Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: Woolygimp on February 14, 2010, 01:25:05 AM

Title: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Woolygimp on February 14, 2010, 01:25:05 AM
I went in to have a lip biopsy last week, and while it wasn't nearly as bad as I thought it would be, the doctor missed my salivary glands so the results were invalid.  So it looks like I'm going to have to do it again at some point.

However, being as confident as I am that my problems were Sjogren's, I started self medicating from an overseas pharmacy with 250mg of Chloroquine Phosphate (Aralen - a slightly more potent version of Plaquenil) and within the three or four days since I've been taking it I feel MUCH better, my skin on my face is oily again and soft, my eyes are tearing up, and my mouth is good. 

It's the largest improvement that I've felt in the past five years and it's only been four days, so it seems like I'm one of the ones that reacts positively to the medication; so I'm in good spirits. 

So I'm going in to get another biopsy done, but I'm not sure if it will be accurate if I'm taking the Plaquenil and if it's doing a good job of supressing my immune system.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: harrigan on February 14, 2010, 04:56:42 AM
Woah Woolygimp - take care with self medicating with something like this.  It probably takes upwards of 3 months to get beneficial effects but there can be side effects which may need checking up on.  That's why I had blood tests every week for the 1st 4 weeks on Plaquenil and most people have regular eye checks.  Are you getting any after care with what you are purchasing?

Don't mean to worry you but I think you could be putting yourself at risk here.  XX Ailsa
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: gurs on February 14, 2010, 06:35:58 AM
I had immediate results overnight with a few meds, like Plaquenil and Imuran. Doctors said there was "No way"....we know our bodies ,and everyone responds differently.
Good for you!!!!!
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: inga on February 14, 2010, 07:59:46 AM
You need a baseline eye exam.  You will read posts regarding issues with vision and plaquenil.  How did the surgeon miss labial salivary glands??!!  That is the point of the biopsy!  I would refuse to pay the bill.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: lynnmarie219 on February 14, 2010, 09:00:10 AM
Whoa is right!

If you haven't been diagnosed with sjogrens or anything else I would not be self medicating without a doctor supervising. This is just not safe to order your own meds from another country and start them with no oversight...please reconsider.

I am glad that you seem to feel better...but I just felt that I needed to say that this just doesn't seem to be a safe move in my mind. Please talk to your rheumy....
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Woolygimp on February 14, 2010, 11:26:03 AM
Well I've done my fair share of research on the meds, and I'm taking the "safe/standard" dose for this particular med.   I'm going to get another biopsy done and since it's done by an E&T doctor, and I might also go see an opthamologist to get a baseline eye exam done next week.

Personally, even if I suffer a slight hit to vision... I wouldn't want to go back to how it was, and I think many of you know that.  Sjogren's is one of those diseases that I wouldn't wish on anybody, especially when it effects the skin.

And I'm 99.9999% sure it's Sjogren's.  I've been diagnosed with celiac, another autoimmune disorder, and have been suffering from dry skin, dry eyes, dry mouth for a very long time... and have been checked for EVERYTHING like diabetes, diabetes insipidus, addison's, hypoaldosteronism, hypothyroidism, and the works.  My labs always come back fine, except for low testosterone, which is another trademark of Sjogrens.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: inga on February 14, 2010, 12:00:02 PM
Plaquenil can cause permanent blindness is susceptible individuals.  That is not a 'slight hit' to the vision.  But, if you know what you are doing.....

Call me traditional, but my first step would be a diagnosis.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Woolygimp on February 14, 2010, 03:30:24 PM
Thank you for the concerns.  I still plan on getting a diagnosis, prescription, and seeing an opthamologist when needed.  I'll probably go in monday to have another lip biopsy done.

Apparently the doctor had missed salivary glands and the tissue that he sent to the lab had none.  Is the lip biopsy 100%?  And do you think it's possible that the chloroquine can effect the results?

As far as taking the medication without an Rx, I had only planned to start it and do it for a very limited time ( I expected to have my biopsy results by now ) so it's very unlikely that I'll be taking it for more than two weeks or so, and I haven't read a single case of any eye related symptoms happening within that short of a time frame - usually takes months/years of continued use.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: louisa on February 14, 2010, 06:03:50 PM
Hi
Mine missed the glands as well, the comment she did make was that in sjogrens patients, the glands do not come up so easily because they have atrophied and died away so maybe that was what happened to you. My lip biopsy came up with "no foci seen but mild diffuse inflamation" That was good enough for my rheumatologist (saw her 4 weeks ago now) who did not want to put me through another facial biopsy.
I know why you have done what you did with the drug, i feel the same desperation but i echo Inga's concerns about the exam. Could you mange to get an opthalmic appointment and have a baseline test to check things out?
GLad you have found some relief though.
Lou x
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: RobinBat on February 14, 2010, 06:04:12 PM
FYI: I am the rare one, I had retinal changes with Plaquenil. I was having 6 month check ups and they found it as soon as it started and stopped the Plaq. I have had no more changes and just the usual dry eyes, we all have...
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Epson on February 14, 2010, 10:19:00 PM
Self medicating with Plaquenil, sight is over rated.  Plaquenil working in 2 or 3 days is called placebo effect.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: eyeamdry on February 14, 2010, 11:00:51 PM
I think lip biopsies are over-rated and I'd never have another unless it was KEY to treatment.  I have a numb lower lip from the one I had 3 years ago.
The dippy first rheum I had said it was negative.  Then my GP sent me to A University hospital and I took the very same biopsy to their lab and it was read POSITIVE.  Even without seeing the lab results after the U of M reading, 5 of my other docs disagreed with the first rheumy that it was negative.  They all said it was positive.

The first rheum did not do enough tests to show the antibioties in my blood.  Two weeks later at the U of Mich hospital, they did all the bloodwork and it showed I was positive.  So, there you go......same lip biopsy and a negative reading just because the doc didn't like to say anyone was positive.  Just two weeks later, the U of Mich said I was positive and started me on meds.  A few weeks after that, I found a wonderful rheumy closer to home from a person on this forum.  This rheum had no doubts I was positive......and I used the same paperwork and test results from U hospital. 

I don't necessarily think it's who DOES THE BIOPSY, BUT HOW WE REACT TO IT AND HOW THE LAB AND DR READ IT.  IT IS SUBJECTIVE TO A DOC'SD INTERPRETATION.  Sorry for the typos, need my acrylic nails chopped down.  Lucy
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: gurs on February 15, 2010, 04:49:49 AM
If a doc is going to base your diagnoses solely on the lip biopsy, would find another doctor. There are many autoimmune sufferers who are literally dying
and all their labs come back 'Normal"??? A really good doctor should be able to determine for the most part what might be going on ,after ruling out
alot of other things mentioned above, like diabetes, thyroid, menopause etc. The labs like Lucy mentioned are another story too...
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: inga on February 15, 2010, 08:16:28 AM
I was sick for a decade, then I had a + lip biopsy ....4 years later I was diagnosed with neuropathy, which was 2 years before my ANA went highly +...so 6 years prior to seroconverting to a 1:1,280 speckled and nucleolar ANA, I had a + lip biopsy, which was done at U of MN lab, and blown off by the rheum at the private clinic, HMO system in my city....

Then I went elsewhere and the neuro said...'Hm, looks highly + to me", some rheums felt it was highly +, some said it was not indicative of SjS.

 I don't know what I have to be honest with you, but, it is autoimmune, ANA remains highly +, C4 low, CRP goes up and down, platelets usually high, I have PN and almost every organ system has abnormality.  I am on IVIg. 

I was told by several rheums that plaquinel would not alter the course of my disease, and maybe, if I was lucky, I may 'feel' better.  I decided not to take it due to the eye thing....and it not being effective for me.  I did try it and itched like crazy, which is not unusual, given I have neuropathy and plaquinel is an itch inducer.

I don't know what to tell any one about the lip biopsy.  My lip is still numb....they took 5 samples all had a gland.  Then for years, it was and was NOT accepted as indicative of SjS.  I was told by several rheums "We don't know what you have".

  As scary as it is to have seroconverted, it helps to have doctors take me seriously, unless they are real jerks, and yes, there are some real jerks that want the ENA to be + too, and will blow you off if the ENA is not +.  They have identified maybe 20 out of hundreds of possible antibodies, and then they narrowed that to the ENA and look at it as if it is the bible of autoimmunity.  It's not.

This is a baby science.....it hasn't learned to use its legs yet.  Nothing is certain.  Plus, autoimmune disease can evolve....as mine did, over a decade.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Billydude on February 15, 2010, 08:59:23 AM
I'm going in for my second lip biopsy in a couple of weeks.   Its my two year follow up with a Sjogrens Study at UCSF.  The doctor that does the lip biopsy does a number of them every day and she knows what she is doing so I feel confident.   However I refused to have the eye smear test.   That was horrible and I hated it.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: harlin on February 15, 2010, 09:53:17 AM
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
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Woolygimp on February 15, 2010, 10:01:26 AM
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".
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: irish on February 15, 2010, 10:43:45 AM
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 ;D
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: inga on February 15, 2010, 01:07:35 PM
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.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Rostradamus on February 15, 2010, 03:31:23 PM
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.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Woolygimp on February 15, 2010, 03:37:08 PM
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.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: eyeamdry on February 15, 2010, 08:23:33 PM
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
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Woolygimp on February 17, 2010, 03:19:44 PM
How else do I get a proper diagnosis?
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: inga on February 17, 2010, 03:33:15 PM
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.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Woolygimp on February 17, 2010, 03:36:28 PM
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.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: inga on February 17, 2010, 04:57:24 PM
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.

Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: eyeamdry on February 17, 2010, 07:34:14 PM
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
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: inga on February 18, 2010, 08:46:43 AM
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.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: malew/sjogrens on February 18, 2010, 01:30:17 PM
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.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Prairie Gal on February 18, 2010, 03:49:33 PM
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
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: malew/sjogrens on February 18, 2010, 04:47:45 PM
Not sure where you guys get your information, but a positive lip biopsy means that you definitely have Sjogren's. My Rheumatologist and ENT both confirmed this. ENT advised that results are usually 95% accurate as I asked if there were any false positives. If biopsy shows scar tissue and lymphocytes it is a positive Sjogren's dx. My biopsy was also positive. WEB MD and the Sjogrens.org web site indicate that positive lip biopsy means Sjogren's.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: inga on February 18, 2010, 05:18:30 PM
A lip biopsy can be + in scleroderma, in amyloidosis, in sarcoidosis and many other conditions.  There is little 'definitive' in autoimmune disease.  Any insult to the labial salivary gland can produce inflammation, including the use of drying meds.  One has to meet a certain number of criteria for diagnosis.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Scottietottie on February 18, 2010, 05:45:03 PM
Hi  :)

I've never had a lip biopsy and have no intention of ever getting one. My bloodwork has never been positive for Sjogren's but has been mildly positive for lupus and is positive for Hashimoto's thyroidititis. My endocrinologist referred me to a rheumatologist because she ordered blood tests when I asked if Hashimoto's could make my teeth decay and make my eyes itchy.

My rheumatologist said that though my blood suggested lupus -allthe symptoms indicated Sjogren's. He dxd a Lupus/Sjogren's overlap and has dxd me on that basis. It can happen - without every blood test being definitive. In fact - having been on Plaquenil - my blood tests are now normal. i'm still on Plaquenil, still have dry eyes, joint pain and a dry mouth and my rheumy still goes with the same dx.

Take care - Scottie  :)
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: inga on February 18, 2010, 06:07:03 PM
Lip biopsy reports generally report results as 'consistent with Sjogren's Syndrome'.  They do not state that the patient has SjS.  As this article states, there are many reasons that the lip biopsy can have lymphocytic infiltration.  What is important here is that the CORRECT diagnosis is arrived at, not just ANY diagnosis.  One does not want to end up on immunosuppressives because the lip biopsy was done while on anticholinergic meds....which are very commonly prescribed.

 Additionally, there is some evidence that neuropathy can interfere with normal signals to the labial salivary glands making them fail to produce and subject to drying, which causes inflammation or fibrosis.   The same lip biopsy read by one pathologist or rheum could be read by another with differing results.  It is subjectively read....altho it is an 'objective' test.

If one believes that the lip biopsy will yield answers, then by all means, get it.  It isn't brain surgery.

Doctors generally do diagnostics to guide them in diagnosis, not to back up a premise.  It is best to neutrally gather data, and then come to a conclusion.

I am not on PLaquinel....I am on different treatment.  Plaquenil wouldn't do me any good.
What I get for treatment would not have been prescribed on the basis of a + lip biopsy, and that is a good thing, because there is risk.  I  hope every one find the correct answer for their diagnosis.

Below are the criteria.

http://adisonline.com/aging/Fulltext/2008/25010/Sjogren_s_Syndrome__Diagnosis_and_Therapeutic.3.aspx


"Classification criteria can aid the clinician in diagnosing a particular disorder, especially in rheumatology, where patients can present with a wide variety of symptoms. However, classification criteria can also, at times, misclassify some patients, especially when they present early in the course of the illness. Nonetheless, classification criteria are useful in the setting of a clinical trial where standardization of a diagnosis is crucial for comparisons between different trials and institutions.
A number of different sets of diagnostic criteria have been developed for SS since 1975. Most of these criteria include a combination of subjective and objective evaluations. Over the years, the Copenhagen[10] and European[11] criteria have been widely used. It has been argued that the European criteria lacked specificity as lip biopsy findings or positive serological findings (anti-Ro or anti-La antibodies) were not prerequisites in these classification criteria. Currently, the most widely accepted criteria for a diagnosis of SS are the American-European criteria, which were proposed by the American-European Consensus Group in 2002.[12] These criteria consist of six features: ocular symptoms (dry eyes), oral symptoms (dry mouth), ocular signs (at least one positive test result), positive histopathological findings (focal lymphocytic sialoadenitis), objective evidence of salivary gland involvement and presence of serum autoantibodies (anti-Ro and/or anti-La).
A patient is defined as having primary SS if:
* four of the six features are present as long as there are confirmatory histopathological labial gland biopsy findings or positive serology with anti-Ro or anti-La antibodies;
* three of the four objective criteria are present.

The sensitivity and specificity for a diagnosis of primary SS using these criteria are 96% and 94%, respectively.[12]
Secondary SS is defined if a patient has keratoconjunctivitis sicca or decreased saliva production plus any two of the following features: objective evidence of dry eyes or mouth or positive histopathology in the setting of an associated connective tissue disease.
The American-European Consensus Group has also listed a number of exclusion criteria, including previous head and neck radiation treatment, hepatitis C virus infection, pre-existing lymphoma, sarcoidosis, graft-versus-host disease, AIDS and anticholinergic drug use.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Linda196 on February 18, 2010, 07:13:20 PM
I had pre-existing sarcoidosis when I presented with SjS symptoms. All my blood work is positive, but I still had a lip biopsy to clarify the situation because of that line in the criteria that states sarc is exclusion criteria.

My biopsy was specifically to identify the type of white cell that had infiltrated the salivary glands...had it been the same granulocytes that have been present in my other tissues as a result of sarc, we would have stuck with that as DX, but because the leucocytes were different, I was DXd with SjS in addition to sarcoidosis, so not every case fits the "guidelines".
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: malew/sjogrens on February 18, 2010, 10:24:52 PM
That is why you go to credible and qualified physicians instead of self diagnosing. You can worry yourself sick by researching and researching what is wrong with you. Let the doctors figure it out.

http://www.medicinenet.com/sjogrens_syndrome/article.htm#4howis

The diagnosis is strongly supported by the abnormal findings of a biopsy of salivary-gland tissue.

The glands of the lower lip are often used to obtain a biopsy sample the salivary-gland tissue in the diagnosis of Sjogren's syndrome. The lower lip salivary-gland biopsy procedure is easily performed under local anesthesia with the surgeon making a tiny incision on the inner part of the lower lip to expose and remove a sample of the tiny salivary glands within.

This was the final procedure that confirmed my dx. It was the last piece of the puzzle.

Chronic dry eyes
Occasional dry mouth
joint pain
fatigue
burning and tingling in arms and legs
Positive ANA
Slightly above normal SS-A
Positive Rose Bengal test
and then Positive lip biopsy.






Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: eyeamdry on February 18, 2010, 10:34:41 PM
Male w/Sjogrens---If you're taking meds for SSJ (ie methotrexate, plaquenil, prednisone etc) are your blood levels returning to normal?  If so, and in many cases they do, does that mean you no longer you have SS?  I'm just curious about your observation.  Best, Lucy
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: malew/sjogrens on February 18, 2010, 10:54:44 PM
Just diagnosed in 10/2009. Started Plaquenil on 11/6/09 and finally the joint pain and fatigue are better as of New Years day. I have not had any recent blood tests since I went through a battery of them to help with my dx. I see the Rheumy in April. I am not sure how often he will need to do blood tests.

My Rheumy said there is no cure for Sjogren's (like most, if not all AI diseases) and it does not go into remission. He said what some people think of as remission, just means that they are not having flares and are managing their disease. He said that Plaquenil helps with joint pain and fatigue but not the dry eyes or mouth. He said that I will have this the rest of my life.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: eyeamdry on February 18, 2010, 11:09:06 PM
Male- that is pretty much my understanding.  I have to have bloodwork done every 8 weeks or so.  I'm 3 years on this, with them adding Fibromyalgia about 6 months ago.  Six month after my SJS diagnosis, I had a b. cancer diagnosis.  I've just been full of dx for the past 3 years. 

Meds have definitely helped the SJS.  My mail problem remaining is the fatigue and I believe it's caused by the radiation as much as the other stuff.  I've lost 3 years lying on the couch watching the world go by.  Am looking forward to spring as I live in a northern state.  Good luck.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Billydude on February 19, 2010, 11:46:02 AM
eye...the fatique is not necessarity from the radiation.  I think many of us feel overwhelming fatique.   I'm sorry you had to deal with the breast cancer on top of everything else.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: irish on February 19, 2010, 03:02:56 PM
This has been a very interesting thread. It has brought to focus the fact that we are all different and all the symptoms and blood work we have is different. It is such a complicated thing to need all the medical care to get a diagnosis. The thing with the AI is that is really is not set in stone. A specialist is needed to diagnose and to prescribe the needed medications.

Even doctors go to doctors when they get sick. They know that they need someone who knows what is going on and has a discerning eye. It takes a lot of info and good subjective/objective information to come up with a diagnosis and it is best done by someone looking in. When we are trying to self diagnose it is so easy to just pigeon hole symptoms and come up with what we think it is without the knowledge to rule out what it isn't. That is the important ability of a trained doctor. It may seem so easy to diagnose sjogrens in a person with autoimmune disease but the other possibilities are endless. The use of a lip biopsy is just a very small item in this dilemna.Irish ;D
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Butterfly on February 19, 2010, 07:33:35 PM
Woolygimp, I recently had a lip biopsy to confirm Sjogren's. My previous doctor had been treating me for symptoms of Sjogren's and when I switched doctors he recommended the lip biopsy. I saw dentist at a local salivary clinic. She is head of the department and is a professor there. You may want to do some research in finding a physician that is qualified and has performed numerous lip biopsies successfully. I had to be off the plaquenil and saligen for 3 months before she would do the lip biopsy. She said it could affect the results. It was the longest 3 months of my life. I was so dry, exhausted, and my joints were so painful. I wish my first doctor had requested the lip biopsy back when she first thought I had Sjogren's. It would have saved me some major headaches with treatment and disability pay. My results came back positive and I resumed both meds. Now I have a confirmed diagnosis. If you ever file for disability because of your condition you will need a diagnosis by a doctor. I agree with the others-you need to be careful. You need specialized eye tests every 6 months to detect complications sometimes seen with plaquenil use. I hope you get the answers you need.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: eyeamdry on February 19, 2010, 08:58:04 PM
Quote
If you ever file for disability because of your condition you will need a diagnosis by a doctor. I agree with the others-you need to be careful. 

Butterfly, I'm not arguing with you but want to bring out a couple of things to ponder.  I'm too old and sick to argue, most of the time.  Especially on the computer as it's hard to see.

A person could be filing for disability because they were very sick and still not have a positive lip biopsy.  Suppose they didn't know (and/or their docs) didn't know they had Sjogrens?  The subject of a lip biopsy would not come up in that situation.  The person, however, could file disability if he so chose.  So, I don't think that statment rings true, even if one does have Sjs and that positive bloodwork would work as a positive.  There is sure no guarantee on disability whether you have Sjs or not. 

I filed for disability before I knew I had Sjogrens, and just with my eye problems, although they were very bad because of surgeries and I got disability on first try.  Just a few weeks later I finally had some answers.  I'd had Lasik surgery and my eyes became dry and painful with declining vision.  No time in seeing docs around the country did any of the ophths bring up possible Sjogrens.  It was me who thought of it.  I got disability even though my Lasik surgeon said to me straight-faced "you'll never get it."  Well, I did.  No attorney, no turndown.  Lucy
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Bernice on February 19, 2010, 11:02:30 PM
WOW!

This has been some kinda thread!

Well I am going to attempt to address this from the point of view of yet another legally blind person. Believe me sight next to you life is one thing you don't want to lose.

What could be worst than going blind and ending up with your body constantly wrecked in pain? Knowing you did something to cause it! I too say be careful with this it could lead to more problems than you may be able to tolerate. and I don't mean the occasional pains and discomforts, there are pains that are none stop, alot of them caused by medicines that someone should not have been using. In other words we really have to be careful with ALL medicines, especially those not prescribed by a doctor that have considered many things before px. My doctor will not even consider giving me this med. because of my eye disease, how do you know you don't have a eye disease of some kind that this med. will trigger in some way if you have not been to an eye doctor lately, many of them develope from one visit to another?

I would suggest you find a doctor that will treat your symptoms rather than leaving you to suffer in the wait. Most of us know and understand hurting so bad you are desperate, we can cosider Micheal Jackson.

Now are you sayig your skin is so dry that vaseline dont work? Try wetting your skin first then applyig a good coat, you may have to reapply later in the day, BUT if your skin is sucking up VASELINE faster than you can apply it then you really do need to go see a derm. That don't sound like SJS! And it sure don't sound like good ole vaseline!!!!!!

In some countries that lip thing, (which I did not have, SJS always shows up in my bloodwork with no doubts) is not even done anymore. It like most things is not always proof positive in all cases to be correct.


Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: eyeamdry on February 19, 2010, 11:14:46 PM
Bernice, most people have never heard of your eye disease, even more than have never heard of Sjogrens!  I know what it is because of my situation with Lasik surgery and then cataract surgery.  Your disease is very. very serious and also quite rare.  I'm glad things are going smoothly for you at this time.  Even with my butchered, zero schirmer's eyes, bad vision--I've been on Plaq for 3 years ad my eyes are the same--junk.  LOL.  I do get them checked at least every 6 months though.

Yeah, you folks with regular eyes don't take them for granted.  Also stay away from Lasik/PRK surgeons.  Sometimes surgery is needed but in most cases (mine) it was a want.  Bernice's keratoconus is something when the shape of the eye becomes cone shaped.  Some people get this after Lasik.  It requires very special care and as I said is very worrysome.  I've had to do all the research on my eye problems because the butcher eye surgeons denied there was any problems, just like the rheumys. (some)
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: kim31072 on February 20, 2010, 06:01:20 AM
Quote
If you ever file for disability because of your condition you will need a diagnosis by a doctor. I agree with the others-you need to be careful. 

Butterfly, I'm not arguing with you but want to bring out a couple of things to ponder.  I'm too old and sick to argue, most of the time.  Especially on the computer as it's hard to see.

A person could be filing for disability because they were very sick and still not have a positive lip biopsy.  Suppose they didn't know (and/or their docs) didn't know they had Sjogrens?  The subject of a lip biopsy would not come up in that situation.  The person, however, could file disability if he so chose.  So, I don't think that statment rings true, even if one does have Sjs and that positive bloodwork would work as a positive.  There is sure no guarantee on disability whether you have Sjs or not. 

I filed for disability before I knew I had Sjogrens, and just with my eye problems, although they were very bad because of surgeries and I got disability on first try.  Just a few weeks later I finally had some answers.  I'd had Lasik surgery and my eyes became dry and painful with declining vision.  No time in seeing docs around the country did any of the ophths bring up possible Sjogrens.  It was me who thought of it.  I got disability even though my Lasik surgeon said to me straight-faced "you'll never get it."  Well, I did.  No attorney, no turndown.  Lucy

I dont want to argue either but you cant just file for SSDI/SSI based on the fact that you are very sick.You DO have to have an illness that is in the SSA bluebook of recognizable illness that qualify you for disability.Just being very ill and not knowing what is wrong doesnt cut it with them.You do have to have a formal diagnosis to file under. http://www.socialsecurity.gov/disability/professionals/bluebook/AdultListings.htm here is a link that provides the qualifying illnesses and yes they do have to be confirmed by a dr.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Woolygimp on February 20, 2010, 11:53:11 AM
WOW!

This has been some kinda thread!

Well I am going to attempt to address this from the point of view of yet another legally blind person. Believe me sight next to you life is one thing you don't want to lose.

What could be worst than going blind and ending up with your body constantly wrecked in pain? Knowing you did something to cause it! I too say be careful with this it could lead to more problems than you may be able to tolerate. and I don't mean the occasional pains and discomforts, there are pains that are none stop, alot of them caused by medicines that someone should not have been using. In other words we really have to be careful with ALL medicines, especially those not prescribed by a doctor that have considered many things before px. My doctor will not even consider giving me this med. because of my eye disease, how do you know you don't have a eye disease of some kind that this med. will trigger in some way if you have not been to an eye doctor lately, many of them develope from one visit to another?

I would suggest you find a doctor that will treat your symptoms rather than leaving you to suffer in the wait. Most of us know and understand hurting so bad you are desperate, we can cosider Micheal Jackson.

Now are you sayig your skin is so dry that vaseline dont work? Try wetting your skin first then applyig a good coat, you may have to reapply later in the day, BUT if your skin is sucking up VASELINE faster than you can apply it then you really do need to go see a derm. That don't sound like SJS! And it sure don't sound like good ole vaseline!!!!!!

In some countries that lip thing, (which I did not have, SJS always shows up in my bloodwork with no doubts) is not even done anymore. It like most things is not always proof positive in all cases to be correct.




The plaquenil that I've been taken has improved my skin by far the most.  I suffer a "flare" in dryness everytime i get "glutened" because I have celiac disease, and I got glutened last week and it was the most mild reaction that I've ever had.

My skin has improved a hundred times over and while my mouth and eyes still aren't anywhere near normal, my skin is great.  I don't see how this medication could cause that kind of improvement if it wasn't autoimmune inflammation of the skin causing the dryness.

Dry skin is present in 50% of SJS cases.

Doctors have tried treating me for addison's, hypothyroidism, hypoaldosteronism, etc. even with normal lab values and none of it has helped.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Scottietottie on February 20, 2010, 05:08:24 PM
Hi Woollygimp

Just wondered how much thyroxine or equivalent you are taking??

Plaquenil took a long time for me to feel any benefit. How much of it are you on?

Take care - Scottie  :)
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: eyeamdry on February 20, 2010, 07:55:20 PM
Kim, all I know is that I filed for disability for eye problems, dryness being part of it.  I had visual problems but they do not prevent me from having a driver' license.  I filed for social security disability and got it two years before any Sjogrens diagnosis.  My eye doctor told me that I would not be able to collect.
All I can say is the proof is in the check that I've been drawing for the past 5 years.  

I'm only telling what I did. My doctors all filled out the paperwork.  I had arthritic problems that didn't make me crippled, some minor heart irregularities, but my eyes were what I filed on.  I, nor any doctor had an inkling that I had Sjogrens.  After diagnosis 3 years ago, the rheum said i'd probably had it for 7 years.

What I'm trying to hint to people is: I was told by EVERYONE that NO ONE gets through on the first try.  I went 10-12 weeks from filing to getting my first check.  I actually had a check in my mailbox before the phone call letting me know I was approved.  I did it myself.  Others use attorneys.  I consulted an attorney and he said to come back if I was turned down.  I wasn't turned down, so I didn't have to go back.

My eye doc, who was much responsible for the condition of my eyes told me that I'D NEVER GET SOCIAL SECURITY.  Well, I actually thought he might be right, but since I couldn't work any more, I filed anyhow.  I got it, so he wasn't so smart or knowledgeable about the process.  I'll bet he doesn't tell any more patients that.

So, from the beginning if I'd listened to everyone AND MY DOCTOR, I'd have been without income.   Instead, I thought I could only try and see what happened.
I know too many people have to keep filing and having meetings.  But, it that's all one listens to, they are likely to not even bother.

Lucy
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Bernice on February 20, 2010, 08:17:00 PM
Wool, My point is I fully understand what it is to what to be relieved of any discomfort especailly one that plagues you everyday, BUT sometimes we think what we are currently dealing with is the worst and we seek almost any measure to be relieved of it only to end up with far worst than what we started with. I pointed out that I am legually blind only to stress to you to please do not take chances with your eye sight. I can PROMISE you you DO NOT want you sight diminished in the least bit. I lived many, many years unable to even see my own face clearly and I can PROMISE you the choice between seeing my face and having my deseret dry skin (ecezema) cleared up was a no brainer, I would choose to see any day. Wehn you can't see your face those little flaws really don't matter that much!!!

Another point I made was that many things happen to us without us causing them, but it lays heavier on our minds and hearts if you knowingly cause it, especially if it turns out to be something as drastic as lost of sight!

WHAT I WANT MOST UNDERSTOOD FROM MY POST IS TO JUST PLEASE BE CAREFUL!

Eye, Thank you so very much, yes! I am blessed to finally have these lens that has opeed up the world to me at last. I'm sure you made a mistake when you said my eyes are cone, ::) ;D ;D it's the corneas that raise up in cone shape causing distortion of focus! This has to be detected by your doctor only, you can't look in mirror under closest observation to see this in a eye.

It's one of those unheard of things like sjogren's and like sjogren's it's really not as rare as might be thought.

Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: eyeamdry on February 20, 2010, 08:29:06 PM
Bernice, the only reason I know what keratoCONUS is............is because of all the reading I've done about problems after Lasik surgery and things that might help us people who had botched surgeries.    Do you see the CON in keratoconus? 

Many of the surgeries have had to deal with keratoconus eyes after the refractive surgeries.  Sometimes doctors take people who have keratoconus (like you) and perform Lasik or other surgery on them.  This is akin to murker.  Anything I can do to inform people of the dangers of refractive surgery, I will.  I had not heard of problems when I had mine done.  Doctors denied it caused dry eyes or other problems.  Now that I, along with many othere have come along belting out "you hurt our eyes" people at least have a chance to think about it.  Most of us in the early days, knew nothing of what could happen.  The docs didn't tell us and most people were afraid to say anything was wrong with their vision.

Ok, you are good now, I'm not. lol.  You're the only one "I know" with keratoconus.  Lucy
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Bernice on February 20, 2010, 09:00:29 PM
Lucy, My heart really goes out to you because I fully understand what it's like having to live without good sight and hoping and wondering if something will come along to correct them. I think of you often when I hear someonesaying they want laser surgery, like my husband, I've tried to tell him not to. I think vanity and convenience causes many to do this, they don't want to wear glasses, but like I said there is always SOMETHING worst than what one currently deals with.

Like you I can only warn! We take things for granted until we loss it, eye sight is a big gamble!

I've only met one other person with keratoconus before I went to Boston to doctor for lens, there I met about three or so, I've never met anyone else with sjogren's! My grandmother and her twin sister were both blind from what my doctor believes most likely was keratoconus, then it was underdianosised due to need of special equipment to see it in eyes unless it gets really bad, but even then doctors did not always know what it was when they saw it. It is is progressive disease that like sjogren's is different in each person some don't advance enough for it to be picked up by an inexperienced doctor.

You are right laser surgery would have been one of the worst things I could have done, thank God my doctors refused it when I asked about it, I was desperate and would have done it in a flash if I found one that would have done it! You know we always thin something won't happen to us! I've met some cons, but none willing to do that!
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Woolygimp on February 21, 2010, 11:09:21 AM
Lucy, My heart really goes out to you because I fully understand what it's like having to live without good sight and hoping and wondering if something will come along to correct them. I think of you often when I hear someonesaying they want laser surgery, like my husband, I've tried to tell him not to. I think vanity and convenience causes many to do this, they don't want to wear glasses, but like I said there is always SOMETHING worst than what one currently deals with.

Like you I can only warn! We take things for granted until we loss it, eye sight is a big gamble!

I've only met one other person with keratoconus before I went to Boston to doctor for lens, there I met about three or so, I've never met anyone else with sjogren's! My grandmother and her twin sister were both blind from what my doctor believes most likely was keratoconus, then it was underdianosised due to need of special equipment to see it in eyes unless it gets really bad, but even then doctors did not always know what it was when they saw it. It is is progressive disease that like sjogren's is different in each person some don't advance enough for it to be picked up by an inexperienced doctor.

You are right laser surgery would have been one of the worst things I could have done, thank God my doctors refused it when I asked about it, I was desperate and would have done it in a flash if I found one that would have done it! You know we always thin something won't happen to us! I've met some cons, but none willing to do that!

Well like I've said many times, I have already scheduled a doctors appointment to get everything taken care of.

From everything I've read, people do not lose their sight immediately taking their medication, and it's very gradual over very long periods of time.  You can notice changes in vision and stop the medication.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: eyeamdry on February 21, 2010, 02:46:26 PM
Wool-I think this thread wandered a little bit.

I've taken Plaquenil for 3 years and it has not hurt my sight.  My visual problems were prior to Plaquenil and not related to it.

You are right, I believe, any damage would be over a long period of time and the dr would have you stop it before it did much damage.

Best, Lucy
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Bernice on February 21, 2010, 05:32:55 PM
Wool, the only thing that concerns me about ordering meds off the internet is that you don't always know for sure you are getting exactually what you think, there's been too many reports of this being the case.

Wool, You are a grown person free to do as you think best for YOU! None of us can force our oppinions on you or anyone else for that matter. It's just that we do have to be mindful of others as well, there are alot of people that come to this site newly dxed feeling very confused and afraid to the point of desepration and many that have yet to get their doctors to give them the dx but strongly feeling a need for treatment so it is very important that it is clearly stated that ordering meds without doctor's awareness is NOT considered a wise decision.

I personally do not mean to offend you in my bluntness, though you may very well have started this thread just know that it represents far many more others that are in the same place as you are in seeking help. Let's say you are truly blessed to have found the real deal, others may not be. This is very important to keep in mind!

Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: eyeamdry on February 21, 2010, 05:50:05 PM

WOOL, I COMPLETELY AGREE WITH BERNICE ON THE ABOVE POST.  I HAD FORGOTTEN ABOUT THE MEDICINE OVER THE INTERNET, WHICH I WOULD NEVER DO.  WHAT I SAID ABOUT MY TAKING PLAQUENIL AND NO PROBLEM WITH MY EYES IS TRUE. 

WE JUST HOPE YOU WOULD SAVE MONEY SOME WHERE ELSE AND NOT ON SKIPPING A DR VISIT AND BUYING MEDS OFF THE INTERNET.  THO, AS B SAYS YOU ARE AN ADULT.   ;D :D ::)  lUCY
 


I THINK I SHOULD SHUT UP NOW.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: irish on February 21, 2010, 08:55:48 PM
wool, You can't tell that you are having eye damage because it doesn't necessarily show up as poor visioin. It can only be seen by the eye doctor when he dilates your eyes the way I understand it. It is something that is very high tech and some types of eye issues have been permanent. We just had someone on the board that had permanent eye damage from her plaquenil. Not the norm but it can happen. Irish ;D
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: kim31072 on February 22, 2010, 05:45:36 AM
Plaq can cause damage to the field vision(what you see from the side)and that is a major part of the testing. http://www.medicinenet.com/visual_field_test/page2.htm  the third link tells what all they do to monitor and test you while undergoing treatment.Yes the eye damage is permanent and no it does not get better..it can continue to worsen after cessation of medication.That is why a baseline exam is required and regular testing recommended(my dr writes me a 6mo script and wont renew until he gets the report from my eye dr-some drs require a yearly check)it is not common but it does happen.Like any med you must weigh benefit/risk.

Also Aralen and Plaquenil are two totally different meds.Yes they are both used for malaria and both have been used in AI patients but usually plaquenil is used because is the least toxic of the two. http://www.eyeupdate.com/pages/plaquenil.html
http://www.drugs.com/pro/aralen.html

I think the issues that you will have is this...when you go to the dr and tell them that you are taking the med they are going to want to know who prescribed it,the dose that was recommended,who your eye dr is and how long you have been on it.If they find no reference to a prescribing dr then you will have to admit to self-medicating..which will not go over well.No matter how well you have responded.

This drug carries warnings(I posted the link-its the second)of blood monitoring to be performed while you are on it and eye exams.It has more potential for issues than plaq and requires more monitoring than just eyes..I would assume thats why docs use plaq instead in most instances...its less toxic.Aralen requires CBC counts to be done while on it to watch for signs of blood issues that were not present before treatment started..if they are detected then the med must be stopped.So you are opening yourself up potentially for more than just issues with a lip biopsy change...you are also taking the risk of changed CBC,liver and hearing function tests.If you have issues and those things pop up then you will have to explain your decision to order meds off the internet and if you arent truthful to the dr then you may require more meds,further treatment,more testing because your dr wont know what is throwing these off.

No dr anywhere is going to like the fact that you are ordering meds off the internet for a condition that you have not had confirmed and are self-medicating...these meds are toxic and you can have issues with them which is why you are supposed to be under doc monitoring before taking them.They see that and it sends up a huge flag-just like saying you take Aunt Sallys pain meds and they made you better so thats what you need(for comparison).

At the end of your post you stated that you werent sure if the plaq would throw off the lip biopsy..but its not plaq you are taking.Just because you feel certain that you are suffering from SJS doesnt make it so.Could it turn out to be the case?Yes...or no.Taking these meds that you ordered off-line is very risky..they do carry health threats(although they are rare)but you could cause testing that needs to be done and be accurate to change because of a med that you are adding in without dr knowledge or consent...and you are possibly going to damage your relationship with your dr now and in the future when he learns that you are choosing to take meds that you feel will help you when he hasnt even found the root of the problem...so you will b shooting yourself in the foot twofold.Potentially throwing off testing and possibly causing further issues to arise and causing your dr to wonder if you ever have another issue will you just order more meds and self-medicate?and that will go onto your file and it will cause you issue..no joke.

I am not wanting to argue and wont just wanted to state a few facts that I dont think anyone here has said yet and you might not be thinking of.Whether or not you continue to self medicate is your choice...I just think its kind of foolish especially if you are looking for a diagnosis but are taking meds secretly that might screw up your results..thats kind of self defeating to me but thats JMHO.

We all want to feel better and lay name to what it is that ails us..but let the dr do the tests,get a confirmed diagnosis,and then let him script your meds.It may take time but will save your relationship with him/her and future drs and prevent hopefully any further issues.Even though you state you are getting relief now you might not be later and might cause yourself further issues or harm.

I hope all goes well for you and you find some solid answers soon.If it were me(and believe me I suffer some days too..this illness is not fun :-\)I would stop taking the meds before it screws up your labs further,causes the dr to look elsewhere because of crazy labs that the med may be causing and go med free so that he can get an accurate diagnosis...anything else is not fair to you.You might end up on more meds,really invasive treatment because the dr isnt aware that you are taking something that may skewer the testing.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Bernice on February 22, 2010, 08:58:48 AM
As stated I've never been on any of this medicine before so I can only ask, maybe it will give further insight. Alright it's been said that the two medicines are NOT the same so it's safe to say you do not have what you thought you had, according to top reply, but what is the normal dosage for both, maybe this will explain the immediate improvement?

Also along the line while being on this site I've gathered that once you stop using these medicines there is a very painful experience. Is this so?

 
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: kim31072 on February 22, 2010, 10:52:05 AM
They are both given based on weight..a certain mg per pds of body weight..usually people arent under the pound restriction but indivduals under a certain weight do require smaller doses..which again is where the doctor comes in/along with the pharm.

I am on Plaq. have never had any real life experience with Aralen and dont personally know anyone who takes it so I dont know if it has similar issues to plaq at start(like tummy upset and so forth that we all seem to have in common)

From what I read of the links Aralen is used more for acute and chronic treatment of malaria symptoms(as a suppressant,terminating acute attacks and lengthening times between attacks)and plaq more for a preventative.*I cant swear to this*it just seems(read wise that it carries more risks as it binds to the internal organs(including spinal column,kidneys,liver,spleen etc)more toxic and requires more specialized testing than just vision checks and rheumy monitoring.Aralen users are recommended to get baseline CBC,vision and hearing tests.Whereas with plaq I have only had to do vision.Both can be used off label for AI but are different so require different monitoring-like I said seems the way Aralen binds to organs causes them to be more careful with monitoring.


I have come off Plaq twice and although I noticed a slight increase in joint issues and fatigue I didnt notice anything that was horrific or terribly painful.this is just me-others may have had a worse time-it just seems like the symptoms it was helping to keep at bay(skin,fatigue and joint issues)start to come back after a while.

These are very slow uptake meds-they take a long time to work-usually the dr will tell you to give it anywhere from 6 weeks to 6 months for the improvement to be noticed..if you get no relief after that then alot of times they discontinue since there is no benefit-but there is still vision risk.They also have a long half-life-which means they take a while to clear the body after you take your last dose..I think plaq is a long time the references I have found all say 1-2 months for it to clear completely..I guess because it takes a while to build in your system and settle in..so it takes it longer to be completely eliminated  http://www.answers.com/topic/hydroxychloroquine
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Woolygimp on February 22, 2010, 12:45:33 PM
Kim, you do have quite a few good points.

I wouldn't be in this predicament if it didn't take over 4 months to get in to see a physician.

Now I did tons of research on this medication before I made the decision to take it.  It is prescribed for treatment of Sjogren's, although it has for the most part been phased out for Plaquenil.  It is more toxic but is still considered the "most safe immunosuppressant."  I am only taking 150mg base of Aralen which is lower than the standard dose recommended.

And while my dry mouth and dry eyes have only improved moderately, my skin has definitely improved greatly.  It's not a placebo effect.

I've had no side effects at all so far, no nausea or headaches, or upset stomaches.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Prairie Gal on February 22, 2010, 02:14:05 PM
Wooly, as has been noted, we each have to make our own decisions. But Kim raised some very good points.  I do wonder when you say you've had no side effects from the Aralen; I think you mean you've had no side effects as far as you can tell. Without blood tests, you don't know what's going on internally. 

Prairie gal
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Woolygimp on February 23, 2010, 11:08:39 AM
Another weird thing I've noticed, is that as a kid I use to have fairly sweaty palms when I was nervous.  After I got sick, my palms no longer ever got sweaty... no matter how nervous I got.

Now that I'm on the Aralen, I'm starting to get sweaty palms again... the first time that has happened in 5 years.  I don't mind it at all;  I didn't even consider the lack of sweaty palms may even be a symptom, and it's not something I immediately noticed until they started sweating again... then I was like woah, this hasn't happened in forever.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: inga on February 23, 2010, 11:52:52 AM
Anhidrosis is the inability of the sweat glands to respond to heat, they generally respond to stress.  Most people who are anhidrotic still sweat to stress.  Anhidrosis results from small fiber neuropathy.  It does not respond to Plaquinel or other immunoppressive except perhaps steroids, and of course IVIG...response is generally slow.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Woolygimp on February 23, 2010, 12:19:04 PM
The only lack of sweat I've noticed was on my palms, I "think" my normal sweat secretions, especially during heat remained the same and were unaffected.
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: gurs on February 24, 2010, 10:31:16 AM
Woolygimp,

Glad to hear your doing well. I dont blame you in the least for taking this stuff. I would eat doggie-do if i thought it would help me.
Also, I keep hearing people saying about "How long" cetrain meds take to work...everybody is so different..I know for a fact that I felt better
overnight when starting a few medications ,and the doc's said 'No way" its not possible..I still laugh when I think about it. I think we know when
"we" are feeling better right???

Everything is so risky...I was in bed for 2 months after an IVIG infusion that was supposed to be harmless to me, but again made me even sicker?

Hope all continues well for you!
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Bernice on February 24, 2010, 11:06:40 AM
Gurs,

Though I've never had the infusions I know of no medicines or medical treatments that don't come with some possible side affects. Sometimes we happen to be the misfortune ones that are affected by those with the even least.

The thing here is first fully understanding what you are taking, second having a medical profession aware of what you are taking, especially if they have to be the ones to treat any side affect that may occur. Third, Trusting yourself to someone over the internet for medical treatments, sight unseen! Fourth, self diagnosis!

http://www.intgovforum.org/cms/index.php/component/chronocontact/?chronoformname=WSProposals2009View&wspid=265 (http://www.intgovforum.org/cms/index.php/component/chronocontact/?chronoformname=WSProposals2009View&wspid=265)

http://www.sciencedaily.com/releases/2010/01/100120085348.htm (http://www.sciencedaily.com/releases/2010/01/100120085348.htm)
Title: Re: Botched Lip Biopsy but Positive Response to Plaquenil
Post by: Billydude on March 10, 2010, 10:46:16 PM
I recently had my second biopsy at UCSF as well.   The very next day I couldn't even tell if I had one at all.