Botched Lip Biopsy but Positive Response to Plaquenil

[harlin]

My Rheumy said I didn't need a lip biopsy. she was sure I had it as blood tests came back positive. She said she didn't want to put me thru that too. Thank goodness
hugs harlin

[Woolygimp]

Self medicating with Plaquenil, sight is over rated.  Plaquenil working in 2 or 3 days is called placebo effect.

You can say that, but my worst symptom of Sjogren's is the dry facial skin.  You may have read a previous post of mine, but basically the skin on my face is usually so dry that it hurts to smile and I constantly have to apply cream just to keep it from turning incredibly red, peeling, and feeling like I dunked my face in glue because the skin is literally that tight.

Three days after taking the Plaquenil, I didn't have to apply any lotion at all to my skin and it felt pliable and completely normal again.  It's the first time in years that it's ever felt like that... and unless something else of incredible coincidence happened in the last few days to relieve symptoms that have plagued me for over half a decade... then I don't know.

This is not a case of me just "feeling better".

[irish]

woolygimp, It sounds good that you have had some improvement. However, the fact that your skin is so dry and tight does not mean that you have sjogrens. The fact that you have had other autoimmune diseases diagnosed is good to know, but there are several other autoimmune diseases that can cause dryness and tight skin.

I an a registered nurse and I have to tell you that if you go for another lip biopsy it might be in vain. Lets say that the medication is, in fact, making you better as you say. It might influence the lip biopsy results. This will most certainly cause you many issues in the diagnosis and care of whatever is going on. Any doctor you go to needs to be aware of the fact that you are taking this plaquenil and because you are self medicating with a potentially dangerous drug you could lose your doctors.

Doctors do not want to be involved with people who are self medicating as they feel that there is no way they really know what the patient is doing that could screw up all the blood tests. Plus, all that can happen with drug side effects, etc, makes a doctor scared to death of being sued.

I can most certainly understand your need for relief but I am curious as to why you did not ask the doctor to start you on medication. If you have these other autoimmune diseases I would think that you could be treated for this disease symptomatically if no other blood work or tests are positive. Just because you have a lilp biopsy done does not guarantee a diagnosis. What will you do if the second biopsy comes back negative. What autoimmune issue will you think that you are treating with the plaquenil.

Remember that eyes are very important plus the liver is always handy to have around also. Then we also get into the efficacy of a drug bought over the internet. Is it really the drug you think it is or is it something else. They could even throw in some high dose prednisone or other drug. Really scary as far as I am concerned. Also, if you do happen to screw up your body by self medicating with a potentially dangerous drug what doctor would be so inclined to treat you then??? Just some things to think about.Irish

[inga]

Perhaps a biopsy of your facial skin would yield more information than any more lip biopsies.  SjS is not all that associated with super tight, red, dry, cracked skin.  Most people with SjS have dry eyes and dry mouth and often + blood work, at least the ANA, and sometimes the SSA and SSB.  Depending on your doctors and other symptoms, a lip biopsy may or may not carry much weight.  ALL meds have side effects and they all have risk.

Scleroderma is more associated with tight problematic skin, but, that is also associated with +ANA, sometimes, but not always, Scl-70 antibodies.  There are many forms of Scleroderma.  Usually dry painful skin is not the only issue.

Usually with the autoimmune issues, there is some pattern that gives the doctor a clue as to which one it is....and that clue is symptoms and blood work.

I agree with Irish, that the lip biopsy is not a for sure thing.  I am an RN as well.  I can't recommend self medicating.

Your diagnosis could be something totally different....it is important to get the diagnosis correct...not necessarily rapidly.

Since you are in so much discomfort, I would see a dermatologist....if your skin is your biggest issue right now and a derm could potentially assit you to get an accurate diagnosis, whatever it may be.

[Rostradamus]

Again, actual referances. PubMed  Diagnosis of the Mikuliez-Sjogren syndrome using biopsy of the minor salivary glands - index for medlineplus.com in my research. You all might be suprised on how hit or miss it really is, as well as accuracy. And from other studies I know if the technichian isn't really familiar with what to look for and what it looks like. You might as well consult the local free clinic.  Also I'm always seeing so many poeple jump on poeples back that find something helpful for them if not prescibed by THEIR doctor. FIRST. who says their doctor is in the know?  Why do you think the adverage diagnosis time for Sjogren's is OVER 6 YEARS?!   It is a very specialized study with dificult changing symptoms that many, even specailists, write off.  Yes advise checking out things thoughouly and check ups. But HA!! there is NO WAY that I could get follow up testing weekly and my case had a rapid onset and is severe. Insurance companies don't like weekly follow ups and won't pay. THE TRUTH. Been there still doing that! I can't even get a follow up MRI on back lessions so bad they sent me home with a walker and said lift nothing more than 20 lbs. And that was 18 months ago! So it's a reality check when it comes to what medicine, treatment or herb works for who.  I learned just from my COPD med sensitivity: a person will put up with much when you fight for every breath. And if someone said a tablespoon of bird droppings will stop a bad asthma attack and you are prescibebed nothing, do to lack of diagnosis or doctors knowledge. Bets are you'll try it. And if it works and you get another attack you'll be asking for bird droppings.  We don't live in a perfect world. Desperate illness can lead to drastic actions just to survive.  Did anyone look up this med befor throwing stones; to give accurate warnings concerning this particular drug?   and again www.WrongDiagnosis.com  and Sjogren's Syndrome Foundation,ink.  to get a list of symptoms and diagnostic facts.

[Woolygimp]

Thanks for the post above, and that's exactly how I feel.  People take risks in everyday life, and this particular risk has the benefit of possibly making my life tolerable again.

As far as whether or not I have sjogren's.  I have dry mouth and dry eyes, and they get especially bad during a flare.  Sjogren's has been known to affect the skin in over 50% of cases causing extremely dry skin and inflammation, which I also have.  It's not scaley like Scleroderma, just completely dehydrated.  I was also suffering from Polyuria and excess salt disposal, and kidney dysfunction is also common in Sjogren's.  During flares, my joints and muscles hurt and it feels almost arthritic like although this isn't a symptom I suffer very often.  Then there's hoarse voice that comes and goes a lot, and this is also a common symptom of Sjogrens.  It's hard for people to understand me when I talk and my voice is hoarse, it feels like my vocal cords are completely dehydrated.

Then I've been diagnosed with celiac, and celiac and sjogrens are common in relation to one another.

I don't see how this could be anything else.

[eyeamdry]

Knowing the risks of the lip biopsy and numbness is one of the benefits of this board.  Going in for a "harmless" lip biopsy and one that will (not necessarily) diagnose you if you have SS is one thing, and knowing if there is a chance of numbness is another.  Many people have had Lasik and were never informed of all the problems.  Knowing ahead might have made a difference in our decision.  Lucy

[Woolygimp]

How else do I get a proper diagnosis?

[inga]

I think most people with autoimmune disease diagnoses, have on one or more occassions had NO diagnosis, or several different diagnoses.  It is never as clear cut as one is initially led to believe.

[Woolygimp]

I think most people with autoimmune disease diagnoses, have on one or more occassions had NO diagnosis, or several different diagnoses.  It is never as clear cut as one is initially led to believe.

I can't get properly treated without a proper diagnosis.

I am almost certain that I have Sjogren's, based on symptoms and what not.  Autoimmune problems run in the family, but my blood work has come back negative (ANA) which is very unreliable.
The lip biopsy was inconclusive, I was thinking about having another one done... but I don't know if I want to risk it.

[inga]

I take it your blood is negative.  As the poster prior stated, 30% give or take a few %'s, are negative, you could be in that group.  If so,  then a lip biopsy could be diagnostic, sort of.  For 6 years I had neg. blood work and + lip biopsy, and I was NOT treated....often times a doctor won't treat.  Later I seroconverted to a + ANA, and they are now debating what exactly it is that I have.  (I have PN too).   They are calling it primary SjS, with a twist, but I have a very high ANA, and low C4 and other goofy things.  My C4 has been low since the + lip biopsy.  That was the first blood abnormality.  Lip biopsies can be + in several other conditions.

So, a + lip biopsy won't necessarily get you treatment...depends on the doc.  If it is negative, then you can rest assured that it is not SjS.  Maybe it is worth getting to set your mind at ease.

[eyeamdry]

We've tried.  Folks, let's just leave well enough alone.  By reading this board, many times people are forewarned about something that they may want to think about.  I had the lip biopsy before I knew anything about having numb lips after.  Also, the ordering dr said it was negative and I took the lab result to other drs who said it was positive.  Whatever it was, I'm left with a numb lip after 3 years.  Along with that, my bloodwork was positive and I didn't even need the dang lip slashing. 

You'll be fine and I hope it works and helps with a diagnosis or eliminates the possibility.  Lucy

[inga]

I am still chewing on my numb lip....10 years later....Alas.  Even with all my blood work and biopsies....it still is NOT clear, exactly which autoimmune disorder I have.  Given I get IVIG, what more can they do anyway?  Treatment is not a panacea.  One may still feel pretty lousy.  I gotta go warm my knuckles....owie.

[malew/sjogrens]

WoolyGimp, You get a proper dx by seeing a qualified DR. (Rheumatologist) and a qualified ENT.

I went to my eye Dr, and had a Rose Bengal Test done which was positive. My Rheumatologoist did 13 different blood tests and my ANA came back positive. I then had a lip biopsy which was positive.

Why self diagnose? We are not qualified medical professionals. I would never take a medicine without a prescription and knowing of the potential side effects. Your eyes are important.

[Prairie Gal]

I guess I'm one of the fortunate ones:  I've had two lip biopsies and the first one left me just a teeny bit of numbness in one spot for 3-4 years and the second one didn't leave any. 

The first biopsy was to confirm the Dx of SjS, though my rheumy tentatively diagnosed it after my first visit, based on my symptoms.  Blood tests all came back normal, but he said he was taught to treat the patient, not the lab results. 

The second biopsy was 2 years ago at UCSF; I participated in the international study they're doing to try to come up with  a better way to Dx SjS.   Dr. Ava Wu, a member of their clinical dental staff, did it and she made such a tiny incision I couldn't find it when I checked my mouth about 10 days later.  She was also very fast because she's done so many of them.

Lip biopsies don't always help in diagnosing SjS and my rheumy said he'd treat me without it, but he'd prefer I had it to confirm his Dx.   I decided I wanted it done before agreeing to start on Plaquenil.

Our experiences are all slightly different, but researching possible consequences when considering a lip biopsy is a smart thing to do.  At my preliminary appt. with the HNT surgeon who did my first one, he explained the area is rich in nerves and there was a chance there could be some nervedamage.  I was lucky it was very small and wasn't permanent.  He was very pleased with the result and so was I.

Prairie gal