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lupussister posted:
I was diagnosed w/lupus over 10 yrs ago. I went to so many Drs. & everyone of them tested me only to tell me "well you test very high ANA". Over the yrs. I have always tested positive or high for this & about a yr. ago my Dr. said it was negative or really low. Is it possible for Lupus to go into remission? I've heard that it can. I do not have a Rhumotologist because their just are not any that will take a new patient. I did see a Rhumotoligist from Springfield,Mo. & he walked in,looked at me & said "I do not believe you have Lupus and never have had it". He had never met me before,knew nothing about me or my medical history. I never went back to that Dr. But it has shaken my faith in Doctors when it comes to my Lupus.
So the two questions that I have are.....Can Lupus go into a remission state and test low? And I have really BAD leg pains everyday & nothing helps except pain pills sometimes. Does anyone else have that issue & if so any reccomendations would great. Thank You.
gringa1 responded:
Hi there, I have lupus, fibro,epstein bar virus, vertigo and I just had a fellow up my my rhuematologist earlier this month and said mmy readings from my blood work was low and said my lupus is in remission and the pain and swelling I'm having is from my fibromyalgia. Now what I don't understand is why he has me still on hydroxychlor and put me on Lyrica at night and for me to continue taking Cymbalta during the day.
Now I'm still in pain from joints( toes) I wake swollen and I ask myself is this from fibro or is the lupus active.
My doctor put me on prednisone for a month, I didn't do well with that.
I would also love to hear from someone out there.
Lupylisa44 responded:
Hi lupussister!


Lupus is a disease of flares and remissions. So the anwer to your question is Yes, lupus can go into remission. There are a couple different kinds of remission. A true remission is when you are off all medication and have no disease activity. Then there is a medically controlled remission. That is when you are still taking meds and there is no disease activity. Are you on any medication to control your lupus?

Since there is no definitive test for lupus, doctors rely the 11 criteria for diagnosing lupus which includes certain blood tests like ANA comlement levels and Anti-dsDNA.

You really should have a doctor following your lupus. There is a rheumatologist finder at this website you can search your area for a new rheumy:

Many people with lupus also have secondary conditions like fibromyalgia, Sjogrens Syndrome, thyroid issues, Raynauds, and Restless leg syndrome. It is possible that you may have one or more of these secondary issues.

I hope this helps!

With love, with patience and with faith, we'll make our way.
Lupylisa44 replied to gringa1's response:
Hey Gringa!

How have you been?

- please see my answer to Lupussister about the different types of remission in lupus

Happy New Year!

With love, with patience and with faith, we'll make our way.
gringa1 replied to Lupylisa44's response:
Thank you so much Lupylisa, that does help, and I do have follow a up appt. with my rhuematologist. I will definitely look into those web sites.
Happy new Year

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