Should I take Plaquenil

I am a 53 year old female who has tested positive to all 3 of the APS antibodies (very ¬high levels). Although I’ve never been pregnant or had any events I have been under the care of a rhemutologist for the last 10 years. My main symptoms had been fatigue, shoulder and neck pain, headaches and memory problems. The fatigue has been since I was a teenager so I don’t think it’s age related. Is it normal to come home from work and go to bed or sleep all weekend? I was put on 75mg of Aspirin 7 years ago and the change was remarkable – no headaches but the fatigue’s still there. Over the years they have also suspected Lupus (based on positive ANA and anti-dsDNA) however this diagnoses changes from highly likely to unlikely. My INR is 1 which I understand is normal for someone not on Warfarin but is this too low for someone with the 3 antibodies? Warfarin will not be prescribed unless I have an event but is Aspirin enough? Should I take Plaquenil to see if the fatigue/memory problems improve? I am based in Auckland, New Zealand and have private health insurance. Any help greatly appreciated.

13 Replies

  • Hi, I take plaquinil initially for hip pain & fatigue, it also works well for APS patients, as an additional blood thinner, so yes if I were you I would try.

    I am also B12 defecient -before I was diagnosed had extreme fatigue & memory loss so would be a good idea for you to have your blood tested for B12 - also thyroid as these go along side APS.

  • Thyroid is good and I'm okay for B12. Get a B12 injection every three months. Should this be monthly? Also take VitD 10,000mg once a month. Do you have any side effects from Plaquenil?

  • Hi, no Im ok with plaquinil, no side issues, have to keep an eye (sorry for pun) on my eyes, have tests once a year. Im on 400mg a day.

  • As Holly has said trying it is a good idea, as is testing Thyroid, B12, Ferritin and VitD.

    Although strictly speaking most Drs won't prescribe stronger anticoagulants, they are not ruled out completely. If a persons symptoms warrant them then a good Dr will try usually a short course of LMWH to see if it makes a difference. If it does then warfarin can be started knowing it will help.

    I know in Australia however that prescribing could be an issue as they have to stick to the criteria. I'm assuming it's the same in New Zealand?

  • Yes New Zealand doctors won't prescribe unless I have an event.

  • Hmmm I think that's terrible, do they advocate that people have to suffer the affects of clots and have possible life threatening disabilities first! It's very short sighted and whoever set those rules needs to learn to understand our disease before they kill someone! I wonder if they would only give a diabetic half their dose of insulin? Sorry for the rant but it makes me very cross as it also influences medical students in how NOT to treat this disease.

    In your shoes taking Plaquenil is your only other option unless you can afford to go abroad for your treatment!

  • In fairness to the Aussie Doctors, our prescription medication is controlled by what is called 'PBS'. And that strictly defines the criteria under which Doctors are legally allowed to prescribe medications. Anticoagulants are one of these and cannot be prescribed without a proven clinical event. If Doctors are found to be prescribing drugs in contradiction to PBS then they are required to appear before a panel with risk of loss of medical license. Perhaps they could lobby harder but there are so many things they could do that with so we are stuck with it. And being such a 'new' discovery there aren't many Drs truly familiar with it.

  • Hi, you have had some great advice, we usually always mention the D, B12 and Iron testing plus Thyroid, although with Thyroid testing a lot of us end up doing private more detailed testing as the TSH test is rather unreliable. I am on Aspirin, I have had many clotting incidents, serious ones, but they only happened in pregnancy, however I am also on natural desiccated thyroid and also Low Dose Naltrexone. Plaquenil gave me a life threatening type reaction, but this is probably due to my mix of disease which does include Psoriatic Arthropathy and at times Stevens Johnson Disease. However my daughter has been on it for years and it has helped her. You may improve on the Aspirin, but do keep an eye on yourself. MaryF

  • A normal persons inr is 1 without warfarin like u say, so I think inr has no significance unless u are on warfarin. Why was it even tested??

  • I asked for it to be checked. It was 1.9 and then 1. My thinking was the higher it was the less likely I would clot?

  • Yeah, as far as I'm aware inr is only relevant if I are on warfarin but I could be wrong. I've only ever known it be tested on pts on warfarin. I don't think the figure has any significance on ur clotting unless on warfarin?? But I'm not 100% sure but pretty sure!

  • Side effects can include nausea and diarrhoea, I took Plaquenil for three months and had both every time I took it, I didn't see any benefit at all so stopped taking it.

  • That's no good. Fingers crossed I'm okay. When did the nausea/diarrhea start?

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