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Believe me, you don't want to take Prednisone if you don't have to. It works well, but it can cost you in the end with things like fractures due to osteoporosis and being immune compromised. I had 9 rib fractures! Ouch!

Fatigue and pain can be the symptoms of many autoimmune diseases such as Fibromyalgia and Chronic Fatigue. Just because you got a diagnosis of Lupus does not mean that you may not have a combination. For example, I have Lupus, Fibromyalgia, and Sjogren's. They have some similar symptoms, but different treatments. The Lupus gives me fatigue, joint pain, and aches. Fibromyalgia gives me muscle pain, sleep problems, interstitial cystitis, hypoglycemia, and fatigue. There is no blood test to indicate Fibromyalgia, but right now, it's causing me more problems than the Lupus.

So, if you talk to your doctor about your persistent symptoms, then perhaps he/she can determine if another autoimmune disease is causing them and can give you proper treatment. Or increase your medications or add anti- inflammatories as they see fit for your Lupus.

Also, certain things can make your Lupus flare. For me, stress and illness seems to be my triggers. I try to stay away from people who are ill, I use hand sanitizer, and wash my hands frequently. I took a stress reduction class that taught meditation to help me relax and keep my autonomic nervous system in balance. For some people, foods can trigger problems. You may have to learn which ones are bothersome. Mushrooms and alfalfa sprouts come to mind. Because of my hypoglycemia, I must have a special diet.

There are a lot of different ways to treat Lupus in combination with the medications prescribed. Getting good sleep, not over working, certain vitamins, mild exercise, etc. A lot of people use massage therapy, jetted tubs, and heating pads to help with the pain. Maybe I'm not telling you anything you don't know already, but if you try to be proactive in your own health, in combination with the medication, you will be much the better for it.
I hope that I have helped you.
Best Wishes that you will be feeling better soon,
[QUOTE=beatlebug;4621223]Your fibromyalgia isn't an autoimmune disease. It's a syndrome like irritable bowel syndrome. They rule everything else out before diagnosing the condition, and you must meet certain criteria to get the diagnosis. The pain with fibromyalgia is not caused by tissue inflammation. Fibromyalgia is thought to be more of a nerve condition. I have that yes, and need it treated. It cannot cause your interstitial cystitis and hypoglycemia, but the autoimmune disease can cause the ic, that's what that disease does, attacks your organs causing inflammation and organ failure. An autoimmune disease can turn deadly. I have bladder IC, and the plaquenil has actually been making it hurt less. I think it's hard to kick out of a flare even if your energy is getting better when your hurting, because pain makes you so drained. I'm not hurting much right now and really am not feeling too bad at the moment.. No, I am not tiny, maybe average size.[/QUOTE]

Beatlebug, I beg to differ with your assumption. Fibromyalgia's causes may be different, and theories are many, but one cause can be from an autoimmune source. One theory involves an abnormality in the autonomic nervous system. But, what attacks this system could definitely be from an autoimmune source. If my facts are correct, 40% of people with Lupus also have Fibromyalgia, and that is a definite link to an autoimmune disease. I have a cousin who has both diseases, too. My FMS also flares with stress and illness, just like an autoimmune disease. So, I would assume that FMS, in my case, is autoimmune - based. Granted, there is no muscle inflammation with Fibro, but there is eye inflammation (irisitis) and bladder inflammation (IC) associated with the syndrome. IC [I]can[/I] be associated with both FMS and Lupus- at least the literature states this as well as many people on the health boards (real life). Of course, there is an overlap of similar symptoms with FMS and Lupus and other autoimmune diseases, so sometimes its hard to tweeze out which symptoms come from which disease. And, perhaps the inflammation can be from Lupus, but the extra pain sensitivity can be from FMS.

Now, back to your problem. I merely suggested that you may have another problem besides Lupus that may have been missed and is not being treated. It would only be prudent for your doctor to be thorough in this respect. I have taken Plaquenil off and on for nearly thirty years, and like the other poster stated, generally it is prescribed 200mg two to three times a day initially because it takes awhile to build up in your system. Then, it is tapered down according to your disease activity and symptoms. I'm sure your doctor cautioned you about getting an eye exam from an ophthalmologist every six months or so to check for side effects related to irreversible vision problems as long as you are taking Plaquenil.

If the current dose you are taking is not being effective, then either it most likely hasn't been long enough, your dosage may need to be adjusted, or you many need some other medications to help you while you wait for the Plaquenil to kick in. Your doctor would be the best one to consult about this.

Living with Lupus and other autoimmune diseases is very hard. Like the one poster said, "Don't give up hope." If you do, then everything will seem much worse. I hope you get some relief soon.
Best Wishes,

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