Not knowing what's going on.

[Emilyanne2]

Hi I've had lupus since 2014 and I was positive and had lots of symptoms but as time went on my rheumatologist said yes you have lupus no you don't it is very confusing. I started of with underactive thyroid then vitamin D deficiency,reynard,osteoarthritis muscle and tendon weakness,copd,asthma and sticky blood and glucoma. So I am none the wiser as to whats going on. Any advice please

[MusicalFurbaby]

Hi Emilyanne2, sounds like you have a lot going on. Many of your symptoms certainly sound lupusy; unfortunately, these symptoms also overlap with a lot of other autoimmune diseases. That’s why many rheumatologists are reluctant to diagnose lupus. It’s not that they don’t believe you or can’t see your symptoms; it’s often that there is uncertainty as to whether lupus is the label of best fit.

Most rheumys will run repeat bloodwork over a long period of time to see what changes, and also to rule out false positives in the bloodwork. Has your rheumy run repeat bloods?

My original rheumy refused to diagnose me with lupus, even though there were plenty of positive bloods and symptoms present that pointed toward lupus. I (eventually) sought a second opinion from a rheumy/immunologist, who repeated all the bloodwork. That’s when I finally got a diagnosis of lupus. But it took me eight years to get there.

If your rheumy has run repeat bloodwork and still won’t give you a diagnosis, my suggestion would be to seek a second opinion if you can. Good luck—let us know how it all turns out! 🌻🌈

[StriatedCaracara]

I have lots of symptoms, but of the blood tests done only ANA is strong and positive.

The 2019 EULAR / ACR SLE Classification Criteria intended only for research are now being used by some to say whether or not people have lupus. It requires a score of10 points.

A positive ANA is required and then only one symptom can be scored on left side of table linked below, only lupus nephritis gives 10.

So unless the person has lupus nephritis then need to make you say 4 points from positive bloods on the right side

ncbi.nlm.nih.gov/core/lw/2....

No longer do they seem to look for more than 4 of 11 symptoms even though it says all over the Internet that they do.

A lot depends then on patients being able to get lots of repeat tests done.

My UCTD diagnosis means I still get the same treatment. Many say I have lupus when they read it..I think they understand that the 2019 classification criteria have limitations, as do current tests.

Below is related post on Dr Donald Thomas talk on new tests being available that are better, but not in use yet. Maybe in a few years..

healthunlocked.com/lupusuk/...

[Mimi1900]

what medications do you take - hopefully at least hydroxychloroquine which all Lupus patients ts should take, try your best to tolerate as it is the foundational medicine for Lupus and your best chance of controlling your illness. Typically for your « sticky blood » by which I think your mean elevated cardiolipins/phospholipids shown as present by blood tests done twice at least 6 weeks apart without history of clot patients ts are typically advised by rheumatologists to take a daily aspirin of 81mgs a day as a preventive for clot. If you have had a clot they prescribe blood thinners in order to prevent a another life threatening one