[greenhaggis]

I do have SLE but am just wondering............

There seem to be many out there that can't get a diagnoses due to bloods not confirming even when they have other symptoms!

'can they have a skin biopsy taken?' - even if they don't have any rashes!

Will a skin biopsy always show Lupus if people do indeed have it!

Lesley

 

[cad]

Hi Lesley,
I am curious about about the biopsy thing Lesley aswell.
I have oral leukoplasia which i am due to have biopsied and i will be interested as to what it shows!!
I am also dreading it aswell as i've got to have a general anaesthetic!!
I'd be interested in what others have to say.

Cassie

 

[Katharine]

Hi,

I don't know the answer to this really. I was diagnosed through a skin biopsy and, at the time, didn't have a rash. In fact the biopsy was taken from an unexposed part of my skin (on the stomach).

My rheumy had sent me for a biopsy taken from the mouth, looking for sjorgens because she couldn't find anything in the bloods for lupus, but when the dermy saw the photo of the malar rash I had had a few weeks previously, she decided to test for lupus as well. Maybe the rheumy had also asked for that test I don't know, but it seemed like a kind of fluke stroke of enthusiasm on the dermy's part.

Anyway, for me, the biopsy was strongly positive whatever that means and since then I have been taken seriously by every doc I have met so it has been most useful

Katharine

 

[greenhaggis]

I only say this as if skin biopsies are conclusive in diagnosing Lupus ' why dont they perform them as a first line of helping to reach a diagnoses'!

Lesley

 

[Lily]

Hi lesley,

A good question, unfortunately a negative skin biopsy doesn't mean you don't have Lupus. It can prove you have it but sometimes the results are negative.
love
Lily

 

[sam101360]

Hi:

I too was DX via a skin biopsy - I had an active rash. They did 2 punches...one lesional and one in non exposed skin. I have SCLE which is skin lupus as well as SLE and APS + + +...LOL

My friend who has DLE had several skin biopsies before it caught the lupus, but hers is skin only no SLE...it came back as hyper-photo-sensitive many times before her final one that caught the DLE as it was active at the time.

I wonder...you would think someone would run a study for DX and take a variety of cases to see if that all test positive and if those without SLE ever test positive...

Curious question!

 

[Katharine]

I found these two "explanations" which still don't really give a clear cut answer but it seems that the diagnosis must always be a combination of things and that the biopsy can be part of the jigsaw. As to why they don't do it more often. I think that the answer to that (from another thing I read) is that the ANA tests have become more reliable with time and that cases of ANA negative lupus have become even rarer than before.

http://www.medicinenet.com/script/main/art.asp?articlekey=16915

http://www.uklupus.co.uk/sbiop.html

Katharine

 

[cad]

Hi Katherine,

That was really interesting, thanks.

Cassie

 

[cemc]

I had a dermy that was quite convinced I had lupus from the malar rash and general other symptoms. She sent me for a skin biopsy and decided to take it from a lesion on my arm, rather than scarring my face straight off. That biopsy confused things totally as not only did it fail to show lupus, it showed the possibility of amyloidosis. I have now gone down the track of having some further investigations for amyloidosis (but nothing showing there). Initially the plan was that if the arm didn't show lupus then I'd have a further biopsy on my face. The dermy retired and the next one I saw didn't see the malar rash as clearly and I've been discharged from skin clinic, so no face biopsy and I'm back to square one.

 

[pammyd]

I am trying the skin biopsy thing

I have been having a hard time getting diagnosed because my bloods come back clean as a whistle, even though I have many symptoms. My rheumy tests my bloods every 2 months because he belives I will eventually test positive. Meanwhile my treatment is very limited, and the things he has tried have not made me better yet.

I shared on a couple of forums here and got some responses of people who did skin biopsies for a diagnosis because they too were not testing positive through bloods. I immediately called a dermatoligist and made an appointment. I had asked my rheumy if I could do that on my face, but he said it would be difficult to find someone that biopsied my face. I won't quit until I do.

I figured they can do several places. My stomach is not affected but I will see if they try. My legs both have rashes from the ankles to under the knee. I have had a rash on my face since January.

It really gives me hope that this is going to be my solution to read these posts. I have been looking for one for so long. I will defenetley write about the results as soon as I get them. Whether I was able to do the biopsis or not.

Thanks to all that take the time to share in here. I appreciate the chance to try something different, anything.