Sister with SLE????

[Kellyleg]

I have thought for a few years that my sister has SLE, the same as me, she has very similar symptoms and has had for a while but because her bloods are ok they wont take it further, however now she is suffering with Raynauds too they are send her to see a rhemy.... Does anyone else have SLE in the family?

[Hidden]

Hi kellyleg, my cousin, ( on my mums side of the family,) was told 30 years ago that she had 'dormant lupus'. I don't know why this was picked up, as she wasn't ill, lupus wise, at the time. 30 years on, and she is very symptomatic and has been told she has fibro. A diagnosis that is clearly wrong for her. I suspect that my daughter also has worrying symptoms too.

[Natura]

Kellyleg...I too believe two of my sisters have lupus, but since it is low end, they don't bother to get tested or do something about it. One is a pediatrician too. She just believes she is getting old. Jaw, shoulder, hip, knee problems. She is 64. My other sister has many symptoms but blames the hip pain on a car accident she had years ago. She is done with menopause and still gets hot flashes. I believe she also has muscle weakness since she can't get up off the floor sometimes. I am not sure she has any other symptoms, but she can't lose weight and is carrying water, has a crushed kidney (how her doctor described it). I worry about her a lot since two of my brothers have clotting disorder. One brother has Intrinsic Circulating Anticoag Lupus anticoagulant. The other brother just got tested for a genetic blood clotting disorder. He never got tested just for Lupus. I tested positive for Lupus, but low end. Seeing a rheumatologist in May. I worry about my two daughters who are more than likely going to get it. Their pediatrician said they won't have to worry about for another 30 years. I thought that was an interesting comment. In the meantime, I am trying to get everyone on a healthier diet. I am experimenting with gluten free stuff. One of my other sisters has Hypothyroidism and on medicine for that.

[Kellyleg]

Its funny you should say that because I am again convinced that her daughter has it.... I have no children... I am going to see the rhemy with her I think and try and get some answers for her...

[Kellyleg]

Hi Natura what is Hypothyroidism? I had terrible hyperhidrosis when I was younger and has 2 ops to sort out... Interesting that you say about the weight, I didn't realise this was a problem, I thought it was just me, but I really struggle to loose weight! I have also tried gluten free but doesn't make too much of a difference for me, but I have cut down on my wheat intake. My sisters symptoms are pretty much the same as mine, I am also low end, although just before xmas I had a "Lupus induced Stroke" very scary.. also suffer with mouth ulcers, head ulcers, rash on face (although not terrible, my sisters is much worse and classic butterfly) I get little spots on my nose though... (lovely!) bad hips, raynauds, constantly weeing, B12 deficiency, Folic Acid deficiency, for the first time on my last rheumy visit, they are doing more in depth tests on my immune bloods, although I cant remember what they are called. I still work full time but I struggle when I have a cold (as I do at the moment) but try and get on with it as much as possible.... I also am very sensitive to the sun / uv... although I wont give up my holidays, I wear a big sun hat and lie in the shade all day with my factor F off... I am 36 and was diagnosed 3 years ago after about a 5 year period of knowing something was wrong and no one believing me!

[Natura in reply to Kellyleg]

Kellyleg...hypothryoidism is an under active thyroid. Interestingly, the symptoms are a lot like lupus...hair falling out, muscle weakness, brain fog, brittle nails .I also have multiple nodules on my thyroid. Not getting a biopsy. Not interested. (I do not have great health ins right now). It seems every woman I know has nodules. My two neighbors, my girl friend around the corner...what is the connection????Gluten free doesn't seem to be doing that much for me either. I don't notice that much difference. I am trying this anti inflammatory diet from the book on Amazon. I make some of the side dishes, but don't live on only. The digestive enzyme I am taking breaks down gluten. Our bodies produce less enzymes as we get older, our genetics ( genetically lupus) and our lifestyle all contribute to enzyme production. I am hoping this will help to resolve these nodules. I went to an acupuncturist that also gave me this nasty tea and I felt less pressure on my neck, like the nodules reduced in size. I know I shouldn't be playing doctor on myself, but after 20 years or so of doctors telling me nothing, I decided to do it myself. I actually was the one to ask my doctor to test me for lupus. I read my own blood work. I took some biology in college. It's not rocket science. Right? Ha!

[esky]

Hi kelly

I dont have anyone in the family with lupus like me. But both my parents have other auto immune condition. I think personally that there is a strong genetic link.

Esky x

[teaparty]

I dont think anyone in my family has lupus but I dont see my fathers much at all. my sister has fibro though and my daughter has shown all the signs for lupus but her bloods only showed a small amounts not enough to say she has it. but they have diagnosed her with hypo mobility instead. I hope you get it sorted

[fishers63]

My brother has autoimmune conditions and although not ever diagnosed with lupus, to me it obviously is, I have SLE and my mum had autoimmune liver disease. Looking at photos of her that were taken in her last years I can clearly see the malar rash but strangely never noticed at the time.

[krisdy]

I myself have SLE and I think my sister does too. she has raynaud's and she also has alot of symptoms but she said she does not. but She does not want to know because she and I dont get along that well and she always made me feel like I was a freak