Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
I had been sick for about 15 years and had been misdiagnosed. I had known for some time that it most likely was lupus but my rhumey at the time kept telling me it was either my weight or all in my head. About 4 months ago I finally got a diagnosis of lupus and now my muscles, kidneys, and skin is involved. I have mild to moderate kidney damage and horrific muscle spasms. I also get migraines and I have Raynauds. My doctor put me on 200 mg of plaquenil twice a day. The first week I had nausea and it went away. In the last week I have had horrible fatigue and a low grade headache. I've been told this too shall pass, but my question is how long should I give it? And, I'd be interested to hear y'all's experiences with plaquinil.
Plaquenil takes at least 6 months to work because it needs to accumulate in the body sufficiently to exert its effects. If you have kidney involvement, Plaquenil is not enough, especially when you also have muscles and skin involvement. You would need an immunosuppressant e.g Prednisone, or mycophenolate etc.. to start, Timely treatment may reverse your kidney impairment, if the renal damage is not too extensive.
Muscles, skin & kidneys involvement as well as fatigue and headaches are typical symptoms of lupus flaring. In addition to taking the above drugs, there are non-pharmacological therapies that you can try to prevent flaring and improve your general fitness such as moderate exercise, wearing sunblock to avoid UV light exposure that triggers flaring. Plaquenil can also cause photosensivity reactions if you are exposed to the sun. With migraines, you can take a mild analgesic for the headache. With the Raynauds, wear warm gloves in your hands, or dip your hands in warm water to keep the blood flowing and reduce the pain. With Raynauds, the pain becomes intensive that it may prevent you from using your hands for e.g typing, writing, holding a book etc...
You can look up the website for the lupus foundation of America, and it will discuss further more on preventive measures to avoid flaring. Hope that will help, and I pray that you will recover soon ! Take care, Marie