Lupus

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What’s left to eat ?

What’s left to eat ?

So I’ve been keeping a diet for SLE, chrohns disease, lactose intolerance and celiacs disease but recently I’ve been reading a lot about histamine intolerance and I think that may be contributing to some continued symptoms. Histamine intolerance can be caused by many lupus medications including nsaids, prednisone, plaquenil, diuretics, gastric reflex meds etc. too much histamine in the body can cause brain fog, skin issues, severe menstrual cramps , anxiety, increased heart rate, insomnia,… read more

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A MyLupusTeam Member said:

Dermographia is what you describe. 7% of healthy people react this way as well. It can be an indicator of possible mast cell issues but is not… read more

posted about 5 hours ago
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Hair restoration

Hair restoration

I discovered and confirmed my lupus diagnosis after having a huge rash on my scalp. Felt like a 2nd degree burn. Couldn't comb hair and head was on fire. At first diagnosed with discoid, after meeting my rheumy and blood work I was confirmed SLE. Scalp cleared after losing lots of hair, and the rest being in poor condition. You know the drill. With good supplements and hair growth products (not rogaine) my hair returned to it's former fullness and shine over a few months. Fast forward 5 years… read more

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A MyLupusTeam Member said:

I was diagnosed with lupus, due to alopecia, blistering, terrible inflammation of the scalp. After I found out it was lupus I only used what the dr gave… read more

posted about 6 hours ago
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Hi all, i have recently been experiencing vaginal dryness especially during sex. Could it be because of some of the treatment i'm taking?

Hi all, i have recently been experiencing vaginal dryness especially during sex. Could it be because of some of the treatment i'm taking?

I am currently taking Chloroquine, Azathropine, Heloperidol, Vitamin D, Asprin and another pack that i take at night only (forgot the name). I have been taking these for about 4years now and I have never experienced vaginal dryness before until now. I do not know if its any of these medication that's causing it or its the contraceptive i'm using (Nistrate), but i have been using… read more

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A MyLupusTeam Member said:

If you've been diagnosed with Sjogren's disease that can be a symptom. It also causes dry mouth and eyes. You should mention it to your rheumatologist.… read more

posted about 13 hours ago
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I've been having issues for years with fatigue and pain mainly in my neck and hands and various infections. Now I have a red rash on my

I've been having issues for years with fatigue and pain mainly in my neck and hands and various infections. Now I have a red rash on my

face. This blood workup (this is third one all with negative results) and it was positive for ANA and ANTI-DNA DS. Being referred to rheumotologist for another workup. Everything I have read has pointed to Lupus. My doctor just called and she just said it warranted more testing. Just wondering what other tests are there?

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A MyLupusTeam Member said:

Thank you very much! I see a few I haven't had done. It's frustrating being in limbo and waiting for a possible diagnosis.

posted about 14 hours ago
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Sle only ? MCTD? Scleroderma And SLE?

Sle only ? MCTD? Scleroderma And SLE?

I’m driving myself nuts the rheumatologist says I have SLE only but I can’t help but wonder if something’s missing ?? Do I have schleroderma? It’s scary because most people as they age use collagen and retinal and vit c to look younger and feel younger but with schleroderma you produce too much collagen so this may be dangerous and nobody talks about this stuff . I do have reynauds disease which is charastic of sle and schleroderma. I have the charastic schleroderma indentation… read more

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A MyLupusTeam Member said:

I hope you managed to get some answers for this!

posted about 15 hours ago
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dsDNA levels?

dsDNA levels?

I'm newly diagnosed in November, and my dsDNA levels keep climbing every time they test them, currently at 23, was at 16 on first test. Is this really high? What are other's levels? I read somewhere that increase of dsDNA of more than 25% can be indication of a flare, even before c3/c4 show, and greater risk of kidney issues, but i have no sense of how high my levels are compared to others with Lupus. Thanks.

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A MyLupusTeam Member said:

Depends on the scale used and the way the lab tests for it , all scales are different , some scales have to be over 330 to be considered positive , I… read more

edited, originally posted about 22 hours ago
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Does anybody still do sports after diagnosis?

Does anybody still do sports after diagnosis?

I know for us just doing just normal daily things is exhausting I'm like that too I'm now in remission and have more good days than bad days and have a pretty good grasp on knowing how hard I can push myself before I bring the wrath of the beast on me.Before I got sick I had no interest in skateboarding but now after diagnosis it has(just to cruise on my longboard and enjoy the wind in my hair no Tony Hawk tricks)I'm actually pretty good at it I go outside(in 30… read more

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A MyLupusTeam Member said:

You keep T it. Don't give up what you love. Yes lupus is crap but so can life be. I loved baseball still do and attend all the woman's basketball I can.… read more

posted 3 days ago
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Scalp burning

Scalp burning

Does anyone else have scalp issues? My scslp has always burned in random patches after I wash my hair but this time the burning hasn't gone away and sores (some rash looking) form in the spots that burn.

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A MyLupusTeam Member said:

Wow, i have the same problem this is the first time it has happened and i didn't know what it was its . only one one side of my head i even got… read more

posted 2 days ago
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Learning to say no and losing friends from the pre-lupus days

Learning to say no and losing friends from the pre-lupus days

My best friend from middle school, high school, college from Florida was in LA for a few days for a convention for Work with her husband. I never really talk to her anymore aside from the occasional “like” on Facebook and I haven’t seen her in over ten years . She messaged me a few months ago saying she would be in town and would love to meet up , I told her well I can’t plan ahead but we will see when Your here (knowing Subconsciously I wasn’t gonna… read more

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A MyLupusTeam Member said:

You are very welcome <3

posted 2 days ago
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Does anyone here use CBD for their ailments?

Does anyone here use CBD for their ailments?

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A MyLupusTeam Member said:

@A MyLupusTeam Member I had that experience with some strains as well. I just received my order from a dispensary and I noticed a HUGE difference… read more

posted 2 days ago
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