Ana positive

Posted by brooke @bhoudeshell, Mar 28 11:59am

Hi everyone,
I tested low positive for ana with nuclear speckled pattern , positive ana ifa, high ch50, low c4c, low c1q, normal c3, prolonged ptt. Anyone have any ideas what this could be or the next steps I should take?

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jeannef2025 | @jeannef2025 | Mar 29 11:00am

Do you see a rheumatologist? That's the best person to answer and the best next step.

brooke | @bhoudeshell | Mar 29 1:16pm

In reply to @jeannef2025 "Do you see a rheumatologist? That's the best person to answer and the best next step." + (show)

Yes but he won’t listen to me and my symptoms

seniormed | @seniormed | Mar 29 4:04pm

With indications of autoimmunity they should be looking harder at your diagnosis. Did they run your
anti inflammatory markers as well?
Have you had anti lipoprotein antibodies ,lupus anti coagulant and more coagulation studies done? What about another rheumatologist!

brooke | @bhoudeshell | Mar 29 5:05pm

In reply to @seniormed "With indications of autoimmunity they should be looking harder at your diagnosis. Did they run your..." + (show)

I have a high ptt-la but normal lupus anticoagulant. I tried scheduling with a new rheumatologist and they told me no because I already have one

jeannef2025 | @jeannef2025 | Mar 29 5:26pm

In reply to @bhoudeshell "Yes but he won’t listen to me and my symptoms" + (show)

Symptoms?

brooke | @bhoudeshell | Mar 29 11:17pm

In reply to @jeannef2025 "Symptoms?" + (show)

Joint/muscle pain and stiffness and swelling, bruising, easy bleeding, extreme fatigue, rashes in heat/sun, hives, tremors, hands and feet tingle and go numb, stomach problems, etc

brooke | @bhoudeshell | Mar 29 11:19pm

In reply to @jeannef2025 "Symptoms?" + (show)

I also get sick a lot - I even had mono twice this year and have gained 8 new drug allergies in the past 2 yrs and i am negative for all allergy testing. Very random

jeannef2025 | @jeannef2025 | Mar 30 8:39am

(disclaimer: I am not a doctor or medical professional...I just research a lot)

Lots of autoimmune diseases can cause some of those symptoms, and many AI are extremely difficult to dx. However, Lupus seems to be the one with most of your bloodwork and symptoms. Do you get a butterfly rash on your face?

What was your ANA #?
On the ANA IFA, did any of the listed antibodies show positive?
Have you had CBC, CMP bloodwork? How do those look?

If your current rheumatologist won't take you seriously, ask for a second opinion. As a comparison, in July 2021, when my liver numbers and ANA were only slightly elevated and I was having joint pain, my primary doctor immediately sent me to a rheumatologist and a hepatologist (liver specialist). Both ran a battery of blood tests. After a liver biopsy that Dec, I was dx with autoimmune hepatitis. In Jan 2024, after being tested and retested for 3 years, I was dx with Sjogren's, but only by a lip biopsy as I never developed antibodies. Over those years, I'd asked lots of questions, insisted on bloodwork (including an Early Sjogren's Panel, which my rheumy doesn't normally use, but which came back 3 of 6 positives), and basically made a pest of myself until I got answers.

You have to advocate for yourself and don't take no or I don't know for an answer.

brooke | @bhoudeshell | Mar 30 2:40pm

In reply to @jeannef2025 "(disclaimer: I am not a doctor or medical professional...I just research a lot) Lots of autoimmune..." + (show)

Okay I got an urgent appt with my rheumatologist tomorrow so I will see what he says. I will attach my ana ifa just says positive. My ana titer says 1:40 with a nuclear speckled pattern. I get a red rash on my cheeks and chest when I am in the sun/heat for even a second but it doesn’t go over the bridge of my nose. Cbc and cmp is pretty normal. Mildy anemic