Living with lupus

[adymond]

Anyone know someone living with lupus or actually have lupus?

[slicknick131]

I don't have lupus, but I do know a good deal about autoimmune diseases and rheumatic diseases in particular. In general, they suck. Was there something you wanted to know?

[tlgpa]

Yes. Not something you want to have.

[Dredly]

Yes. Not something you want to have.

its normally not something you can opt out of....

[bgeddes]

My wife has Lupus, going on 8 years now, not fun, ever. What can we help you with?

[adymond]

I got some abnormal blood tests back and the doctor is sending me to a rheumatologist. One of the things mentioned was lupus or some other rheumatic autoimmune diseases. I don't exactly fit the typical profile for any of them since I'm a white male, but lupus seems to fit more with my symptoms than polymyositis which is the other one mentioned.

I'm just trying to find out what to talk to the rheumatologist about (things I should ask and things I should be sure they consider), what's life like (how is it managed etc.), and that sort of thing.

[bige64]

I got some abnormal blood tests back and the doctor is sending me to a rheumatologist. One of the things mentioned was lupus or some other rheumatic autoimmune diseases. I don't exactly fit the typical profile for any of them since I'm a white male, but lupus seems to fit more with my symptoms than polymyositis which is the other one mentioned.

I'm just trying to find out what to talk to the rheumatologist about (things I should ask and things I should be sure they consider), what's life like (how is it managed etc.), and that sort of thing.

I was diagnosed with a bunch of fun stuff about 6 years ago. Polymyositis, Rheumatoid Arthritis, Rheynauds Phoenomenon, and a mild case of lupus.

I was first treated with max doses of steroids and methotreaxate until it was discovered that my liver was having trouble from the crap they were giving me. On and off several other medications for small terms to test out what worked.

I am currently on weekly self administered Enbrel Shots and prescription Vitamin D for the liver. So if you are diagnosed with rheumatoid arthritis I couldnt say enough good things about the Enbrel. The rest of my problems there really isn't a whole lot that can be done with them.

[Sandcut]

I've got SOMETHING but, no one seems to be able to pin it down. Been to 12 different doctors over 2 years (tomorrow finishes month # 25) to no avail. I'm seronegative across the board, which is good, I guess.

I hit concurrent equivocal (not positive but not negative) results for microscopic polyangiitis AND Wegeners granulomatosis about a year and a half ago until we ran the tests again to confirm. They were negative but, DAMN, that was a bad three weeks waiting.

My rheumatologist settled on a diagnosis of "undifferentiated spondyloarthropathy." If you look in a Latin/English dictionary that translates to "I have no idea."

The one thing you may want to have your doc look in to down in your neck of the woods (Western Delco, Eastern ChesterCo) is Lyme's disease. Pretty high incidence down there. Lyme does some screwy things and often goes unnoticed/undiagnosed. There's another recent thread on the subject I posted about the testing if you're interested. A coworker of mine down in SE PA/NJ contracted babesiosis from a tick and spent a week in ICU before they figured it out.

If you're looking for someone to rap with about it or bounce some ideas off of feel free to PM me. I'm a biologist by trade and used to have my EMT cert and my wife is an ER nurse. I'm sure she'll be familiar with your situation if I'm not. Being a bio-dork and having my own problems, I'd be curious about what's so abnormal about your serology.

Good luck with it otherwise.

[slicknick131]

I was first treated with max doses of steroids and methotreaxate until it was discovered that my liver was having trouble from the crap they were giving me. On and off several other medications for small terms to test out what worked.

I'm curious, how long were you on methotrexate before you begin having irregular liver blood work?

I was diagnosed in late January (two days before my 25th birthday) with rheumatoid arthritis and was given steroid shots and started out with 10 mtx pills a week. I'm down to 5 now, thankfully. I also take 400 mcg folic acid and 3000 mg omega-3 fish oil everyday. The fish oil took about three months to kick in, but it's really helped the pain and absolutely helped the morning stiffness. I also have to take Restasis and Optive daily for dryness from Sjogrin's Syndrome. Rheumatic diseases are SO high maintenance. I was packing for a trip last night and it took me ten minutes just to get my pills together!

It is speculated that autoimmune diseases are so rampant in the Western PA area because we have so little sunlight here, resulting in Vitamin D deficiency, which can result in both chronic back pain and trigger autoimmune responses. Also, I learned too late that smoking and not using birth control seem to result in more cases of RA.

From my own personal experience, THE best thing that can be done to lessen the symptoms of rheumatic disease is to restrict your diet. Many if not most people are allergic to either milk or gluten without every realizing it. With prolonged exposure, these allergies trigger autoimmune responses and result in chronic disease. Watch your meat intake, particularly red meat, and eat fish, particularly salmon. I feel GREAT the days after I eat salmon! Watch out for nightshade vegetables too. I eat mainly a Mediterranean diet, heavy in soy, beans, veggies, fruit, and oil. Pineapple juice has outstanding anti-inflammatory properties.

[Michele]

Anyone know someone living with lupus or actually have lupus?

Yes. My friend has lupus. Diagnosed over 10 yrs ago.