Author Topic: Botched Lip Biopsy but Positive Response to Plaquenil  (Read 27333 times)

kim31072

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #45 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.

Woolygimp

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #46 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.
« Last Edit: February 20, 2010, 11:56:34 AM by Woolygimp »

Scottietottie

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #47 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  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

eyeamdry

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #48 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
« Last Edit: February 20, 2010, 08:08:47 PM by eyeamdry »

Bernice

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #49 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.


eyeamdry

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #50 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

Bernice

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #51 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!

Woolygimp

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #52 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.

eyeamdry

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #53 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

Bernice

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #54 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!


eyeamdry

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #55 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.

irish

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #56 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

kim31072

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #57 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.
« Last Edit: February 22, 2010, 06:07:17 AM by kim31072 »

Bernice

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #58 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?

 

kim31072

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #59 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
« Last Edit: February 22, 2010, 01:02:35 PM by kim31072 »