Not in bloods: I wondered if anyone could help me... - LUPUS UK

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Not in bloods

Kittyjack
Kittyjack

I wondered if anyone could help me please. I have all the classic signs of lupus but it does not show in my blood so the rheumatologist has suggested I might have Behcet's and I haven't got a clue where or who to turn to. 3 of my cousins have lupus and I have every symptom they have but because it is not showing in my blood they say I don't have it I am spending most of my life in bed and I'm only 60 and have also just beendiagnosed with COPD last week to add to the reynards osteoporosis angina fibromyalgia osteoarthritis mouth ulcers every month and if I go out it the sun I am in bed for a least 4 days afterwards. Where do I turn here this is not a life it is only an excistance.

Kind regards

Kitty x

20 Replies
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Hello Kittyjack,

Afaik, Behcet's is another one of these poorly understood auto-immune diseases. In this case, the main symptom manifestation is that your immune system is attacking your blood vessels. I think rheumatologists or dermatologists may be the usual lead specialists, but obviously, as you have multiple diagnoses already, maybe you also have a different lead specialist.

Although the naming of the disease may be problematic. I guess the main point is to make sure you are getting the right treatment to control your symptoms. According to the NHS website, the main treatments for Behcet's are very similar to those for lupus or other systemic auto-immune disease. That is, steroids plus some sort of immune suppressant. So maybe the key message is to clarify with your rheumy who is your lead clinician and how is s/he planning to bring your symptoms under control? x nhs.uk/conditions/behcets-d...

Kittyjack
Kittyjack
in reply to whisperit

Thank you so much Whisperit I really appreciate the kind words and the link. I have to go back and see the rheumatologist in September so maybe she will tell me more then. X

Hidden
Hidden
in reply to Kittyjack

There is a Behcets community here on HU so if you haven’t already joined it and the Vasculitis UK HU you may like to.

In my case I have Sjögren’s, initially misdiagnosed and treated for 5 years as RA. I know there is lots of overlap between all these rheumatic diseases and it was galling to me being misdiagnosed at the time. But I also think the main thing is that you are believed and treated and from what you say it seems that you are being taken seriously if the rheum believes you have Behcets - which is very rare compared to Lupus and often seronegative.

So I’d say you need to learn more about Behcets in order to find out why it’s being considered as a possibility for you. Most sufferers have oral and genital ulcers I believe so if you have these then this might be a consideration.

Autoimmunity, rather than specific diseases, sometimes run in families. I know that Behcets often presents very similarly to Sjögren’s and guess also to Lupus. I know uncertainty is awful but it’s good that your rheum is looking at the bigger clinical picture at least. In Scotland where I live it’s (almost) impossible to be diagnosed with Lupus unless you have ANA and anti dsDNA. And as Whisperit says the treatments are very much the same I believe.

Kittyjack
Kittyjack
in reply to Hidden

Thank you Twitchytoes for getting back to me I have looked at the symptoms and the only thing I don't have are the genital ulcers and I do have a lot of vascular problems with my right leg and foot my foot is always a very dark purple and cold but I thought that was just the reynards. Thank you so much for your kind words and advice and hope you are well x

Hidden
Hidden
in reply to Kittyjack

You’re very welcome. Despite not having Lupus myself this is the main community I use now. I read lots of posts from people who feel they have Lupus but can’t get their doctors to diagnose it due to negative blood work.

The official info given out is that only 5% are seronegative for Lupus and 10% for Scleroderma. So most rheumatologists consequently discount the idea of diagnosing these 2 diseases in seronegative form.

And in terms of realistic likelihood of “is it a rare bird or just a ruffled starling?” - RA, UCTD and Sjögren’s have 30% chance of being seronegative so it’s 6x more likely to be one of these than Lupus - if we go by these stats relating to diagnostic criteria.

But then we also have to bear in mind that many doctors see patients with Lupus and RA daily whereas they may not have a single patient with Behcets or some other types of Vasculitis or Scleroderma.

Then if we add Behcets/ ANCA negative Vasculitis, Psoriatic Arthritis, Anylosing Spondylitis and other types of inflammatory arthritis into the equation these are all far more likely to be seronegative than seropositive.

So with statistics and likelihood and symptoms it’s very complicated for rheumatologists to work out - let alone us! All we can do is read up and communicate with fellow sufferers.

Whether these stats are a true representation or not, the likelihood of getting a diagnosis of Lupus or Scleroderma with negative bloodwork is very small compared to some other rheumatic diseases. And with so much overlaping symptoms and treatments I’ve concluded that there’s a lot to be said for expediency over the name we are given. Some of these diseases have a lot more clinical trials, research, public awareness and treatments than others.

And on that last point of experience only, I think Sjögren’s is at the very bottom of the pile. So I admit I’d trade my disease title in for most of the others in order to access further treatments and the greater understanding of doctors! X

Kittyjack
Kittyjack
in reply to Hidden

That is great information Twitchytoes and again many thanks for your help I really appreciate it x

Lisalou19
Lisalou19
in reply to Hidden

Just having a little read through recent posts. I have to say Twitchytoes your knowledge is outstanding. I could so see you on a tv program, this morning or loose women to educate others regarding these illnesses xx

Hidden
Hidden
in reply to Lisalou19

Well thanks but all my knowledge is based on my experience and research rather than anything medical. I didn’t even get as far as o’level maths or biology! Disclaim disclaim!! X

Hidden
Hidden
in reply to Hidden

Oh Twitchy, smiling here at the thought of you being a LOOSE WOMAN I think not sweetie. XXX

Hidden
Hidden
in reply to Hidden

Indeed Poems!! - it chimes rather nicely with a question my neurologist just asked about how I’d got on with Sildenafil (Viagra) prescribed for my Raynaud’s. I replied with a serious expression “well it gave my nose erections so I had to stop”!!

Also a comment my husband once recorded on his notebook from my rheumatology review “she has libido on her knees and feet”. X

Hidden
Hidden
in reply to Hidden

:-) :-)

Kittyjack
Kittyjack
in reply to Lisalou19

I totally agree with you Lisalou it was very informative x

Sorry to hear you feel so poorly 🙁. Did you get any treatment? If you feel you have lots of lupus symptoms it might be worth seeing a different rheumatologist who specialises in lupus and understands that blood tests are only a part of the picture and that they aren’t essential for a diagnosis. My lupus rarely shows in my blood but I’m at a big hospital where they have lots of us ‘unusual’ types and they know whether you’ve got it or not on other signs and symptoms. Could you get a second opinion?

X

Kittyjack
Kittyjack
in reply to Melba1

Hi Melba I have been looking on the internet for a specialist near me and I have found one at Freeman road hospital so when I see my Dr in 2 weeks I am going to ask if she will refer me to her it's a Dr. Griffiths and by all accounts she sounds very good and thank you so much for getting back to me. I would be lost without this site. Hope you are well x

Hello, I also had all the signs of lupus but my blood work did not show it. Until one day I had a bad flare all over my legs. I went to my dermatologist and he took a biopsy and that’s the way we found out! Sometimes it will not show in the blood but in the tissue. I have skin lupus! I can’t be in the sun!

Kittyjack
Kittyjack
in reply to Khalf

Many thanks Khalf like you I can't go in the sun otherwise I am in bed for 3 days later and it makes me so so weak. I hope your well and thanks again x

bedboundjules
bedboundjules
in reply to Khalf

Do you happen to know what type yours is called? Mine is called Tumid Lupus. When it first appeared was largely on my right breast. They thought Ihad Inflammatory Breast Cancer, which at the time I had heard of neither one. Like so many of you I have many other rare immune diseases and have been on disability for about four years now. I had a massive stroke two years ago due to a rare blood disorder they found. Nice right, walking around 48 yrs and could have dropped dead at any time. New to site first time writing. : -)

Dear Kittyjack,

I have several 'Overlapping' strains, of ANCA Vasculitis- how do I know this, well it's taken years- I mean Years- to finally track 'Everything' together. I don't know about Lupus specifically but I DO know, by now, a fair/reasonable amount about Auto-immune Disease generally.

Not 'Everything' shows up, in blood tests, as Khalf mentions above. I am, in some ways fortunate, that my left eye becomes red and sometimes swollen, if my Vasculitis start to become more Active. Sorry that I can't give you any Better answers Kittyjack- love the 'name' by the way. Have you a Consultant/Doctor, with whom, you can just 'Chat'? If so maybe a, half hour, conversation might benefit you both. Just a thought.

In any event I send you my Very Best Wishes.

AndrewT

Kittyjack
Kittyjack
in reply to AndrewT

Thank you so much Andrew for that infomation it is so frustrating I have been going back and forward to the rheumatologist for just over 10 years now and sometimes I feel as if I'm not understood with all the symptoms and it gets very frustrating. I am seeing her again in September so hopefully she will discuss it more with me. Many thanks for your reply and I hope you are well x

Hidden
Hidden

Couldn't you ring the hospital and try to get an earlier appointment? September is such a long way off. XX

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