[Postie]

What does that really mean? My thought is that it means that you have lupus that does not go into remission? Is that what it means by active lupus?

CindyLou

 

[alimonkey]

I thought it meant that the disease was active in some way e.g. you have some presenting symptoms such as joint pain. If the disease isn't active then you are in remission. But that's just my simple view.

 

[Postie]

I always have low neutrophils and low white count. So is this considered active lupus?

CindyLou

 

[Maia]

Probably, but the only people that usually describe lupus as active or not active are doctors. Or those of us that read our doctor's notes. Those of us who have lupus will normally view our disease as active when we have symptoms/pain/fatigue or organ problems that need treatment. Low WBC's falls into that category in my book, especially if it's very low and requires some sort of treatment.

I have to ask you why you ask this question?

 

[Postie]

I asked the question because it says that leukopenia and neutropenia are very common in active lupus. So I wondered if that's what it meant.

 

[MDaisy]

I asked the question because it says that leukopenia and neutropenia are very common in active lupus. So I wondered if that's what it meant.

I have never been DXed with Lupus but when I had a suspicious flare about three years ago I had leukopenia, neutropenia, anemia, thrombocytopenia. I also had purple blotches across both forearms and a necklace of purplish dots around my neck. I also had GERD.

Last summer I had a very red butterfly rash across my nose and cheeks. I had GERD. The doc said it was my rosacea flaring up.

I still have GERD and when I went outside to hang up clothes last week my skin started to burn (not sunburn) and itch. I am still itching. I am seeing a dermatologist next week. I also have red, itchy rash on the back of my neck after my trip outside.

I still don't have a DX but I am still very suspicious of the Lupus DX. But I am not a doctor so what do I know.

I forgot to add before all these other things started to happen, at age 45, my hair started falling out. I mentioned it to my doctor and he said it was caused by menopause. I believed him but it does make me wonder. I was going through the pangs of menopause and eventually had a hysterectomy because of dysfunctional uterine bleeding (DUB). After that all the other things began to happen including a massive break out of atopic dermatitis.

Enuff for now

 

[Postie]

Thanks for writing all your symptoms. You sure had alot.

I have 4 criteria of lupus and the rheumy diagnosed me with that. He just diagnosed me so I'm very new at this. I always have questions and always looking for answers.

Did a doctor ever say why you had the leukopenia and neutropenia?

Does your rosacea have any bumps or is it just clear? Does the rosacea rash come and go?


CindyLou

 

[MDaisy]

Sorry for the delay in responding. We were having thunderstorms last night and I had to go offline.

Yes, all the stuff mention has been medically documented. At one time my WBC was around 800 to a 1,000, can't remember the exact numbers, and it took me almost two years to get to 3,000. I may have my blood drawn this week as I've had burning urination but no bladder infection. When that happens it usually means I didn't drink enough water or my WBC is low. I've been trying to drink more water and am feeling a bit better today.

I still don't have a DX of Lupus, although I wonder why, but I am not a doctor. I am going to see the dermatologist next week about my atopic dermatitis aka eczema. I will ask her about that.

As to the skin: Mainly very red coloration across the nose and cheeks. One cheek had more of a lopsided reddishness than the other. I do have rosacea so that could have been it but then it could be combined. Again, I am going to see the dermatologist, rather than my GP, to see what the specialist says.

This year I am feeling really good. Not tired. No muscle or joint aches. No red skin.

I've been staying out of the sun and putting on 45+ sunblock when I do go out in the sun though.

thanks for asking!