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Lupus
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Posted 12/30/2016 1:02 PM (GMT -5)
Hi, please can someone give me some advice.
I am 24 living in South Africa.
Here is the full story:


Feb: diagnosed with bipolar
March - April : tried different psych meds
May: started on lithium
June: joint pains start &fatigue (I now realize that these were minor joint pains)
July: blood tests for autoimmune (RA in family) - all I was told was 'weak positive' by the GP

July: psych doc refers me to physician 1 - physician 1 suspects lupus - prescribes arcoxia and sends me to rheum. (Arcoxia works well) blue / red finger tips at this point.

August: see rheum - says lupus but doesn't explain anything - cortisone injection and plasmoquine. Decide to get a second opinion.

Sept: see another physician who is not sure about lupus - keeps me on plasmoquine and Celebrex. Urine tests show uti and increased leukocytes even when there is no infection.(every urine test says this over 3 months) Joint pain subsides slightly.
CRP high, tests suggest UTDC. Hair falling out

October: decide to go off lithium to rule that out for cause. No change once I am off. Only on lamicitan and trepiline now.

November: physician 2 tells me to go off plasmoquine - I think experimentally? (glad - don't want to be on Meds if no reason) joints still painful but not as tired. Missed period

I am fine - mild joint pain and no fatigue for -+3 weeks. But many mouth ulcers

December - stomach upset; very sore joints; butterfly rash - but only after shower or heat; hair loss; missed periods (2);
Very sore throat - no other cold/flu symptoms. Got anti biotics from useless GP but no change in threat after 3days (today)

Terrible headaches throughout the year.

Do I start the plasmoquine again before speaking to the doc? Doc is back on 3 Jan so I can call him then.

This may sound very weird - but I want to get bloods done while I feel so terrible to see if this is actually lupus. Therefore I don't want to start plasmoquine before bloods but I am going on holiday and don't feel like being sick the whole time.

My Psychiayrist is a lot more concerned about this than my physician and that doesn't make me feel very good. I just want an answer. sad how can I feel so sore if my bloods don't reflect it. Am I making this up?sad

No idea where to go from here. Any advice or ideas would be great! Thanks so much.
Posted 12/30/2016 1:26 PM (GMT -5)
Your Arcoxia is not approved for use in the USA, it looks like it's to manage pain and inflammation?

It looks like your Plasmoquine is similar to our Plaquenil, an anti-malarial which is know to inhibit disease progression for Lupus. It takes 2-3 months to really start working, and generally we stay on it for years. If you are feeling worse after discontinuing it I would certainly consider restarting it. It doesn't generally have side effects or interactions, so I would go ahead & start -- or Jan 3rd is close, so waiting is also a valid option.

In general, these meds don't affect blood work very rapidly. And please note, Lupus is NOT diagnosed by blood work, but by having at 4 of 11 symptoms. Blood is only one factor to consider.

Typically, four or more of the following criteria must be present to make a diagnosis of systemic lupus.

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.


You say, How can I feel so sore if my bloods don't reflect it. Am I making this up?

Auto-immune diseases like Lupus result in over-active immune systems, where the immune system randomly attacks normally function body functions. Our blood work doesn't really show this, although it may show increased inflammation, where inflammation is the result of the war going on inside. This is why Lupus is known as the disease of 10,000 faces, because it may attack differently in each person. This is also why it is so terribly difficult to diagnose, and why diagnosis often takes quite a long time -- because it never looks the same twice.

You are certainly NOT crazy - although that is a very common question asked by many of us as we start to experience some of these seemingly crazy and random symptoms.

Is the physician who took you off plasmoquine also a rheumy? I guess I'd go to the rheumy who I trusted the most, and follow what they suggest. Ir often takes trial and error to determine what the diagnosis is and how best to treat it.

Good luck, and let us know of your further questions.
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