I have been diagnosed with lupus (skin and query SLE), joint hypermobility, and reynaulds. Since Christmas I have had recurrent infections (tonsils, ears and kidney) and since then have felt really ill - tired, headachy, skin rash up on back and face and also face feeling very swollen with it. Mobility affected to such a degree that at one physio/occ therapy appointment I was given a stick to aid walking (felt i had hit a really low point that day)
Anyway in the end rang up my lupus nurse and was in floods of tears trying to explain how ill I really felt, she suggested bloods. Got the results and guess what all normal.
She was going to speak to a consultant and get back to me. I did end up saying to her, if not lupus then I could really do with knowing what on earth the matter is with me. What I suppose I am trying to make out is can you have Lupus with normal bloods - i have all the symptoms (lupus diagnosed by dermatologist), tiredness, aches and pains, rash on face, ulcers just inside my nose and sometime mouth is so sore can barely eat or drink anything too hot.
Thanks for reading.
Any advice gratefully received. xx
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tjperfick
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Hi. Sorry to hear that you have been suffering so bad. I have lupus and have always had normal bloods until recently. I Have a negative Ana test but did test positive for the hla b27 gene (think that's what it's called) which can indicate auto immune problems. Just recently had lower lymphocytes too which can be the lupus.
Had bloods taken whilst in the worst flares and they have all been normal. Very frustrating! Suppose this is why diagnosis takes so long. Am on hydroxy and mycophenolate, started feeling a whole lot better
Just keep making notes of symptoms and tell them everything, I used to take photos of all of my skin rashes and show them. Was finally diagnosed for sure from the dermatologist within my lupus clinic.
Good luck with everything, don't give up. Big hugs.
Thanks Joanne and Barnclown, I was borderline diagnosed about 10 years ago and then nothing done, no monitoring etc. Then saw a dermie last March and started treatment with hydroxy then. Saw a rheumatologist in May and she diagnosed hypermobility, reynaulds, possible fibro and query SLE!! But she puts so much emphasis on blood results that sometimes I feel like I am wasting her time when I have seen her, even though she still sees me in her dedicated Lupus clinic time. All she concentrates on is my joint hypermobility problems. I have so many of the symptoms (rash, tiredness, aches, ulcers etc) but just not the bloods to go with it. I also have many water infections with protein and blood often in my urine samples when I see my GP with kidney problems. Don't know whether it is related or not, but I have got cysts on my kidneys and also a leaking heart valve which I am monitored by a cardiologist for.
Goodness me, you need to be on a stronger treatment for lupus, an immunosuppressive. I get that your rheumatologist only relies on blood tests but say to her that you need to feel healthy, so how about start you on a trial of immunosuppressives and see how if there is any improvement. If she still doesn't want you to start that yet, ask for a trial of steroids and if that improves your symptoms, that shows inflammation in the body, so then you can argue for immunosuppressives.
I'm sorry to hear that you're unwell at the moment and I know how frustrated you must be feeling. I too have sle, raynauds and chronic regional nerve pain. I just wanted to share that I had my worst flare ever about 6 week's ago which lasted for a month. Like you my rheumy recommended blood's which guess what, came back normal but when I had a steroid injection the flare subsided Which proves their was inflammation. I've had a few positive ana's, elevated esr and crp levels but surprisingly when I'm feeling at my worst my blood's never image that. I don't rely on bloods anymore to determine how sick we are as we know our bodies better than any consultant only going off what they see on paper.
Hi, so sorry to hear you are having such a bad time of it... the difference in attitudes between rheumatologists never ceases to amaze. My routine bloods have always been normal no matter what infection have had or how I've felt although I have been found to have
positive ANA & Anti Ro which along with my long symptom history helped to lead to my diagnosis. However my Rheumatologist says that in general blood tests cannot be relied on in lupus as they are often normal when it is so obvious from the amount of pain,swollen joints etc that there is something going on, he prefers to go on how I feel, what symptoms I report and his own examination and will then adjust medication accordingly with the aim of suppressing the activity as much as possible...he is never surprised by anything I tell him regarding symptoms, but he always takes things seriously and examines does appropriate blood tests and investigations if necessary to rule out any other potential problem.. then if everything still look normal we feel reassured that we can put it down as another case of lupus behaviour and reassess the medication dose as necessary. In your situation I would definitely be asking about a steroid trial if you have not already had one and also raise the subject of immunosuppression. Wishing you best of luck and hope you get some more suitable treatment soon, take care, sending big hugs. x
I am wondering should I change consultant or just try and stick with this one?
If I didn't have the symptoms like the rash and tiredness, I would def be looking at pushing for a diagnosis other than lupus, but my gut tells me that this is what it is and I keep coming back to the fact that I sometimes know when the rash is bad on my back I don't even have to look for it - I know from the chronic and overwhelming tiredness I get.
Re trying another consultant: my first rheumatologist in 2010 was good in some ways, but i felt no sense of conviction or urgency in the way that hospital related to me. as soon as I knew Lupus was likely to be significant in my diagnosis, I found out which of my local hospitals had the most lupus expertise, and got referred there. Even then, I dragged my feet cautiously, lettng the clinic take 2 years getting to know me on hydroxy before I began to push hard for permission to at least try prednisolone. My clinic's approach was to let me have 3 tapers from 10mg down over the course of 4 weeks in any 1 year. So, as soon as one of my typical flares of fatigue & cognitive impairement & vertigo & lower spine synovitis came on, my drs got me to try one of these pred tapers last year...and in the course of 2013 I tried 3 of these pred tapers and responded so well that my clinic is now trying me on mycophenolate.
Basically, I agree with Purpletop's reply: maybe just prepare a super thorough case re your symptoms & treatments so far, present this at your next clinic & ask if you can at least try a pred taper, if not myco itself? Remember to take along photos of any symptoms poss eg rashes, and to score your symptoms 1-10 etc. If you feel you need to be seen sooner rather than later, ring and ask for a prompt appt.
Wishing you all, the best, let us know how you get on
I would definitely follow the advice of Barnclown and Purpletop and go along to your next appointment armed with both detailed notes of all your symptoms past and present and photos of your rashes, include treatment responses to date and request a medication review specifically asking about prednisolone and immunosuppressants. As you are already being seen in a dedicated lupus clinic you would expect your rheumy to have a better understanding of the fact that blood tests cant always be relied on in lupus and also more importantly to be a little more proactive in trying to bring your symptoms under control and give you a better quality of life by at least allowing you to trial the treatments available, most autoimmune conditions will respond to some degree to prednisolone and/or immunosuppressants regardless of the actual label attached..so it is worth asking if you could try something along these lines and if she say not then you need to know why not.. Is there any chance your lupus nurse could go into the appointment with you for support, I used to work in clinics and we often had specialist nurses attending with the patients or writing notes to the consultant to help explain what had been going on between appointments...really wishing you good luck x
Thanks for this - all my consultant says is that there are about 5% of lupus patients with negative bloods for Lupus, but doesn't seem to want to attach that label to me. I am going to ring the nurse again this week and try and get some answers from them.
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