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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

My migraines seem to be increasingly worse since the dr removed the plaquenil since I now have retina damage.

A MyLupusTeam Member asked a question 💭
Oxford, MS

I have been off of plaquenil for 7 months and my body is going haywire. My histial hernia in my chest cavity is now requiring surgery, I stay in the ER with heartattack symptoms but I am getting the hernia repaired, I hurt all over like I have the flu daily, I have swollen feel, and I am only on 5 mg of prednisone. I feel like I am just existing not living. HELP!!

August 10
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MyLupusTeam

What you're going through sounds absolutely exhausting, and it makes complete sense that you feel like you're just surviving right now. That's a lot to carry at once, and your feelings are completely valid.

Coming off Plaquenil after long-term use can cause lupus symptoms to flare significantly. Research shows that people Show Full Answer

What you're going through sounds absolutely exhausting, and it makes complete sense that you feel like you're just surviving right now. That's a lot to carry at once, and your feelings are completely valid.

Coming off Plaquenil after long-term use can cause lupus symptoms to flare significantly. Research shows that people who stop this medication are more likely to experience increased disease activity, which could explain why so much seems to be happening at once.

Hydroxychloroquine also stays in your system for about three months, so by now it has fully cleared — meaning your body is managing lupus without one of its key treatments. The most important step right now is an urgent conversation with your rheumatologist. Be very specific about everything — the migraines, the flu-like pain, the swelling, all of it. With Plaquenil no longer an option, there are other lupus medications that your doctor may consider to help get things back under control.

Some key points to bring to that appointment:

- The worsening migraines since stopping Plaquenil
- Daily flu-like pain and swollen feet
- Whether 5mg of prednisone is enough to manage your current symptoms
- Asking about alternative treatment options to replace Plaquenil

You deserve to do more than just exist. Please push hard for answers at your next appointment — you have every right to advocate for better quality of life.

August 10
A MyLupusTeam Member

sending healing prayers. I am so sad that you’re going to all of this. Get well soon please in the name of Jesus amen.💜

August 10
A MyLupusTeam Member

God bless you just remember your a warrior and a strong woman good luck

August 11
A MyLupusTeam Member

I had my hiatal hernia repaired recently, along with esophageal surgery. It definitely caused a lot of chest pain, and the GERD was eroding my teeth. It's been a year since the surgery, and the chest pain is definitely gone!

August 11
A MyLupusTeam Member

@A MyLupusTeam Member, that last sentence I felt to my core. I hope you find relief in another medication. If it has been 7 months, what are they waiting on before putting you on something different?

August 10

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