What does "High" mean really?: If I have antibodies... - LUPUS UK

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What does "High" mean really?

MotorCityGirl
MotorCityGirl

If I have antibodies flagged as "high" on a blood test which are associated with Sjogren's (Anti-SS-B), Polymyositis (Anti-Jo-1) and SLE (Ribosomal P), does that mean I have all three autoimmune diseases? I was originally confirmed with Lupus. I'm relatively new to all this & these labs were 1/7/21. There are other abnormalities but so far we're treating with Plaquenil which I've been on for about 3 wks. Are there degrees of "High" meaning you have more or less of the disease?

Thanks for the help!

11 Replies

Many AI illnesses overlap and it is possible to have more than 1 as many go hand in hand.i have 4 AI illnesses...hashimoto's (auto immune thyroiditis) which goes hand in hand with b12 deficiency anaemia ,lupus and lupus nephritis with secondary sjorgens. Hydroxchloroquine takes at least 8 weeks to start to work 6 months for full effect so be patient. Sending hugs 🤗 x

Thank you for replying so fast! I get what you're saying about the overlap, thanks. So, if you have a particular antibody do you have it have it or do you have to have "X" amount to say you have it for sure?

Its tricky to answer..... lupus for example has negative, weak positive and positive. a percentage of the population have a positive ANA test but have no ctd so they would look at your DS DNA result .results can also flit between positive and negative.in some cases biopsies are more of a definitive test . Others maybe able to help more sorry if I havent x

No, you're making sense. So if something has a normal range of 0.0-0.9 & your result is 1.9 maybe that's a weak positive if the positive can reach higher. I guess like everything else - it's all relative!!! I will need to ask my PA when I see her in April for follow up. Thank you so much 🙂

A lot of the autoimmune disease overlap . I’ve been on plaquenil for 14 years it’s a good drug. It can take 6 months before you feel the full benefit. Make sure you get regular eye checks with it

Thank you I will do the follow up!

Eye I meant as well as meds🙃

Sheesh - I meant eye follow up as well as meds follow up 😬

My former now retired rheumatologist explained it in a way that helped me. He said that we tend to look at all of these as separate diseases but instead we should see them on a spectrum where you lean towards one or two more strongly but still may have leanings toward others. More of a straight line than distinct separate diseases. It may or may not be technically correct but it made more sense. So regardless of how you look at it, you may have bits and pieces of several autoimmune diseases with one or more being more prominent. These test results help give your Physician’s direction.

MotorCityGirl
MotorCityGirl in reply to TwoH

That's good - I hope I won't need several more meds. Thank you for the explanation. Between "overlap" & "spectrum" I'm getting the picture & don't feel as anxious.

🙂

Hi there Motor city girlmy experience with Plaquenil hasn't been great, everyone is different. I was put on 400gm plaquinel for primary sjorgrens and after 6 months i asked to come off it due to the rashes and itching and not healing. Specialist hadn't seen it so bad, had to send photos as we were in lockdown, when i finally got to see him, it turns out i was given a generic form from local chemist. so watch what u get. I'm now on 200gm still itching so took a dose of

Flexo 180 a nondrowsy antihistamine and the itching has halved. stacking on weight too.

the hospital told 7 years ago dont eat anything out of a package

(i ignored that !) about to start Dr Brooke Goldners immune reset smoothie regime as i'm not getting better after nearly 2 yrs - safe from covid tho !!!

wishing you well and a halt to this yuck disease

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