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Old 01-14-2010, 01:59 PM   #1
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pw1958 HB User
Unhappy Need help with biopsy decision!

I have been tested for Lupus through regular labs & was so far found negative,but I do have pretty much ALL the symptoms that lead my Rheumie & Dermie to do a biopsy. My dilemma for this is that I am starting a new job next week, and will take a few months to build up sick time. The next time that I get this horrible painful, itchy rash they want it to be a full blown rash to do the biopsy. I couldn't get it done this time,since I NEED this awesome new job,and they put me on prednisone which takes a long time to help, and they said the prednisone would alter the biopsy tests. How full blown of a rash do I have to get for the Dermie to get a good enough sample??? The dermie is positive that this is an Autoimmune thing, and I have been suffering so bad. It seemed to have started out as a yeast infection,to my usual long tortuous rash. Please help me if you can! Thanks!

 
Old 01-16-2010, 08:31 AM   #2
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Re: Need help with biopsy decision!

pw, hi & welcome. Too bad they didn't do biopsy BEFORE prescribing you Prednisone! I'm only a patient, so I don't know how big a rash needs to be, for a useful biopsy (sorry). I was told that rashes should be biopsied when NEW, so maybe that was part of their reasoning, too...?

I've read that *non-lesional* skin can be biopsied; but downside is that the chances of proving lupus (if the patient really has it, that is) aren't as good. Maybe you could ask your drs. for their thoughts.

An aside: I hope whomever does your biopsy at least considers doing immunofluorescent stain tests. My final dermie (#7!) did; and he told me the stain tests "lit up" in unique lines, which is a result considered pretty much UNIQUE to lupus, he said. So those additional stain tests were really useful!

Hope you post more when you can & that others chip in soon. Sending best wishes, Vee

 
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Old 01-16-2010, 05:52 PM   #3
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Re: Need help with biopsy decision!

I've had many biopsies of rashes....the most recent was 3 weeks ago. It turned out to be excema. The others all came back as lupus. My dermie says she looks for a "juicy" spot to take the sample. I don't know how fresh the rash needs to be. This last one was at least a month old. Prednisone should help pretty quickly if the dose is high enough.

 
Old 01-17-2010, 03:37 PM   #4
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Re: Need help with biopsy decision!

Quote:
Originally Posted by pw1958 View Post
I have been tested for Lupus through regular labs & was so far found negative,but I do have pretty much ALL the symptoms that lead my Rheumie & Dermie to do a biopsy. My dilemma for this is that I am starting a new job next week, and will take a few months to build up sick time. The next time that I get this horrible painful, itchy rash they want it to be a full blown rash to do the biopsy. I couldn't get it done this time,since I NEED this awesome new job,and they put me on prednisone which takes a long time to help, and they said the prednisone would alter the biopsy tests. How full blown of a rash do I have to get for the Dermie to get a good enough sample??? The dermie is positive that this is an Autoimmune thing, and I have been suffering so bad. It seemed to have started out as a yeast infection,to my usual long tortuous rash. Please help me if you can! Thanks!

 
Old 01-17-2010, 03:52 PM   #5
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Re: Need help with biopsy decision!

Hi pw1958, I just read your post, I was surprized to hear that your dr wants to do a biopsy on you. Did you say that all your test come back negitive, even the ANA? I had the same systoms as you when I broke out it was a wide spread rash on my lower body and really bad on my buttocks and feet. And yes it hurt and itched very much. My dr tested me including ANA that came back positive, but I felt so bad he put me on perdnisone righ away and said he was sure it was lupus. I did go to the specialist but I had to wait two wks to see him. By than the rash was almost gone but it left a faint shadow behind every place the rash was. Do you know what your ANA numbers were? Is it the skin dr that wants the biopsy I wonder how that will show lupus I just never heard of that is there anyone else out there that has had a biopsy for lupus. Do you still have the itchy rash I really feel bad for you if you do.

 
Old 01-17-2010, 06:24 PM   #6
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Re: Need help with biopsy decision!

My dermatologist has been my best diagnostician. She found my lupus, shingles (twice) and lymphoma. She then refers me to the proper specialist. She says the skin is a good indication of what is going on inside. My ANA is sometimes negative. ANA isn't the only test to dx lupus.

 
Old 01-17-2010, 06:53 PM   #7
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Re: Need help with biopsy decision!

jfrlll & pw1958, I had one last skin biopsy, after several others, that confirmed lupus, when added to my lifelong symptoms & lab results.

My 7th dermie, working with my 2nd rheumie, doing my 3rd deep-punch skin biopsy, did the definitive skin tests. Here's what I was told about skin biopsies. A deep-punch biopsy enables a lab tech to look at cells under the microscope, BUT that alone may not tell enough! A SECOND round of tests can be very useful where lupus is suspected: immunofluorescent stain tests, called a "lupus band test". The stain tests can light up in lines that are *characteristic* of lupus. In lupus, immune junk may build up between dermal/epidermal skin layers, and it's these (aberrant) deposits that immunofluorescent stain tests can detect.

I turned out to be in an very small subset of lupus: ANA-negative but positive for anti-Ro = Ro-lupus. My skin findings really helped sealed the Dx, because my other problems, which I'd had from age 12 onward, didn't define any single condition, so I was stuck in no-man's land for DECADES. (I'd had chronic fatigue, weight loss, hair loss, migraines, chronic urinary/GI issues, bizarre menstrual periods, severe joint/shin pain, leukopenia, anemia, sciatica, etc.)

So my point (just as a patient) is that skin tests can definitely add a whole lot to the mix! If you have rashes & other issues but are getting nowhere, look for a savvy dermatologist or dermatopathologist. Best wishes, Vee

 
Old 01-18-2010, 08:24 AM   #8
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Smile Re: Need help with biopsy decision!

Hi veej/pw1958 I just read your message that is true about having other test done. I only had gone to my family Dr. my ANA numbers had tripled and that was when the legions showed up. Than he sent me to the specialist (Rheumatologist) which did alot of blood test like you veej the Dr said with my past history even at the age of 13 I was showing signs. But back than I was a kid and never showed my mother my skin issues which was like shingles. I also had IBS even as a kid which got worse as I got older. In 1988 I was in the hospital for 2 wks they said they thought I had lupus but than said no after a specialist checked me. But I did and it was missed, that year I went to all kinds of specialist and had all kinds of test they even thought I had lymes. My ANA in 1988 showed positive but no one new what it was. I am just mentioning a few things that went on with my body from 1988 untill 2005 when I was advised I did have it. As most people with lupus I still have out breaks on my skin. When I do I go back on my prednisone for about a month as I have to gradually come off of it. PW1958 I hope with the biopsy it gives them the information they need, just so you don't have to continue to go through anymore. I will keep you in my prayers all of you, I hope one day they find away to better control or cure lupus. I do know that it seems like everyone I talk to either has it or knows someone that does. To me I think the reason for more people having it, is because they were misdiagnosed. Have Faith hang in there

 
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