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Discussion Starter #1
Ok... so I take plaquenil - and I know it's a good drug to maintain my kidney's with my lupus but can someone explain how it does that?
I know my cellcept is an immunosuppressent, no brainer why most of us need those...

I just missed taking half my dose for the last month (of plaquenil) and I feel great and my bloodwork looks excellent - and my kidney function is better than most healthy people - and now I'm back at 400mg of plaquenil again until we get preggo - I'd rather just not be on it and see how it goes but my understanding is that the change in hormones if/when we get pregnant will determine if I can continue the dose with or without it....

did that even make sense?
 

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Hello :)

Plaquenil has been described as an "insurance" medication meaning that it can maintain lupus stability. It has been shown to reduce flares. Many people in remission stay on Plaquenil all the same because it has virtually no side effects.

As you know it can be safely taken during pregnancy and this is often advised these days although many people reduce the dosage as a compromise between taking nothing and their reluctance to take anything. Especially if there have been more serious lupus symptoms such as kidney disease. My question would be, if I have been doing so well on 200mgs a day why increase it to 400mgs a day.
If you haven't told your doctors you had reduced it then just tell them you would like to reduce it or come clean about it.

(Presumably you aren't still taking the Cellcept).

In the most simple terms, Plaquenil works by reducing the acidity of the cells, thus reducing their antibody making tendencies. It has numerous other potential side benefits

I don't know what the change in hormones when you are preg might have to do with whether you continue Plaquenil or not. If you start feeling worse or showing signs of worsening disease the Plaquenil could be increased or more likely, Prednisone could be added.

:)

Hope some help and best of luck
Clare
 

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My two penneth worth,

Plaquenil takes time to build up in your system to reach its potential and that can take months.
If you do decide to stop taking it I would consider a few points:

If medication can only supress the lupus disease and not cure it then it might be that your lupus is at a level where the Plaquenil is working and your lupus is not reacting more strongly than the medication can help with.

I wax and wain. So its possible to consider that when Im not doing so well the Plaquenil is simply doing the best it can but I cant tell.

Some have made the observation from the posts I have read that when they stopped taking the Plaquenil (as they did not think it was working), they felt much worse.

There are those also who take Plaquenil plus other medications.

What I personally would be considering that should I stop then I have to wait a few months again to get any benefits.

I swear mine took 10 months and that keeps me from thinking seriously about stopping it to see what happens.
Quallity of life means I cannot afford the risk.

But I do wonder from time to time.


Food for thought:)
 

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The Other Illinois Tammy
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Hi,
I felt the same way the first time I could not afford the plaquenil, was fine and things went great for a few months. Once it got out of my system I could really feel a difference, not that you will but things are the way they are because of the meds.

I hope that things work well for you and that you do well off the plaqs. Please keep us posted
Tammy
 
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