hi guys I feel horrific I have been told my
Iron is low alongside that I’ve got sores in my nose pains in joints and chest I just wondered can you have normal bloods but still flare I don’t understand how I can feel so bad but they say my inflammation markers aren’t up?
Hi there,
You say,
“they say my inflammation markers aren’t up?”
Timescale is most important!
When you first noticed your flaring of symptoms did you/they increase your dosage?
Did you have your tests done before or after your MOST intense flaring. Inflammatory markers for AI diseases can come and go very quickly particularly skin manifestations of lupus, the red rashes!
Even stress can affect lupus sufferers in different ways!👆
Staff don’t get this.
In my case around 6/7 years ago, my DLE flared most horribly, red rashes all over my body. It happened days after my partner was diagnosed with terminal cancer.
Had to ring up emergency dermatology for dosage advice.
It was most scary. An increase in Prednisolone did the trick!👍 for me within a week.
Hence what I’m trying to say is that blood test results for inflammation markers will always have a delay between flare intensity suffered by the patient and ward based staff getting results back from the lab.
As others have said: photos, notes, diary of symptoms are most important during the intense flares.
Regards
I called because I’ve had pleurisy twice in the last few months and was getting same pain again but j couldn’t get seen for a week later I’m still waiting to be seen! I have my appointment on Tuesday I went to my gp to get bloods and they just said apart from being anemic my bloods are okay how can that be when I feel so poorly! I’m just hoping they will treat me next week
ans thank you for taking the time to reply and I hope you got threw the cancer with your partner I’m sorry to hear your sad news
hello, yes definitely you can be flaring and inflammatory markers normal. Not everyone has a typical acute phase response (that basically means some people just don’t have raised inflammatory markers like ESR etc when flaring).
I expect if they did more advanced blood tests and looked closely there will be something in your bloods that may show a flare for you but for some people you have to just from symptoms.
When you had pleurisy were your inflammatory markers raised? If not and you had pleurisy then that’s more evidence that you are one of those people who doesn’t produce a normal response to inflammation/ infection.
Dysfunctional immune systems like we get with lupus can make that even more likely. Then it’s really hard because it’s actually helpful to us to see our flares in our bloods or otherwise we think it’s not ‘real’ (and sometimes the doctors think that too) but you know how you’re feeling.
My infectious disease consultant told me to be more confident in what my body was telling me regardless of bloods (I used to get sepsis a lot because my bloods didn’t show infection - they do now but in different ways to a ‘normal’ person so my clotting factors etc go wonky rather than ESR or CRP).
So if you feel rubbish then go with that feeling regardless of bloods. But also bear in mind it can be an infection or something else too so keep an eye and get help in trying to decide if infection or flare as different treatment of course.
Hope you get some help and feel a lot better soon xx
honestly I feel like I’m going mad like you say we think it isn’t real but I had rashes sores in my nose and mouth and pain everywhere I feel so poorly, I’m seeing my rheumatologist on Tuesday and I’ve took pics of my sores and rashes so I’m hoping that he will give me something, Ah see I have my crp and esr checked because I’m on methotrexate injections ans they are always fine so frustrating! You totally right in being more confident in what your body is telling you there’s clearly something going on because my ferritin is really low and when I first got diagnosed with lupus that was one of my First pointers to it, it’s a very frustrating disease isn’t it, I really appreciate
You taking the time to answer me it means so much ans it’s really reassuring that it isn’t in my head!
no, it’s definitely not in your head but a common feeling when bloods don’t match. Visible signs like the rashes and ulcers always help the doctors though (even though they should just believe our non visible symptoms too like the pain etc)
Ferritin might be your marker of a flare so worth monitoring.
I have really unusual markers but everyone in hospital knows now and I have a care plan with it written that I don’t mount a typical acute phase response and not to use ESR or CRP for me but to measure clotting (my d dimer goes high in a flare and my blood clots quickly) and a cancer marker which goes up in a flare and some other things.
I think we all probably have some markers whether that’s ulcers in a certain place, low ferritin, fizzy legs etc, it’s just knowing that’s a flare in us and when to treat.
But if you had pleurisy and scans that showed it and didn’t have a raised ESR/ CRP then, then that’s medical evidence that you don’t produce that response so you ask to have it documented on your clinic letter so you can wave it at any doctor who tells you you can’t be infected/ flaring!
Sorry you have all those symptoms ☹️ Hope rheumy helps and it’s a fairly quick one xx
Have you been tapering from prednisone maybe in the last month? Having said that there are who know how many blood markers that are not measured but are driving symptoms. For example inflamatory cytokines. I know of one, IFN-1. But thay is never measured in regular labs. People still didnt figure out lupus so symptoms even without labs we currently track are the best indicator of the disease activity.
I haven’t been tapering off steriods, I haven’t been on them since my last bought of pleurisy I know I have took pictures of my rashes and I’ve got lymph nodes swollen in my check so that’s a pointer something isn’t right too!
You are also allowed to have more than one condition so you might be in a flare up or have somethi else going on
Yes you can flare without some marker showing everyone is different. I have flared many times onkg to be told I'm not showing to be flaring by my blood test. After several years of this one doctor noticed that my platelets fall dramatically when I flare every other test us normal so as the orgers havd said something will show your flare. Believe in your body. Hope it gies well with the doctor xxx
thank you so much for your reply, I
Know I’m flaring becuse i always get anemic I look half dead 💀 ! And the joints in my hands are swollen and red 
it’s sad that I’m happy they are like thst because it means I can show the drs and it’s something they can visibly see because otherwise it’s just my word thank you for replying and I’m hoping I get some relief on Tuesday xxx
Hi Sammymoat, sorry to hear of your troubles. The short answer is yes—you can definitely flare with normal bloods! I have the mouth and nose ulcers too, plus sores on my hands and feet, chronic joint pain etc., but my bloods usually come back normal ESR, CRP, etc. The lupus markers keep coming back positive though, so they just confirm I *still* have lupus. If ESR and CRP are up, it’s like a confirmation of a flare, but the absence of same does not necessarily indicate the absence of a flare. Hope that makes sense.
One of my markers tends to be low C4. The complements (C3 and C4) tend to get tested routinely in bloodwork, and I have noticed my C4 usually drops when I am flaring—but everything else usually looks normal! So maybe keep an eye on anything like that. Unfortunately, a lot of this detective work happens over a period of months and years of repeat bloodwork to see if a pattern emerges. Good luck! 👍🌈
just like you my bloods are always normal even when I’m unwell. My symptoms are intense fatigue and brain fog. Because of the blood results my consultant thinks it might not be a flare but Long Covid. I’m not convinced of that as I was ill before I caught Covid in March. But I appreciate it must be hard for the medics - after all, the test results are all they have to go on! I’ve had other investigations - scans etc - where I think my adrenal glands have been checked for inflammation and nothing untoward was found. So it’s up with the Prednisolone dose and fingers crossed they work. I’d rather it was a treatable flare than Long Covid.
I know I agree long covid sounds awful!! Well I’ve got obvious signs now of sores on my nose swollen red joints and swollen lymph nodes even in my armpits they are so sore! I feel so sorry for you having the brain fog and fatigue I feel like that aswell I hope you get better soon xxx
so just an update I’ve seen my rheumatologist and he did a scan on my joints and seen a rash on my back which I never even noticed, I’m in a full blown flare no wonder I’ve felt so poorly, but even said my inflammation markers have been fine but he said that can happen, so I’ve been given a kenalog injection and 5 days worth of oral steroids and had to increase everything else, I’m so glad I’ve been seen and it isn’t all in my head because sometimes you are made to feel that way aren’t we??!
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