Plaquenil Only for Lupus

[sflynn84]

Hi everyone. I am wondering if anyone is successfully treating their lupus with plaquenil only. My rheumatologist has said 'hopefully' this is all I need and things won't get worse. I have been on it for 9 months and for the most part feel well.

[Sara_A]

Hi, yes I was previously really quite good on just hydrox then I stopped it to have my children and when re starting it it’s not worked the same on its own for me and now hydrox only isn’t enough for me. But then I have had a flare since my now 2 yr old was born! Just can’t seem to control things so on2 nd immunosuppressant and continuous steroids.

But yes it can be enough so stay positive, if it’s working for u now I would try not to worry about the future!

[Jess_doyle]

I’ve been on it for 9 years 3 years so far no serious flares still have the odd sore and headaches but it’s never gonna go fully away, the medication really does help. Just learn what you can and can’t do, don’t be shamed to ask people for help when you need it. Don’t over do it

[chrisj]

I've been taking it for about 13 years and its helped with most of my symptoms. Its the only thing I take for the mild SLE diagnosed in 2005, its worked for me

[leslieliesel]

Hi I have been on plaquinal only also..7 months now..I also am doing well...But my Rheumy said when I was Dx'd last fall at age 62...because I am an Old White Female I most likely will not develope and more problems, other than the ones I presented with.. fatigue, BAD photo sensitive rash and joint issues....My joints do not hurt, I still have fatigue and still sun sensitive...but no hand etc pain is wonderful!!

[elizaSunflower]

I agree with the others. I have been on plaquenil only for a year and a half (with an occasional hydrocortisone ointment for rashes). The plaquenil seems to reduce my flares. It took about half a year before I really notice how much it helped. Because I'm hoping to put off any other drugs as long as possible, I am also trying (but not always succeeding) to make lifestyle and diet changes to at least reduce triggers.

[sflynn84 in reply to elizaSunflower]

Can I ask what diet and lifestyle changes you have made? I am mostly gluten and dairy free. I think giving up the dairy has helped my stomach issues tremendously. I do allow myself to order what I want if we are eating at a restaurant though.

[elizaSunflower in reply to sflynn84]

It is still a work in progress. I too have noticed that I have issues with gluten and dairy (but am not great about avoiding them - I'm not terribly consistent with anything). Exercise, like running, helps a lot, but then I have to worry about the sun and sometimes it has a very draining effect on me.

The best advice I got was from a colleague with Crohn's disease. He suggested try anything that might work but keep track of what you are doing/eating and pay attention to how you feel afterwards. Over time you develop a sense of what works and doesn't work. At first it is all overwhelming, but over time you really do develop a sense of how your body is reacting.

Learn to let go and be easy on yourself. That has really helped in trying to deal with my stress (my biggest trigger). For me what has worked is allowing myself to fail. If I have a deadline that feels like it is killing me, I take a mental step back and realize that it is not just a figure of speech anymore. I let it go. I will still do my best, and I will talk to the people I need to about it, but it is not worth my long term health. I also allow myself days where I just don't get anything done. If I am having a flare or even just mental fog, I have realized that struggling to do anything doesn't get me anywhere, and I will feel just as bad the next day. If I allow myself to not do anything when I feel like that, I bounce back quicker. Since I'm a perfectionist, letting go and allowing failure is huge.

I don't know if that helps, but that's what has helped me. I still have ups and downs, but looking back, I am doing so much better than I was 2 years ago.

[jennjo]

I have been on Plaquenil for over two years now. The first six months or so I was also on and off Prednisone, but the Plaquenil thankfully seems to be enough now; I had many side effects from Prednisone. My lupus is mild, my numbers have been improving and most days I feel very well. I also saw a dietician around the time I was diagnosed and made some changes to my diet that seem to help me (low sugar, gluten-free and low lactose/dairy, although I do allow myself to eat whatever I want at times!). I also make sure to exercise regularly and get enough sleep, which for me is crucial.

[athi0110]

Hi sflynn84, I have been only on Plaquenil for a big part of 16 years without any side effects. In 2007 I had a flare because, as I was feeling so well until then, I thought it was safe to reduce it to 2 tablets a week; BIG mistake! It took me 18 months to slowly stop the steroids and get back on plaquenil alone. I have been well since. I do watch my diet and I have managed to lose weight but very slowly. At the same time, I try to exercise as often and as much as I can. For me, along with the Plaquenil, exercise is part of my therapy! One thing I definitely avoid is the sun and the other is stress which unfortunately is a bit more difficult for me to control but, I am getting there. A good night's sleep also helps.

If you find that plaquenil alone is doing the job for you, excellent! keep taking it. At the same time, If you try to avoid things that may trigger a flare (as much as pos) and make the good lifestyle choices most of the time, you give yourself a good chance to keep well with lupus, I think.

My best wishes and let us know how you are doing.

[sflynn84]

Thank you everyone for the replies! I have been doing very well on plaquenil since my initial flare up which was almost a year ago. I have changed my diet and exercise almost everyday. I have two little ones and work so I have found that I NEED 8 hours of sleep in order to feel well the next day.

[Maemaep]

I've been on it for about 3 years. I have had to add 2 prescriptions of steroids during that time because of vasculitis flares.

[1sam]

Hi. I guess we are all different. It didn't work for me, I have SLE and nephritis lupus... I feel better with methotrexate and cellcept, no steroids. Good luck!