Bloods

[Loopyloo43]

Do you have bloods that are normal when having a flare? My rheamy seems to be dictated by this so am left without answers and treatment so struggle each time.he has recently joined the hospital from else wear but I truly believe he has no clue with regards to treating me. And he puts emphasis on my age and that it’s prob normal am 58 so is this it and that we should all accept the issues we get to make there jobs easier I have SLE Addison’s sjogrens hyperthiroid osteoarthritis rheumatoid arthritis tia !

[eekt]

Great to have you posting Loopyloo! You're right, he has no clue. The BSR Guideline - academic.oup.com/rheumatolo... - dictates the systematic process for monitoring and treating SLE (tables 6 and 7), so print those off and send them with a letter asking for a competent rheumatologist to review you pronto, and copy in the hospital's Chief Medical Officer.

Bloods are just a part of the picture, and they need to look at all your conditions to decide on the most appropriate treatment, which you most definitively should have - Hydroxychloroquine is usually the baseline for SLE.

So sorry you've been left in the lurch, but keep posting...you'll find many in the same boat! Be well! xxx

[Manclady61]

Hi I have recently had confirmation that my bloods are in fact normal when I’m having a flare, discovered by having a scan of my hands which showed massive amounts of fluid in my joints and muscles, I have been telling the various rheumys that I see for a long time that I’m in a flare and they didn’t believe me 😡, so I know how you feel and my rheumy said it does make it more difficult to treat but not impossible, eekt is right you should be on hydroxychloroquine, they have increased mine to two tablets a day now to try and get my sle under control, I’m so sorry your having a hard time as if life isn’t hard enough for us, keep going though and I do so hope you get the treatment you need.

Take care and be well x

Manclady61

[misty14]

Hi Loopylou

Sorry to read of all your health problems and difficulties getting recognition from your Rheumy!. I understand this very well as my bloods don't change in a flare and my Rheumy goes by blood resukts so I don't always get understanding from him!.Makes it so hard!. He has improved with his attitude but it's taken a long time to change him!. You have a lot of different health conditions including RA where bloods do reveal a flare more easily than lupus. He should use this as the comparison !. If your inflammation isn't showing and you have joint pain etc then he should think lupus!. Could I just ask, you've been diagnosed with Addisons, was that easy or difficult to do?. Have you been on steroids a long time?. I'm having tests at the mo for it as getting symptoms!. Hope I've been helpful and you feel better that your not alone in this. X

[Loopyloo43 in reply to misty14]

Hi thanks for your reply honestly I had never heard of Addison’s so for roughly theee months or even longer I was having symptoms dizziness slurring of speech vagueness and one awful headache in the end for the latter two weeks I could not shift it with any meds, I went the Drs several times I was sent fir a scan of my head which was normal and after this he basically said I was depressed I went away maybe thinking it was stress etc on my way to work one morning nit far from there I all of a sudden while driving I felt as if I was falling asleep I opened my car windows put my music loud I was on a dual carriage way but focused on getting to my place of work which I worked in a hospital at the time as a ward clerk I parked my car goodness knows how I did this I got from my car I felt dazed but still able to walk into work usually I go fir breakfast for a nurses but by now I did nit look right to the sister on the ward I was insisting on going to get the good and that was it I dropped on the spot and fir 24 hrs I gave no recollection of what went on I was taken to a&e dept am just glad they found out what was wrong but saying this everything we have the Drs are at a loss to treat !

[misty14 in reply to Loopyloo43]

Thanks so much for replying Loopylou, thank goodness you work in a hospital and got there safely before collapsing!. A road accident doesn't bear thinking about!. I too have dizziness and a more variable headache plus other symptoms. I didn't know about Addisons either until my new GP mentioned blood sugar. How are you on the treatment?. How do you get on juggling it?. Do hope you maybe see a different Rheumy whose not so reliant on bloods. You need to feel your getting right treatment. X

[Loopyloo43 in reply to misty14]

Hi misty I see a endoctrinologist six monthly. I take 30 Mg of hydrocortisone every day I found in the afternoons I was way to tired so he suggested taking it earlier rather than 10 M.G. at tea time as I didn’t need the boost that time in the day as I like gardening or if I child mind my grandchildren I need to feel nit so exhausted but then when feeling ill like I do right now they say to double it but because I don’t know what the problem is I end up not doing what I should if it was a straight infection I would double it over a few days to keep my energy levels up.its all trial and error keep a diary it’s the best way if I had not collapsed as I had no cortisol left in my body if they had not found out I would not be here so Drs once again shouldn’t dismiss and as usual thinks it’s the normal everyday issues we deal with x

[misty14 in reply to Loopyloo43]

Thanks loopylou for your good advice. I'm keeping note of my symptoms for when I see my GP for blood sugar resukts next week!. It's the tiredness that's also worse for me so I'm glad you can take the hydrocortisone to compensate!. Let's face it its quality of life and you have things you want to do like I do and if we're I'll we can't!. Do hope you feel better soon and get help from your Rheumy. X

[Bee1london]

Sorry to hear what you're going through. My bloods don't really change much in a flare. I've had a couple of litres of fluid on my lung and been really ill when my bloods were normal so I'd say where possible be guided by your body. You know when something isn't right. That isn't helped at all by Docs who rely purely on blood tests though! Take care and sorry you're having to go through this.xx

[Melba1]

Hello, sorry to hear you’re in a flare. Lots of us have bloods that don’t always indicate a flare. I have felt quite well and had ‘bad’ blood results include ANA +ve and other things the drs like to see as ‘proof’! I’ve also been really ill in big flares and my blood results show very little. Some of us, especially those without kidney involvement (where the bloods seem to show more) need drs who look at the clinical picture, how we feel etc. My dr knows me so well now that within 5 mins he has made an assessment (and he’s always right even when I don’t realise I’m getting into a flare, he does) and he says to ignore the bloods because they don’t mean much with me. There are too many drs that rely solely on blood tests, you need to find one that listens and goes on your symptoms.

After several years of trying to look for patterns in my blood tests we have now found several things that do seem to show a flare but they’re not the ‘usual’ raised ESR, dsDNA etc and they’re more advanced tests so the average A&E dr won’t do them. So I get a raised cancer antigen (which was scary at first because it almost always means ovarian cancer but for a few of us it just shows inflammation) I get very low total complement (CH100 - ask to get yours measured, they will measure C3 and C4 but not often total and that’s another blood marker of lupus flare) and if they look more deeply at each type of white cell (B and T) mine are either low or high in a flare so there might well be that there is something in your blood it might just take time to find it - and even if there is nothing at all that shows a flare in your blood it certainly doesn’t mean you’re not in a flare - you know your own body!

Good luck and never be afraid to ask for another opinion - you need the right care and treatment

X

[Loopyloo43 in reply to Melba1]

Thankyou all .when they do bloods they do the normal monthly ones plasma viscosity blood count and a couple of others but they are always clearly normal unless I have a infection. I ften wondered if there were bloods that could be looked at more closely but if you don’t know what to say or ask for they just let you go and you carry on prob this is a different feed but does anyone else have swollen painful nodes around there waist area whichfrim the spine around to the front below the ribs I have this there are quite a few I showed my gp who just said oh there swollen nodes? And that was it? No idea why or why there swollen and painful so is this just a symptom of unknown. Does anyone else have this my side feels like it’s swollen when lying on it and feels like a golf ball when am driving? Surely if there swollen there is a reason my rheamy laughed when I said my go could feel the nodes he said am surprised as there quite deep! This maybe so if there swollen there bigger hence being able to feel them it seems I have many things that I don’t get help or answers to but feel my health is going down the pan !

[DJK99 in reply to Melba1]

Fabulous reply Melba1! x

[DJK99]

Hey Loopyloo43 - generally I can't get to the GP to have my bloods checked when having a really bad flare, as it's too far away... but even if I get them done say a week later when beginning to feel better they don't change much, if at all. Reading all the wonderful responses above it does beg the question to Rheumy's and docs "when are you going to listen to us - the patients actually going through this! - and learn?! We can't all be wrong/lying/mad!" Tsk. Have to say, your new Rheumy sounds awful. I'd ask for someone else - and send him some info as eekt suggested. What is it they do for a job again??!! If it carries on, I'd contact PALS and ask them to ask him to get a little more updated.. And you are definitely not alone in this - it's very common... unbelievably. Sigh. All best, D x