Flare

[loober]

Hi

Has anyone had a flare, but not shown on blood tests ?

[Fennella02]

Oh yes. My inflammatory markers have always tended to be unremarkable which is, I think, due to the fluctuating nature. My CRP never rises anyway and ESR needs more sustained inflammation in order to rise. This last year, my ESR has started to stay elevated but this has only been picked up because my GP likes to do my ESR every month.

It's very frustrating but many on here will report the same. Hope you're soon feeling better x

[Wendy39]

Yes, lots of times, unfortunately!!! I was diagnosed in 2013. I have only ever had two positive ANA tests, in 2013 and last summer. For me, I have strongly felt that my Rheumy wasn't taking me seriously as a result. So I asked for a second opinion, on my diagnosis, treatment plan and how to deal with flares - as I had never been given advice or meds for flares. However some people have great doctors and despite no markers in their blood tests, they are treated on their symptoms alone, so it isn't an issue for them. Would you mind giving us a little more info so we can be more specific in our advice? Are you happy with your doctor and treatment plan? What symptoms are you experiencing with your flares? Best wishes, Wendy

[Shaysuekirk]

Yes. I'm in a current flare and all of my blood work was excellent aside from Vit D being a little low.

[Wendy39 in reply to Shaysuekirk]

OK. Is your doctor still offering advice and treatment for your flare, despite your blood tests?

[Shaysuekirk in reply to Wendy39]

Mine is... Yes. One course of steroids to start.

[loober]

Ive had lupus since 1992, but I also got fibromyalgia, under active thyroid, b12, my blood work as come back as satisfactory but I have a low hemogloblin, which I'm taking iron tablets for. My consultants always put it down to fibro and sometimes don't listen to me, I wanted to know how many people do have the same results.

Thanks for getting back to me

[Shaysuekirk in reply to loober]

Even if they want to call it Fibro, it should be a same or similar treatment. All of these autoimmune disorders are so ambiguous. My dr calls it whatever his "flavor of the week" happens to be. I don't really care as long as I am treated.

[Fennella02 in reply to Shaysuekirk]

Fibro flares would be treated differently from Lupus ones.

[Shelby1501 in reply to loober]

This is the problem I'm having at the moment. If my bloods are all ok, but I say I'm in pain can't move, tired beyond belief with all other symptoms of lupus they just say it's fibro !!! I'm now getting a second opinion. Good luck all

[Wendy39 in reply to Shelby1501]

I really hope your second opinion goes well. Is it with a lupus specialist? Wendy

[Shelby1501 in reply to Wendy39]

It's with a professor in rhemo from Southampton. He has done loads of case studies on lupus specificially so fingers crossed. Saw him at a lupus awareness day and he agreed to see me asap. Amazing he was

[Wendy39 in reply to Shelby1501]

That sounds very positive. If he is taking part in lupus awareness days then I would hope he'd be very qualified to help you. I'm thrilled for you and have everything crossed. Please let us know how you get on. There are good doctors out there, who are kind human beings. Restores your faith a bit doesn't it.

[loober]

They have also changed me from methoxrate to mycophenolate, but have taken me off them because of a low hemoglobin. Has anyone else had problems with this tablet.

[Wendy39 in reply to loober]

I've been on 3g a day of Mycophenolate Mofetil since last July and so far it seems my bloods have been OK but we are all different, what works for one, doesn't work for another. If you have concerns you should speak to your Rheumatologist or your GP.

[Fennella02 in reply to loober]

My HB and WBC are generally in my boots. They haven't stopped my DMARDS (mycophenolate) for it - quite the reverse in fact. They hope that the immunosuppression will allow them to rise when (and if) the inflammation comes under control.

Do you have visible signs of being in a flare or are you dependent on having the ear of a good rheumatologist?

[loober in reply to Fennella02]

I know I'm having a flare, I think we all do over time, I think that's why they changed my meds. But I don't like not being on nothing. But I have an emergency appointment to go and see my consultant, so hopefully they will sort me out now xx

[Joy_1]

Hi

I have UCTD, diagnosed in 2012. My inflammatory markers have always been in the 'normal' range even when I am flaring big time. The Rheumatologist has learned over time to listen to me rather than looking at a bit of paper with my blood test results on.

At the moment I am pulling together a 'CRP' spreadsheet. I have 5 years worth of data. I'm doing this because one person on the Forum a while ago said that when they hit a CRP of 3 they flare. And luckily for her this was spotted by her nurse.

So I feel its worth a look-see.

[KRutherford]

As you can see, lab markers are all over the map for SLE patients ( and UCTD), just like symptoms! I had one very high ANA titer early in the course of my lupus, which has come down markedly, though still elevated, since being treated. (common - which is why treatment can't be based on ANA. And why some people have problems if they move, have to see a new provider, and (s)he does new labs and questions your diagnoses, especially if you don't have other positive antibodies). My ESR and CRP have alway been within normal limits , not at all reflective of my flares. That is an interesting finding about the slight elevations in CRP Joy - I'll have to go back and scrutinize mine. My docs treat me per symptoms (visible and not) for flares. I have a treatment plan, meds, plenty of advice - but have to constantly tailor it all to the current situation.

Wendy, I'm sorry you don't have that support - can you switch providers to someone more supportive? I can't imagine not having access to prednisone, pain meds, sleeping meds for flares.

Loober - good luck getting more help- different providers?? It is always interesting and informative what other people on this site have to say about their conditions and treatments, so hopefully you will benefit too! There are alway people here who care.

[Wendy39 in reply to KRutherford]

Thank you for your reply. Mine has been an ongoing battle to get a second opinion from a lupus expert. I have posted here many times. I even went to my MP. I ended up seeing someone privately in April and my diagnosis has been amended from SCLE to SLE. I am awaiting the experts letter to get things moving forward locally. But I will continue to see private doctor. It's such a shame there isn't better to access to lupus specialists for us all, without a battle first. Best wishes.

[happytulip]

Yes, I've really been in a constant up and down flare since 2014. Only on rare occasions do my bloods indicate inflammation but fortunately I have a brilliant rheumatologist and Specialist Nurse. They actually listen to my symptoms and examine me before looking at my bloods. You can't really argue with hair loss, a deep red malar rash, an ECG and echo that shows pericarditis and swollen red joints. I have all of those symptoms and my bloods are usually normal.

Sometimes my ESR does get raised but nothing spectacular. I always think that it's weird how doctors can say, "I know you don't feel well but your bloods are normal, your ESR is within normal range. It's the higher end of normal but it's still normal." And then I want to reply, "yes doctor. My ESR is in the high end of normal but that is despite being on 20mg of Pred. I wonder what my inflammatory markers would be if I wasn't on steroids."

I have a lot of relations with auto-immune disease and all their blood work tends to be unimpressive too. I'm just lucky that I've found a team that believes my symptoms and actually examines me instead of just looking at a computer screen.

Oddly, when I once did get admitted to hospital in 2013 with symptoms of what I now recognise as a severe flare (this was before I got diagnosed and it was all put down to a migraine) I had really, really abnormal bloods with a neut count of 0.5 and WBC 1.2. And they sent me home!! Crazy!

[Poppyfields65]

Apart from the CRP AND ESR, does anyone have complements such as C3 and C4 tested? And if so do they normally tend to be abnormal?

[Fennella02 in reply to Poppyfields65]

Yes. Sometimes low, sometimes low side of normal.

[KRutherford]

Good thought - I've had low C3 on several occasions, low normal C4. Probably running it every 6 months while all my other labs are done more frequently. It was one of my abnormal labs that showed up a couple of years into the diagnoses process and met part of the diagnostic criteria. Also very low lymphocytes. It is psychologically reassuring to know that other people have normal inflammatory markers in spite of having LOTS of inflammation- since even though you can find that info in research, obviously there are docs who think they should go hand in hand.