ANA test follow up results - anyone else experience this

@saw2019 I would love to help you out and answer your question, but my doc never did ANA levels at all! But you’re certainly in the right place to get answers.

Grrr! @saw2019 What a coincidence! I just typed a long message and my network crashed.
I saw a new rheumatologist yesterday and am doing the same. Blood tests are inconclusive, but history and symptoms say inflammatory arthritis (there are over 100 kinds). We are doing a prednisone trial to show that I respond; this will prove there is an inflammatoryprocess at work. In 5 weeks we will figure out a treatment plan, whether or not additional bloodwork "proves" RA. He said about 20% of people are sero-negative, but symptom positive.
I look forward to hearing how you progress. I'll share my details after my next visit at the end of July.
PS I have had osteoarthritis for over 40 year that has resulted in numerous surgeries and a lot of therapy, as well as fibromyalgia for 35 years, managed recently by a pain management program, and signs of RA for 20 years - repeatedly dismissed because I am sero-negative - it doesn't show on blood tests.

@saw2019
I have had several abnormal ANA tests but not diagnosed with anything and not treated. My ratio was around yours (maybe a little lower) and speckled.

You may want another opinion before starting prednisone. Prednisone can cause issues on its own (even my cat was prescribed prednisone for something and hasn’t been the same…it seems to have negatively affected his front paws where they have become deformed).

Here is what AI says about prednisone risk:
“ Prednisone is a corticosteroid medication commonly used to treat a variety of conditions, including inflammation, autoimmune disorders, and allergies. While it can be effective, it also carries several risks and potential side effects, especially with long-term use. Here are some of the key risks associated with taking prednisone:
Increased Infection Risk: Prednisone suppresses the immune system, making individuals more susceptible to infections.
Weight Gain: Many people experience increased appetite and weight gain while taking prednisone, which can lead to obesity and related health issues.
Osteoporosis: Long-term use can lead to bone density loss, increasing the risk of fractures and osteoporosis.
Gastrointestinal Issues: Prednisone can cause stomach irritation, ulcers, and gastrointestinal bleeding, especially when taken without food.
Mood Changes: Some individuals may experience mood swings, anxiety, depression, or other psychological effects.
High Blood Sugar: Prednisone can raise blood sugar levels, which may be a concern for individuals with diabetes or those at risk for diabetes.
Hypertension: It can lead to increased blood pressure, which may require monitoring and management.
Cushing's Syndrome: Prolonged use can lead to symptoms of Cushing's syndrome, including a rounded face, increased fat around the neck, and thinning skin.
Adrenal Suppression: Long-term use can suppress the body's natural production of corticosteroids, leading to adrenal insufficiency if the medication is suddenly stopped.
Eye Problems: There is an increased risk of cataracts and glaucoma with long-term use of prednisone.
Skin Changes: Prednisone can cause thinning of the skin, easy bruising, and delayed wound healing.
It's important for individuals taking prednisone to be closely monitored by a healthcare provider, especially if they are on long-term therapy. Adjustments to dosage, lifestyle changes, and preventive measures can help mitigate some of these risks. Always consult a healthcare professional before making any changes to medication or treatment plans.”

Thank you for sharing! Thinking about you during all this, and I will watch for an update from you!

Well ladies, add me to the group of ANA anomalies.

I’m 61, I’ve been on prednisone for 21 years due to interstitial lung disease, which doctors have wrongly never attached to an autoimmune disease.

My RF factor is always negative, so I got an OA, Fibromyalgia label, and was eventually prescribed Lyrica and Celebrex, which work very well.

Two years ago a new rheumatologist added a dx of ‘inflammatory arthritis’. She favored Orencia or Actemra.

I had my heart set on Xeljanz, and with the help of a concierge primary, she eventually prescribed it, calling my deformed hands evidence of seronegative RA (finally!).

Xeljanz worked like a charm. I felt normal for the first time in 40 years! Then I got a mild case of cellulitis on my right hand with a 90 CRP. I was hospitalized for 3 days because they couldn’t dx it.

Due to poor follow-up it turned into a staph infection three weeks later. My right hand ring finger tendon snapped and required surgery. Antibiotics caused C-Diff all last summer. My hand took 6 months (with therapy) to recover to 80% and I may sue the surgeon she recommended.

I got a new rheumatologist who ran ANA and ANCA. Results showed positive with speckled pattern. She said, “I think you have Lupus, and probably multiple autoimmune disorders (including Scleroderma). Have you taken prednisone other than for your lungs? And let’s try Plaqenil and Orencia”.

I nearly lost it! I’ve spent 21 years tapering to lower prednisone use - and it is awful!!! It works, but the side effects are horrible! Short term and long term. And too long to list! It ruined my life, but apparently it was treating my multiple problems.

After two visits she left the organization, and mow I have to meet with my 8th rheumatologist (two different cities).

Rheumatologist appear to tell everyone the same thing, and put them all on the same meds. It’s exhausting. Those might have worked 30 years ago!

If either of you have any luck with this, or have questions I might be able to answer, please reach out. I’ll check back, too.

I’m sending hugs your way! Take care.

@saw2019
P.S. When I had my eye and lip swell one time (never had this happen before), I had a nurse practitioner prescribe me prednisone in case I was having an allergic reaction to something. I took it for 2 days and felt like a zombie (couldn’t get off couch and extremely fatigued). I stopped taking it after 2 days and my face erupted in an extremely painful rash. It was like my body was attacking itself and this was only after 2 days on prednisone! It seems to have suppressed my immune system and then when I stopped taking it, my immune system went into overdrive. I’m not sure if this triggered my body to continue to attack itself because I was later diagnosed with Hashimoto’s thyroiditis (took a while to get properly diagnosed even though I had TPO antibodies show up in my bloodwork).

Yes! When I first went to the doctor in 2022 because I was sick, I was referred to an RA specialist. I DO NOT HAVE RA. It turns out it is Long COVID. Look into this. It mimics symptoms of so many autoimmune disease. My ANA titer was similar to yours. It changed a year later in 2023. My suggestion is to look into Long COVID. There is a support page on this site. You may recognize yourself or you may not. Hang in there!

My doctors, apparently, have been doing ANA blood tests without telling me. I just found out last week (!) Most recent ANA 1:184 (not alarming given I'm 71, but the one before was ANA 0); speckled (which nobody can tell me what that means) and negative RA factor. So here I sit with my good looks and education, angry with my doctors for running tests unbeknownst to me and not discussing them with me. I have OA - kind of everywhere; and ITP (immune thrombocytopenia purpura - low platelets). I hope you all get answers and some relief!

I am in the same boat. I have a moderately positive ANA 1:180 with both speckled and homogenous patterns. I have been experiencing symptoms of random fevers, joint and muscle pain, dry mouth, dry eyes, fatigue and malar rash for 15 plus years. Only recently has any doctor taken me seriously. So I requested n autoimmune workout. The only positive result was my ANA.

My PCP referred me to a rheumatologist who proceeded to tell me she didn’t see anything “ rheumatolgoically” wrong with me despite the fact my joint were swollen, painful and inflamed at my appointment along with a blazing malar rash. Despite all that she did start me on gabapentin for the pain and turmeric for inflammation.

My PCP doesn’t quite agree with only using the turmeric for inflammation and thinks I should be on plaquenil but she is going along with the recs of the rheumatologist. I have a follow up with rheumatology next month. In the meantime I have been tracking my symptoms and taking pictures of rashes to show the doctor.

I do know that autoimmune diseases are a diagnosis of exclusion as frustrating as that is. Especially if one has been having symptoms for an extended period of time.

Hang in there. You re not alone,

There are also autoimmune markers in our blood that show inflammation