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Struggling with ongoing flare - need advice

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Posted 9/9/2018 9:03 PM (GMT 0)
Hi everyone,

I was diagnosed with Lupus at age 14 and I am 32 now. My flares usually last about a day or two. But recently I've been struggling with a flare that has lasted over a month. My hands are very swollen and painful. I also have been getting some swelling in my legs and feet and I've had some bad fevers. The doctor gave me prednisone (I normally just take plaquenil) and the steroids helped a lot but the flare didn't stop and he said he felt uncomfortable continuing to give me the steroids. So he increased my plaquenil dosage and gave me a stronger NSAID. But I am still experiencing the problems.

My questions:

1. Has anyone out there experienced something like this and what did you do?

2. The doctor said there are other drugs similar to plaquenil that I could take but they have more side effects (I can't remember the names of the drugs). Has anyone taken drugs other than plaquenil and did they help and how bad were the side effects?

3. Has anyone had improvement with their flares due to a change of diet (like cutting out gluten or sugar)?

Thanks in advance for your help!
Posted 9/14/2018 8:38 PM (GMT 0)
There aren't "other drugs similar to plaquenil" - it is known to inhibit disease progression and honestly we can't generally tell if it's doing anything unless we stop taking it and the disease gets worse. This is not recommended.

I suspect you meant "other drugs similar to prednisone" - this is the steroid often used to combat inflammation and thus indirectly treat pain. Medications such as Cellcept, Imuran, and MTX are used instead, they don't have the side effects on calcium (bones) and sugar (weight gain) that Prednisone has.

It is unknown why one of these 3 (Cellcept, Imuran, and MTX) help, and the only way to tell which one will help a specific person is to try it and see. I tried Imuran, no side effects but no help either. Then I tried Cellcept (again no side effects) which has been my miracle drug and changed life from one long flare into something almost equal to my pre-Lupus condition. I think MTX has the most side effects thus my choice to save it to last in case neither Cellcept or Imuran worked.

If your Dr really said "other drugs similar to Plaquenil", I would find a Dr more up-to-date on Lupus. I suggest checking with the Lupus Org at www.lupus.org to find your local chapter of the organization. Then check in with the local chapter to see which local Drs are active on the advisory board -- these are generally the Drs most interested in and most experienced with Lupus in your area.

Best wishes!
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