Does Plaquenil really help Hughes Syndrome or APS? (not lupus anticoagulant but high anticardialipin)

[heatherdwtt]

My new rheumatologist says I may be able to stop the Plaquenil because she isn't sure it actually will help my APS. I have heard, and read, that it does help so now I am confused/

[MaryF Administrator]

Please don't rush into stopping it, it helps greatly with fatigue in many cases, but you have to wait a while for the effect to reach maximum potential. Mary F x

[Skyllark]

also be a lookout for side-effects, it does help though... it really doe... that's about all I can say!

[soul22]

Hi i

can share regards your topic.i was suffering heavy fatigue photo sensitivity,joint pains arthritis lupus.i was on methotrexate helped with joint pains inflammation, but was only when offered and started planqnil did i feel relief from fatigue for me very quickly 3 weeks on just 1 tablet for 3 months then it weaned off again so they upped to a full dosage what a difference.

at this time and before i was testing positive for mild aps,since being on planqnil my aps test mostly negative rheumy said it is thinning my blood enough so no further help needed.

however year ago when lupus became more active due my mum battling cancer and family struggles my blood came back high positive for anti anticardiolipin....they added Imuran and my aps test back normal again.........so far no further medication needed to thin my blood.

anyway i would stay on the drug unless severe side effects i was off it 2 weeks and that was all it took for me develop very high aps test results .headaches leg pains had be checked for clots.

hope of some help

[Peecue]

I was put on arcoxia by my rheum, but little help for pain, when I saw Prof Hunt she a said that only in APS does it work, she changed it to Plaquenil, what a difference after 3weeks. My Gp started prescribing as generic name and was given the generic tablet pains came back asked GP to prescribe plaquenil only and now the pain in my hands and feet are reduced

[Rhian21]

I've been on plaquenil for over a year. I was told I would be a new woman if I took it. I believe it had no positive effect what-soever and I am still left with all the old symptoms + I believe it made my dizzy spells much worse. I have tried reducing it with my GP's approval but have now come off it all-together and yey my dizzy spells have definitely lessened (This is good) but I am just floating around now without any help for the initial symptoms I hoped plaquenil would help with.

[Kathy829]

I can only speak to my own APS. The plaquenil took about 2-3 weeks to really start working but when it did I had less leg pain, more energy, clearer mind. It made all the difference! I still have flares and bad days but before plaquenil they were ALL bad days.