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My lupust started in a very unusual presentation. First I lost vision in my left eye followed by severe weakness in my arms and legs and then lost vision in my right. The neuro opthomologist diagnosed me with bilateral optic neuritis and the neuro diagnosed transverse myelitis. I was given a few months of solumedrol treatments then IVIG treatments for 6 months. My sister has sle so my mom wanted me to rule it out and it has been known rarely to produce this, so I went to the rheumi to rule it out. The neuro didnt know what was causing it. He said it wasnt MS. He said he has tested me all he could and short of an autopsy didnt know what else to try.

My rheumi took my history and did extensive bloodwork. My bloodwork was fine with the exception of my anemia. He made me a follow up appt for three months. I actually was planning on blowing it off since I was really tired of going to dr's at that point only to still have no idea what was causing all of my pain, numbness and well my body had seemed to turn on me. My boss and my mother insisted that I keep the appt so I did. He ran all of the tests again and this time even though my ANA was still negative my ro/ssa was strongly positive. I had other indications too. My white cell count was elevated as well as other things. At, that point I was taking 40 mg of prednisone a day. With my eye problems, we didnt feel plaquanil was a good choice. I stayed with the prednisone as long as I could. Then the joints just started getting to bad, I was getting costrocondritis and pleurisy. I also managed to fracture 2 ribs.

He put me on methotrexate for a year. I did see a little improvement, but it just never seemed to have any impact. My bloodwork continued to look bad, along with eventually having a strongly positive ANA. Then I got the shingles and my liver count went through the roof. They took me off the mtx and put me on Cellcept. My kidneys started to decline. I had had rbc's in my urine from the start. A urologist did all the tests to make sure it wasnt bladder cancer and sent me back to the rheumi..I took the cellcept for about a year. My legs continued to swell to pitting edema from below my knees. I have a huge bakers cyst on my left knee that really gets bad if I am on my legs too much. I have now developed hypertension. My bp has been getting up to 170/100 and I am now on 2 bp meds to help control it. It still hits borderline but has stayed below 140/90. My last urine had red cell & white cell casts as well as protien. I am now on monthly infusions of cytoxan. We are hoping this will get my lupus under control. I have many swollen lymph nodes (not lymphoma, we had that ruled out by an oncologist). I also have an overlap of Scleroderma which is also diffuse and is shown to be invading my left lung. It has so far effected my legs, both arms, my chest, back, hips and face. My hands are starting to swell to. Some of it is probably due to my kidney problems as well.

Anyway, this has all been within the last 3 years. Prior to that there were signs that I blew off, like days where my skin would just be on fire. Alot of stomach problems (since I was 16). I have always broken out in a rash when I am in the sun. The sun actally makes me break out is hives. I had to have a hysterectomy due to bleeding problems 6 years ago. Looking back I suppose there were signs. But once it got active, it has never slowed down. I am really hoping this med will have some effect and put it into remission if just for a little while.

Dallas TX
Hi, everyone. I was diagnosed with lupus in April of 2004, but I believe my first symptoms started in 1994 when I was 26. I just remember being really achy and feeling sick in a general way one Saturday. My joints hurt, the lymph nodes in my neck were swollen, and I had all these little red dots on my skin. Also, before this day, I had never had any allergies in my life, but after this day and ever since, I began to have itchy, burning eyes, a lot of sinus problems, and itchy skin. I also had these blister-type things on my fingers that had a red-purple blood spot in the middle of them. I went to my GP, but he had little clue as to what my problem was. Went to a dermatologist about my skin, he told me I was allergic to fabric softener. I actually wondered if might have HIV and had a test done, which was negative. I was prescribed all kinds of creams for my itchy skin, but nothing helped until I was given a dosepack of prednisone. All my symptoms went away magically and stayed gone for years.

Around 1999, I began feeling like I had a lump in my throat all the time, like something big was in there partially blocking my throat. The doctor said that all she could see was some inflammation and swelling. The swollen mucous membranes were what made me feel like I had a lump in my throat. I was prescribed a steriod spray, which worked well. Around this same time, I began having nosebleeds. My nose had never bled in my life, then bang, having a nosebleed almost every morning. My doctor told me my membranes were dried out which made them easy to break and bleed, so I tried moistuizing them with humidifiers and a spray. The membranes in my nose were dried out, but the question was why? The nosebleeds tappered off in a few weeks.

Months later, I began experiencing lockjaw, which freaked me out. I would just be talking or eating or whatever, and my jaw would lock open. No pain. It might stay open for a few minutes or an hour or two. I had none of the conditions that made your jaw lock up, so my doctors were stumped. This symptom also mysteriously stopped happening after a few months.

I started getting what I call "lupus acne". I got these bumps on my body that would stay inflammed for weeks and would not go away or heal like normal acne does. And they would return again and again in the same spot. There are some on my legs and arms right now that have come and gone over and over since 1999.

Most of this stuff quieted down and nearly stopped for several years. In October of 2003, immediately after I was in a car accident in which I was unhurt, but my car was totaled and I was extremely traumatized and my nerves were shot, a whole cascade of symptoms started. My scalp started to itch, and large red pimples sprung up and I had extremely heavy dandruff. My hair began to gradually fall out from the root. I began to see blood in my stool on a regular basis. I had a hard time getting out of bed in the morning because my ankles had stiffened up overnight and hurt. The long bones in my arms and legs ached. I started getting so tired so early in the day. The insides of my ears were raw and oozy and scabby. I lost most of my appetite. My skin, hair, and mouth were extremely dry. I got this red, circular rash along my jawline and on my arms and back and my skin was red all around my eyes and nose. The tiny red dots on my skin returned, along with mysterious bruises and purple splotches. And I began itching again, all over, all day.

It's funny, but of all the symptoms, it was the itching that was the worst. Even if I managed to get dressed and groomed and felt pretty okay, the itching was always there. It got to where all I could think about all day was the moment I could go home and take some Benadryl and go to bed and not have to itch and keep myself from scratching like a maniac in public.

My GP thought I had an allergic rash and a scalp infection and gave me antibiotics, which improved nothing. About 6 months after all this began, I was diagnosed by a dermatologist in about 5 minutes. He took one look at the list of my symptoms, examined the skin all over my body and my shedding hair and told me he thought I had lupus. He ran the ANA test, which virtually confirmed it. He refered me to a rheumatologist, who ran all the blood and urine tests that showed my immune system had gone berzerk. I had a kidney biopsy that showed I had a moderate amount of damage from nephritis, so I have to watch my kidneys from now on. They are doing well.

After a long spell on prednisone (I started at 45mg in 2004 and I am down to 2mg a day), my lupus has been under control for over two years. The prednisone along with plaquenil seem to be doing the trick for now.

Lupus is one long, weird trip, that is for sure. But all but the worst cases can usually be controlled so that you can live pretty normally. I guess the years will take a toll on anyone with a chronic disease, but you can cope by having a good support system and being an informed patient. Best of luck on your trip! :)

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