Botched Lip Biopsy but Positive Response to Plaquenil

[Woolygimp]

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.

[harrigan]

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

[gurs]

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!!!!!

[inga]

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.

[lynnmarie219]

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....

[Woolygimp]

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.

[inga]

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.

[Woolygimp]

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.

[louisa]

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

[RobinBat]

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...

[Epson]

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

[eyeamdry]

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

[gurs]

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...

[inga]

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.

[Billydude]

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.