New diagnosis of Probable SLE

[keelinrose]

I just joined this forum after a recent rheumatology appointment at a major university hospital in Washington, DC, where I met with a great rheumatologist after seeing other doctors with no success. He gave my diagnosis on a scale, saying that his speciality describes lupus using a spectrum kind of thing.. he said on a scale it starts with "Not lupus" or UCTD, then goes to "Possible Lupus", then up to "Probable Lupus" and finally to "Definite lupus" (which he said is the level that tends to have major organ involvement and damage), and he told me on that scale that I am "Probable Lupus". He put me on Plaquenil and wants me to follow up every 3-6 months for blood and urine tests.

My symptoms have been persistent mouth ulcers on the roof of my mouth, inside my cheeks, etc., terrible fatigue to the point I struggle to get out of bed most days, daily joint pain and random sharp pains everywhere especially knees which turn red, tingling in hands and feet, swollen and painful lymph nodes, Raynaud's in fingers and toes, and a redness across my cheeks and nose that comes when I'm exposed outdoors (I attached a picture because I'm not sure if it's a butterfly rash or not). I just generally feel like I have flu aches all the time too.

My ANA is 1:1280 but all other specific antibody tests were negative except a borderline anti cardiolipin for IgM. Therefore I am confused, am I still a lupus patient despite the other tests being negative? I am on medication now and my doctor told me "Probable SLE" and he will be monitoring me frequently like I mentioned. It's not "Definite SLE" because of no kidney or organ involvement (so far) so is this still a diagnosis of lupus because I'm only one step away from that? Or should I consider myself still undiagnosed? Sorry for the lengthiness and thanks for any help in advance <3

[EOLHPC]

Welcome keelinrose: am glad you found us.

Good questions!...many of us start our diagnosis & treatment process asking the same thing...and some of us remain seroneg even when we finally are positively diagnosed with SLE

These links take you to some good recent discussions here on this subject...i hope something in there helps:

healthunlocked.com/lupusuk/...

healthunlocked.com/lupusuk/...

healthunlocked.com/lupusuk/...

Am sure you’ll get more helpful replies.

Wishing you well...hoping you’ll keep us posted

🍀🍀🍀🍀 coco

[keelinrose in reply to EOLHPC]

Thank you so much for the info and links I will spend some time reading!

[EOLHPC in reply to keelinrose]

You’re v welcome...it is a lot of reading...so go easy...and of course there is more, eg the Lupus UK website has great info too, including a wonderful range of downloadable publications on all aspects of lupus inc diagnosis

The main thing is: you’re now officially in the diagnosis & treatment process...at it’s best, this is a collaboration between you & your medics. You’re job is to monitor your multisystem condition signs & symptoms + how these respond to the treatment plans your consultants trial you on. Then you report back to your medics on how you’re responding. Meanwhile your version of lupus etc is clarified. You’re in care at a great hospital...things will make more sense with time & experience 😘🍀

[keelinrose in reply to EOLHPC]

You’re right it’s somewhat overwhelming at first but I really want to learn as much as I can! I look forward to exploring more on this website, thanks so much again for your help and advice 😊

[Paul_Howard Partner LUPUS UK]

Hi keelinrose ,

Welcome to the LUPUS UK community forum. It is quite common for people to be diagnosed with something like 'probable lupus' or 'incomplete lupus', especially in the earlier days of their condition. This can happen in cases of lupus that are relatively more mild/moderate or where it develops gradually over time. I wouldn't necessarily agree that 'definite SLE' is equivalent to organ involvement, because not everyone with lupus does have these symptoms. You may develop further lupus autoantibodies in the future which could make your diagnosis more concrete, or you may not. The most important thing is that you are being monitored and offered treatment to help alleviate your symptoms. You can read a bit more about the diagnosis of lupus in our blog article here - lupusuk.org.uk/getting-diag...

We have a range of other blog articles covering various symptoms and topics (such as mouth ulcers, fatigue, light sensitivity etc.) which you might find helpful. You can find them all at lupusuk.org.uk/category/blog/

[keelinrose in reply to Paul_Howard]

Thank you for this info, I am totally new to this and it really helps! So to clarify, not all people with definite lupus will progress to major organ problems, but are diagnosed more definitively because of their specific autoantibodies other than ANA? Do you know by chance how long it takes on average for some people to have those specific autoantibodies like anti dsDNA appear positive in their tests? And do lupus symptoms ever tend to get worse as a sign that those autoantibodies may be developing and should be tested? Thank you again and I will check out your links!

[Paul_Howard Partner LUPUS UK in reply to keelinrose]

Hi keelinrose ,

You are right. Many people can have a confirmed diagnosis of SLE but will not have any organ involvement from their disease. The 11 criteria set out by the American College of Rheumatology are generally used to make this diagnosis and can be found in the blog article I shared with you.

I'm afraid I don't know how long on average it might take for anti-dsDNA to become positive. It is difficult because only around 40-80% of people with SLE (depending on sample used and testing technique) will have positive anti-dsDNA, many people will never have a positive result and in those cases a diagnosis is often made based on other criteria.

High-levels of autoantibodies such as anti-dsDNA do tend to be associated with more active disease. In particular, high anti-dsDNA is often linked with lupus nephritis. Lupus is complicated and unpredictable though, so in some people this may not be a helpful indicator of disease activity.

[Curly1430]

Hi keelinrose I’ve got nearly all same symptoms and I’ve been diagnosed with behcets the rash on ur face looks like what the call the butterfly rash this is a good site to be on, it’s good to compare symptoms and talk about our ailments x your curly

[leslieliesel]

I also had an ANA of 1:1280...pretty high,isn't it...I was DX'd last Fall with subcutate Lupus...not expected to involve my organs.(hopefully) "just" skin, joints and FATIGUE. I wish you the best..I also live in the US Massachusetts we have some great Drs here in the US!!

[shareasmile]

Hello keelinrose! This site will be a blessing to you as there are so many knowledgeable and helpful people here with lots of experiences and wisdom to share. Your symptoms and test results sound so very similar to mine. I started my journey almost 5 years ago with almost unbearable joint pain in my hands and feet. My first diagnosis was seronegative RA, which then changed to UCTD about 6 months ago when an ANA test came back strongly positive at 1:640. Like you, no other test was positive, so lupus is on the radar, but not fully confirmed. My rheumatologist is treating me for lupus saying that most of my symptoms trend that direction, but so far I've no organ involvement like you also. At this point, I am thankful that even without a definitive diagnosis, I am still getting treatment that has been so beneficial to my well-being. I'm glad you have found such a great rheumatologist. That will make your journey through this autoimmune world much easier to bear.

[NewEngland3]

Mainstream medicine doesn't accept the concept of reversal of illness in auto immune conditions ---while in conditions like diabetes type 2, hypertension it is finally accepted--we have all seen obese people loose weight, stop McDs and get off diabetes and high blood pressure meds...I wish I had tried to do things to try to reverse the illness when I was first dg 25 years ago---plenty of rest, no trauma-emotional/physical, no smoking or second hand smoke, more northern climates and vegan diet--there is no guarantee it can help but healthy lifestyle never hurt anyone....you can google around some people who have much improved on vegan diets with lupus....I wish the NIH actually did some real research on diet and auto-immune conditions.

From mainstream view--make sure you go every 3 months and ask for repeat antibodies-always check your urine---my ANA was first neg before it became pos(I had this doc telling me no way I have lupus---now 25 years later I have kidney involvement...)...antidsdna as well....sometimes symptoms appear before antibodies....