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Discussion Starter · #1 ·
:)Help! I need some answers..I had 2 skin biopsies and they showed no lupus..does that mean I DON'T have lupus?? My rheumo said I had it and was working me up for Mixed Connective Tissue Disease..I have had 2 positive ANA ,positive for Sjorgen's,positive ssb,rashes that are circular all over my face and arms that have left over 30 scars on my face alone,run a low grade temp EVERY DAY joint pain,my hair is falling out...fatigue like I have never felt before,trouble concentrating and severe muscle weakness...I am so tired of tests and more tests...I look awful and cannot go out in the sun because the lesions come....started on Prednisone 10mg and Plaquanil...Anyone who can offer advice..please respond...I need someone who has been here...
 

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Hello dreamgirl,

No, it doesn't mean that you don't have lupus. Your rheumy has told you you do and your bloods also indicate that. I am presuming that the rheumy reached that conclusion based on those bloods and on clinical symptoms.

Skin biopsies can sometimes help when people have negative bloods but they can actually come up negative in a surprisingly high percentage of people who actually have lupus.

Katharine
 

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Hi:
as Katharine said, skin biopsies can be misrepresentative. In alot of cases it depends on what test the dermy ordered, and some luck for all the planets to align.

A friend who has discoid, has several (5 I think) skin biopsies that came up sun-sensitivity before she had a positive for lupus.

The plaquenil can take several months to show results, patience is required. If things are unbearable, ask your rhumy for something to get you through the waiting period.

I am so sorry you are having sucha rough go right now (((HUGS))) for a better tomorrow.

Stephanie
 

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Discussion Starter · #4 ·
:(Thank you for all your advice..I am having a really hard time right now...I came home from doing 1 only 1 errand and fever 99.6..always starts in the afternoon and I cry because I am so weak...i might call Rheumo on Mon..this is ****....
 

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Take a deep breath and try to relax, it is only one way to dx lupus. You can still have it with the biopsy being negitive. My biopsy is positive and my blood work is negitive but I promise you I have lupus.

You are not weak, I am sure this is all be pulling you down and that it is more of the stress release than weakness. I do not know anyone that has lupus that is weak as a matter of fact I believe that these are some of the strongest people on earth. We don't look sick, we have roaming pains, stiff joints, feel sick most of the time, the sun is most of our enemy, sleep is a reward not something we need, and doctors that don't understand what it is like to look good and feel like crap! LOL. We still have lives, children, husbands/wives, grandkids, summer vacations, and we do it all in pain (most of the time not complaining aloud).

I do hope this helps some that you feel better soon.
 

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I don't think there is really a question here of whether you do have lupus or not. You have had positive ANA (I presume significantly high as the rheumy is taking that seriously) and the rheumy, based on bloods and clinical signs, says you do have lupus.

Is it because he mentioned Mixed Connective Tissue Disease (MCTD) that you are worried? MCTD is simply a mix of auto-immune diseases (lupus being one), the most usual ones are lupus/polymyositis/scleroderma. It is very much a recognised DX and just as serious as lupus. The treatment for it is the same.

If you are feeling so bad then you should indeed call the rheumy on Monday. Meanwhile, rest up, lots of TLC on the couch with a book, a blanket and a cup of hot chocolate (or something cold if it's hot where you are - it's only 14°C here, very cold for the middle of summer!!).

Katharine
 

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Hi Dreamgirl :wavey:

I am sorry for the hassle you are having, sometimes it just feels like it is never ending, it would make all our lives alot easier if lupus was diagnosed with 1 simple test...... wishful thinking :sigh:

When you had the skin biopsy did they take a part of the skin that had a lesion on it, when i had mine done i had quite a bad lesion on my nose at the time so the dermy took a diamond shape piece of skin, half of it was normal skin and the other half was the lesion.

My skin biopsy came back positive for lupus, that was my first skin biopsy so thank goodness it did come back positive as it as left a lovely scar on my nose and i didn't really fancy any scars.

I hope you get some answers soon :grhug::grouphug2::grhug:.

Take care :hug: Jo :hug:
 

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Discussion Starter · #8 ·
Thank you for your kindness..I really could use a Lupie friend right now..I am going to call my Rheumo tomorrow because I cannot go on like this..I get cut down like a tree whenever the fever hits in late afternoon/eve,I have new lesions,joint pain,hair is falling out,memory loss and concentration,muscle weakness..I could not lift the shampoo bottle to wash my own hair today...I cannot wait 2 more weeks until my next appt..I am on Pred 10mg and started on Plaquenil400mg on June 23rd..I need relief..I went to get my hair done on Fri am and had to rest the rest of the day...This flare has got to get controlled before it affects too much..It is as if I am allergic to the sun...go outside even with sunscreen and your prize is more lesions and scars...I have really had it,feel so sickly..thanks for letting me vent...Di
 

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Sorry that you are feeling so rough, I hope that your rheumy helps you. Let us know how you get on.

Deb
 
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