Is it possible?

[Tisket]

Hello everybody

I wonder if anybody could help me. I have a burning question, and I thought I’d ask you guys first.

My question is this:

Is it possible to have all the symptoms of Lupus, and to have positive test results for Lupus (including ANA), but not actually *have* Lupus?

Thanks for any responses!

[whisperit]

Er....if you have all the symptoms of lupus and all the test results indicative of lupus - which bit of lupus would you *not* have?!

[Tisket in reply to whisperit]

My thoughts entirely.

I had Anti-ro, Anti-la and ANA blood tests several years ago and the results came back positive, and I had all the symptoms except for seizures, but it was decided that I should wait a few years. By chance, earlier this year I had a SSB test, among a batch of other blood tests, and it came back positive, but according to the doctor, the result just means I’m somebody with a low immune system...

Is it possible to have all the symptoms and test positive on multiple occasions, but not actually *have* Lupus?

[whisperit in reply to Tisket]

How bizarre - if not positively alarming. Not least because people with auto-immune disorders like lupus don't have "low" immune functioning. The problem is quite the opposite - our immune systems are too active and are attacking our own tissues. It sounds like your doctor is either incompetent or else really spectacularly bad at communicating with his (her?) patients! x

[Tisket in reply to whisperit]

Thank you for your reply whisperit

I expect you’re right about your theory. But, before I go and make a scene at my next appointment, is it possible that I could have Sjogren’s instead of Lupus, even if I don’t have all of the symptoms? And if so, how do medical practitioners know who has what? It all seems very confusing. And frustrating.

[whisperit in reply to Tisket]

Perhaps one way of dealing with it would be to take one of the LupusUK leaflets into your consultation. You could then - highlight some of the things that point to your having a systemic auto-immune disorder such as lupus or Sjogren's and ask (very politely of course!) how your medic would account for your symptoms. This is the one on symptoms and diagnosis, but, as you know, there are several others on the "Home" page. Good luck! x lupusuk.org.uk/wp-content/u...

[EOLHPC in reply to whisperit]

Hi whisperit: i agree, it’s unusual, but some of us do have sle + primary immunodeficiency (PID) ....when i was first diagnosed with PID several years ago, i was amazed to discover anyone could have SLE & PID ...more in my reply below to tisket 😘🍀

[EOLHPC in reply to Tisket]

Hello tisket & welcome to this wonderful forum...glad you found us

Whisperit has given you great advice

Am just replying now to add that Yes, it is possible, but unusual, to have both active SLE & a low immune function disease (usually aka bone marrow dysfunction) at the same time. I know because i have both infant onset SLE and early onset Primary Immunodeficiency (PID). Both were diagnosed before treatment with immosuppression meds began.

And i know i am not alone because i’m friends with other patients diagnosed with and in active treatment for both SLE autoimmune disease and a PID immunodeficiency disease (which is not due to immunosuppression meds) because i have met & become friends with several other patients like me.

also i know these 2 seemingly contradictory types of immune dysfunction illness can & do coexist in certain unusual patients because the rheumatology & immunology clinics i attend at my nhs university hospital confirm there are unusual patients with both types of immune dysfunction at one & the same time...and these patients can have sjogrens too, as i do

my type of bine marrow dysfunction PID is known as a Common Variable Immunodeficiency (CVID) and, more specifically, i am in care with immunology for the CVID characterised by hypogammaglobulinaemia G, A, M (below range immunoglobulins G,A,M) My rheumatology & immunology consultants liaise closely in my case.

If you’re interested in learning more about PIDs, PID UK is v helpful:

piduk.org/specificpidcondit...

Hope you’ll let us know how things go

🍀🍀🍀🍀 coco

[whisperit in reply to EOLHPC]

Thanks for explaining that, coco. x

[EOLHPC in reply to whisperit]

You’re welcome...it still seems bonkers to me...but there it is.

My feeling is that the fact these 2 types of immune dysfunction can coexist is yet another reason why we’re right to feel the health system needs to set up a specific speciality dept dedicated to both immune dysfunction & connective tissue disorders. 👍😘

[Bebe76 in reply to Tisket]

High ANA is present in some healthy people, but anti-Ro and LA are more specific for Sjogren's. Sjogren's can also cause fatigue and pain. Diagnosing exactly which autoimmune disease you have however is often not straightforward and you need to see a rheumatologist. They should diagnose on both symptoms and bloods. Good luck I hope you get answers soon.

[Wendy39]

Whisperit has given you a great reply. Your doctors stance is alarming to say the least. How many years have you waited to see what happens? Have you been on any meds? You must have struggled with all of this. Is this a GP or a Consultant? You need to push for a referral to a Lupus Centre of Excellence. Happy to help further. Let us know how it goes. PS I had positive ANA, ENA & Anti-RO back in 2013. My diagnosis are now SLE, mild reynauds and possible underlying sjogrens. Good luck. Wendy

[EOLHPC]

Wishing you every best wish...you’re v well informed which will mean you can collaborate effectively with your expert consultants. Am v much looking forward to more news from you as investigations proceed 😘🍀

[Chanpreet_Walia LUPUS UK]

Hi Tisket,

Have you considered requesting a second opinion from a different consultant? We published a blog article which has a section discussing how to obtain a second opinion after seeing a consultant: lupusuk.org.uk/getting-the-...

There are a few blood tests that are checked when diagnosing lupus. These are discussed in our free information pack. To download or request the pack please click here: lupusuk.org.uk/request-info... . You may also like to read our blog article about ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...

[Tisket]

Hello everybody

Thank you all for commenting, it made me feel much better and less crazy.

Since I posted my query I have been referred to a dermatologist to assess why my skin would be photosensitive, I’ll be having an artificial sun test at some point but apparently, that can take over a year to get. That test will determine whether or not I have lupus. Is this a common way to diagnosis?

In addition, it turns out I have 3 relatives with Lupus (I found this out recently), is there a genetic component?

Thanks for all your help and happy new year! x