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Posted 10/4/2010 8:08 PM (GMT 0)
So i had my doctor's visit today...

I was on plaquenil 2 days a wk for the past 5months (since my last doc's appt)...


I have been getting some minor pains in my knees mostly..And well the test showed that i am flaring again.

So i gotta go back one plaquenil everyday now until my next visit in jan..

Am so depressed and sad now. The last couple of times I was fine..all the test were good.And the doc said that this time i could be coming off of the meds. I was reallly looking forward to coming off the meds..


cry Such is life.
Posted 10/4/2010 11:38 PM (GMT 0)
Sorry to hear this! Hopefully the plaquenil increase will keep things from getting worse. Hopefully this will help your knee pain get better and I am a little supprised your doc would take you off of plaquenil especially if it is helping. Keep us posted on how ya doing!!
Posted 10/5/2010 1:27 AM (GMT 0)
Thanks :)

From the very beginning he said (the doc) that once in remission meds are not necessarily needed with lupus. So he decreased it to 1ce a wk...And this visit once my bloodwork was well was supposed to be 1ce every other wk until i was off completely. But no luck there. :(


And yeah i hope it does stop the flare...he still plans to have me of of it tho, once all is well! *fingers crossed*
Posted 10/5/2010 2:16 AM (GMT 0)
That is very unusual. Most drs prescribe 2 plaquenil per day and keep that up until all symptoms and bloodwork have been normal for quite a while. From what I've read, it is very unusual for such a small amount - 2 weekly - to be helpful. You are very lucky.
Posted 10/5/2010 12:10 PM (GMT 0)
Really @ Lynnwood? I was never on 2 per day..My most frequent was 1 per day...and every doctors visit (since i was diagnosed over 2 yrs ago) according to my bloodwork (which was always in my favour) the dosage went down...1 every other day, then, 3 a wk, then 2 a wk.


Unfortunately..its back up to 1 a day...hopefully as others suggested this will stop the flare.


Oh and my doc believes that once the disease in under cotroll (as in remission) then pills arent necessary if its already dormant..but will do bloodwork often to tell when a flare is coming on (like now)
Posted 10/5/2010 2:48 PM (GMT 0)
That is a strange regiment to me.  My rhuemy tells me that I will probably be on plaquenil the rest of my life because it keeps the disease at bay.  It is the miracle drug for us lupies or individuals with autoimmune problems.  None of us like taking all the drugs we have to, but if we want to have a long and productive life, than this is what it takes.  Before I was diagnosed in March of 2009 I only took birth control and a tylenol once in a while.  Now I have a whole drawer filled with meds.  Hope you come out of the flare soon, you are lucky that it is only minor pain in the knees.

Hugs and Angels,

Lynnette

DX - sle and carpal tunnel

RX - plaquenil, prednisone, etolodac, lisiniprol, darvocet and flexeril when needed, hormones and vitamins

Posted 10/5/2010 2:57 PM (GMT 0)
are you seeing a rhuematologist?
Posted 10/5/2010 10:52 PM (GMT 0)
thanks @ Lynnette that was cute...:) made me smile..and the knee pain is d most distracting but there r other minor joint (wrist, and fingers) i dont pay the little ones no attention tho.

And @ Amy yes i am seeing a rheumy..how else would i be diagnosed as well as treated? lol

And he is really good tho..the best in my country. And i have spoken with some of his patients who are in remission and not on any pills and doing well..So i hope that will be me soon! :)
Posted 10/6/2010 11:02 AM (GMT 0)
several people are treated by their PCP and diagnosed. Then they think they can treat them as well as a rhuematologist, even though they are not as highly trained to treat Lupus. I just asked becasue I have never heard of a rhuemy doing medicine quite like yours is doing. A lot of times when you are diagnosed early, in your teens and 20's continuous use of plaquenil will prevent organ damage and generally everyone is kept on it for a LONG time unless they can't tolerate it. That is why I asked!!!

I know you probably won't since you like the idea of no pills BUT I would strongly recommend seeing another rhuemy and getting their advice. You don't want to push yourslef off of medicine that you tolerate well when it is helping and you don't know what all it is preventing!
Posted 10/6/2010 12:35 PM (GMT 0)
Oh..i didnt know people did that (PCP)....I just assumed we all were treated by our rheumys.. Sorry :(

But like i said before...I have spoken to some of his other patients that had been there for years...and when they remission, he takes then off of their meds and they are fine (internally and externally) They just to frequent blood work to ensure all is well inside (because we all kno feeling great doesnt mean u r great)

But i will definitely look into ur suggestion @ another rheumy. But he is the best where i am from.

I just thought it made good sense tho.... While in remission (the disease is dormant) no internal or external symptoms, then y take pills to suppress it, if is is already dormant??

But thanks for the concerns...Will check up on what u all said! :)
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