for 13 years and it has helped tremendously with joint pains. I was on prednisone once.

Comment from: Mary, 55-64 Female (Patient) Published: February 14

I had a stroke when I was 38 years old, then through the years I had rash, swollen glands, and loss of weight. Finally in 1995 with diagnosis of Reynauld’s syndrome and my doctors found that I did have systemic lupus and also had liver and lung problems. Now they say I have mostly fibromyalgia, and I still am so tired, I ache, and I feel like I have a low grade fever.

Comment from: momberose, 35-44 Female (Patient) Published: July 06

Have had Lupus since I was 15 started with the joint pain and joint swelling. I have gone through the requisite barrage of anti-inflamatories. I am unfortuantely allergic to Plaquinil. I also tried imuran without much relief. Mostly I just deal with it. Recently I have started taking Lyrica. It helps with some of the more generalized pain. It tires you out and can make you a little zoned out sometimes but I have felt better on that for he last month than anything else. It also helps with my back pain.


Lupus Symptoms, Rash, and Treatment See Slideshow
Comment from: vickypurrfect, 25-34 Female (Patient) Published: May 20

I have S.L.E lupus, and I’m 28 years old. I was diagnosed when I was 15. I was put on predinisolone when I was younger, but reacted bad to it. I’m not on any medication at the minute but I have been getting pain in my heart so bad that I have to take very shallow breathes as the pain is so bad. I then feel very light headed because of this.

Comment from: Jane, 65-74 (Patient) Published: February 15

I have had Systemic Lupus Erythematosus for 35 years. Started with a rash and joint pain. It took several years before I was diagnosed. After a lot of searching,I found a doctor who understood the disease and me. I sincerely feel that this is the clue for proper treatment. His care averted serious kidney problems and pain, physical and emotional. So, I urge people to keep searching and not give up. There is help out there.

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