Do I or don't i?: My question is this, I started... - LUPUS UK

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Do I or don't i?

Valzobel profile image
7 Replies

My question is this, I started taking plaquenil a month ago 200mg a day. I have not felt this well for about a year. I have not been diagnosed with anything as my test results are negative. Since I feel well on the plaquenil, is this coincidence or not? What if I go off of it to see if there is a difference? What do you think? And if I feel better on it does that mean anything?

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Valzobel profile image
Valzobel
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7 Replies
misty14 profile image
misty14

Hi Valzobel

It looks as if you have an immune illness of some kind because Placquenil has worked. It is possible to have inflammation and blood tests to be negative!. As you've got good benefit I'd stay on it but it's your decision. Hope your eyes are being checked annually!.X

ShannonB profile image
ShannonB

I think I you're feeling better than you have for a year, it's worth staying on the plaquenil. 200m a day is small dose and I doubt it's a coincidence. I once went off thinking the same and immediately got worse and it took ages to get stable again. Great that it helps, stay with it - my 2 cents. :)

katensteve profile image
katensteve

I have osteoarthritis with and inflammatory component (as yet no diagnosis). The medication worked that quick for me too, within two weeks I was feeling great so it can work that way. Good luck

Valzobel profile image
Valzobel

Thank you! I have decided to stay on for now. After some research I decided it was worth it. I am very nervous to go over the whole extreme weakness scenario again. It took 7 months to get over it and that's when my rheum gave me plaquenil. I see her again in Aug and if she wants me off we can discuss that then. Will be making an eye appointment very soon!

tennissenior profile image
tennissenior

Why would you take a med when you haven't been diagnosed with anything - i.e., Plaquinel is taken for Discoid Lupus. Every med has side effects, whether they are immediate or somewhere down the line. Who gave you the Plaquinel and for what???? Negative ANA - how many???

Fighting profile image
Fighting

Plaquinel is prescribed based on your weight and if I'm not mistaken, 200 mg is the lowest dose.

Bonnie39 profile image
Bonnie39

I have confirmed secondary APS with queries over FM, SLE and ME for my primary. Started on Plaquinel a year ago and it has changed my life.

Infuriatingly Plaquinel has now ceased manufacture and for the last week I've been taking another brand. Symptoms have returned and I'm now feeling worse than I have for a year.

I'm trying another brand tomorrow.

If it helps, take it. These conditions are hard to pin down, and it's a relatively inert drug provided you keep on top of eye checks.

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