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[QUOTE=life_is_good;3572316]I'll jump in here with the little knowledge that I have on this. I can only relate with what I have. Hope I can help you sort some of this out.

Like you, I started out with low positive anti DS-DNA (lupus marker). I didn't go on any meds at that time. It took a few years, but I went to a very high positive. By the way, I also have the nucleolar pattern.

I do have the antiphospholipid antibody syndrome. Usually, it takes two positive tests to get the diagnosis, you were only tested once. That's usually treated with just baby aspirin, unless you've had a clotting event. I have had such an event (several, in fact), therefore I was put on Coumadin, a blood thinner.

As for the Plaquenil, I am on it. It has been a wonder drug for me in the following ways. It has COMPLETELY taken away my joint pain - and I had alot of it. However, you said that you don't have any achy joints. The other thing it has done for me is that it has lowered my DS-DNA (lupus) antibodies into a manageable range. Yours are low right now.

Honestly, I think it's ok to take the "wait and see" approach and see if your counts start to move. You can always start the plaquenil at a later time.
I hope this helps a bit.[/QUOTE]


Thanks so much for your insight--
If you don't mind me asking, were you diagnosed with antiphospholipid syndrome prior to your lupus diagnosis? Did you have clotting events before you knew you had the clotting antibodies? My first rheumatologist who said we could wait and see said that I should get bloodtests each couple months.

The second rheumatologist said I should be sure to see my other specialists as needed, but only to go back to him if something changed and I started to feel unwell. I am torn on what to do. I had read that some doctors believe Plaquenil can help with lupus skin rashes and also help to prevent kidney and other organ damage as well as prevent flares. And I know it doesn't start to work for several months. I also heard that it helps with preventing clotting events. So I'm wondering if it's a good idea to go on Plaquenil now, BEFORE my anti DS-DNA could rise. What I haven't been able to find in my research is what numbers of anti DS-DNA usually mean that a person will have physical symptoms.

m also wondering if steroid lotions can help clear up a potential lupus rash without systemic side effects. I will have several questions for my rheumatologist at the next appointment! So much to mull over. Did you ever have to go on Prednisone? If so, were you on Plaquenil at the same time?

By the way, you're the first person with lupus I have "met" who has the nucleolar pattern ANA. Seems we are a rare breed. ; )

Hope you are feeling well these days--





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