hiya, so a few years ago when i was 13 i was told due to my high aptt and anxiety that wasn’t reacting to any medications that i might have lupus, they did the test and it came back negative, yet in the last year i’ve had recurrent mouth ulcers, chronic pelvic pain, impetigo, Livedo reticularis, cold shivers especially at night, a poor immune system (i’ve had the flu 3 times in less than 3 months), flu symptoms, poor circulation, recurrent uti’s, weakness and fatigue.
i went to the gp again and they did a full blood count and lupus test, my aptt is still high and she said the result came back unclear yet likely not.
i feel so bad that i’ve wasted people’s time or that they’ll think i’m just being anxious and that’s why, yet i truly feel so unwell and just wish for answers.
is there any way this could still be lupus or is there any conditions which are similar?
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You did not waste anyone's time and it is important to never avoid medical help for fear of how a doctor might think of you.
Keep investigating and ask your doctor, if they decide it is not yet lupus, what they think might be causing your symptoms.
My daughter, now 13, has had LR since she was one month old. Our pediatrician, after ruling out sinister causes like blood infection or early onset autoimmune, told us that idiopathic and benign LR is very common in young light skin children and mostly can be irrelevant.
You mention anxiety twice in this post. Do you generally suffer from generalized anxiety? If so treating this is very important. I believe it can even prevent lupus from developing if treated early. This belief is being supported by early results on treating PTSD soldiers to prevent them from developing full onset lupus later.
I waited until my late 40s to finally accept help for my anxiety. I wish I had gotten help sooner for I believe if I had treated my mental health properly I could have avoid Having lupus at 27 and a stroke under 50. Even if I could not have avoided this disease I could have enjoyed my life 100% more had I not been plagued by the disabling illness, anxiety is.
A year after seeing a doctor to treat my anxiety I have no more symptoms of lupus and my high positive antibodies have turned negative! Yes it could be coincidental. But regardless, I feel great and I finally enjoy today instead of worrying about tomorrow.
Keep searching for answers but also consider in the meantime looking into anxiety treatment if your doctors do believe you might have it. Anxiety is linked to lowering immunities, increasing inflamation, blood abnormalities, skin rashes, heart disease, stroke and a whole host of other body symptoms. It is a illness as serious and disabling as lupus but like lupus it can be treated if you do have it.
Anxiety and depression are precursors to lupus by over 10 years in multiple studies so although not yet proven it might just be a matter of time before anxiety is deemed a causative factor of autoimmune disease.
Good luck finding treatments that give you a healthy life back. And again never be afraid you are wasting a doctor's time. Keep searching until you feel you receive a valid reason.
You need to be tested for lupus anticoagulant. This will prolong your aPTT. It can be associated with lupus or a sign of primary antiphospholipid syndrome. I was ANA negative initially. All signs pointed toward APS. I had no clots anywhere so not APS. ANA did turn positive when extremely symptomatic. Diagnosed with SLE with low complement c3/c4, low lymphocytes, nose ulcers, pericarditis, malar, photosensitivity, tendinitis. The whole shebang. I also got infections pretty easily, esp viral. You should see a rheumatologist at least for the livedo and hematologist for prolonged PTT. Prolonged PTT without bleeding issues should be worked up. They need to test for factor deficiencies, inhibitors and as mentioned above, lupus anticoagulant. Surprised it wasn’t tested as a reflex lab.
If you have a prolonged clotting time in the test tube, funnily enough it means the antibodies can do the opposite in the actual body and cause a tendency for a hyper coaguable state which can lead to clot formation.
It does not mean that you will form a clot, it just means that in the right combination of circumstances you are more likely to, and in the meantime you may feel very poorly.
In the meantime it is advisable to stay well hydrated.
I would definitely ask your doctor to look very closely at the APS panel and see about protecting you.
That’s a fairly pronounced livedo.
I myself have APS
I am on warfarin, and Rituximab.
I will be happy to answer any questions you might have by Private message.
I can help you get a list of questions together for your doctor.
No, a d-dimer blood test could indicate the presence of the fibrin “ cycle” ( put in simplistic terms for ease of understanding)- a way to see if you are might be forming a clot and the resolving it-a spider web kind of material called fibrin is involved in the clotting process- it sort of holds a clot together, then during the resolution of the clot , ( your body breaking it down, reabsorbing it...) the d- dimer count does down.
Unless you have an active clot, suspicion of an active clot, or resolving active clot, a dimer would not usually be drawn.
At least this has been my experience as a very prolific clotter.
I’m doing much better. The combo of low dose steroids , Rituximab , and a little higher INR seems to be a good option for me. ( hoping the Rituximab might allow me to lower the INR.)
My antibodies seem to have a high affinity.
My Rheumatoligist in London said it can the fourth one to start seeing a result. Apparently this has been the case with me.
I haven t had a DVT in in 14 months! Yay me!
Migraines are my only issue but they are better for the most part with pred. ( trying to figure out how to get rid of steroids also if we can.) Rituximab is helping to lessen the need. ( but not eliminating.)
i think that’s the blood result that came back negative today, my gp said although the blood people there were happy, she wants to follow it up and see if i can get a referral there, it seems so weird like how you can have so many symptoms and it be negative? like idk x
I’d still ask GP for referral to hematology. A persistently high aPTT is nothing to shrug off especially if you have weird symptoms. Keep a journal of symptoms and take pictures (the one above is pretty marked). Beyond APS, you could have an acquired inhibitor which can increase risk for bleeding. All things must be ruled out. A GP will not understand/know this. I would really ask for hematology referral.
will do, thank you for your help! i think they said one of my clotting factors means my blood doesn’t clot very well, yet like you said that and all these symptoms is concerning, ill get an appointment this week x thank you x
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