Finally been to a specialist : Hi guys, I finally... - LUPUS UK

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Finally been to a specialist

Gizmo81 profile image

Hi guys, I finally had my appointment. She was lovely, we live in Brisbane. Australia but she has worked at St Thomas, London lupus clinic so I felt confident she knew what she was talking about. She said I have symptoms but not enough blood work to say I have lupus. She used this to describe me, a house full of lupus people and some people outside on the grass, still have symptoms but not a full diagnosis. She’s running more tests and she recommends I start Hydroxchloroquine. Anyone else on this? I’m happy I’m not lupus as yet but a bit deflated that I’m still in the same boat and it makes it hard when people are so black and white so if you don’t have lupus your fine! Makes it so hard

21 Replies

Don’t worry about being a definite or a possible. I think a lot of us are like that, and sometimes it takes years even to find a helpful rheumy. Yours sounds good, and I like her analogy.

Hydroxy helps me, but it takes some time to show the benefits .

Gizmo81 profile image
Gizmo81 in reply to Lupiknits

Thank you, I’m not sure if I should try it or not, feels strange taking something when I don’t have a diagnosis but I guess if it helps with symptoms that’s a bonus

Lupiknits profile image
Lupiknits in reply to Gizmo81

It’s up to you, but is worth a try. My rheumy said it would take about 3 months to kick in, but for me it was more like 6 ( though others noticed a difference before). I stopped it for stupid reasons after a year or so. Two months later I was back. By the way I didn’t have a definitive diagnosis at first either. I’m still a mixture of autoimmune disorders but no definite lupus diagnosis, just some indications.

Sometimes the first week or so people have noticed it upsets the stomach a bit and makes you itchy, but that passes.

Gizmo81 profile image
Gizmo81 in reply to Lupiknits

Thanks for this info great help. I will probably give it a try

Lupiknits profile image
Lupiknits in reply to Gizmo81

Let us know how it goes x

Hi Gizmo81,

I don't have a solid diagnosis although I've had many labels put on my symptoms (and frequently changed) over the years - RA, undifferentiated autoimmune disease, fibromyalgia, rosacea. Like you I have symptoms but nothing showing in my bloods. My original rheumy (who left to do research) said that Lupus or some other autoimmune condition could not be ruled out even if bloods weren't positive. I have been taking hydroxy for quite a few years which has helped with many of the symptoms, particularly joint pain. At the suggestion of my rheumy (who has always been less supportive and taken the view that if your bloods are negative, there is nothing wrong with you)had I stopped for a trial period recently and after a couple of months symptoms were getting worse. Unfortunately my rheumy discharged me but luckily my lovely GP has re-instated the hydroxy and referred me to Guy's and St Thomas in London.

There are many people on this forum who have not had a definitive diagnosis. I always say getting a diagnosis is about as easy as nailing jelly to a wall. Hydroxy seems to be the starting point for meds to help with many symptoms. As Lupiknits said it does take some time to work. Good luck whatever you decide to do.

Gizmo81 profile image
Gizmo81 in reply to grannyjogger

Thank you and good luck to you, I know st Thomas is an amazing place my mum went there, hopefully you will get more support there

You have an excellent doctor with a perfect analogy. Many people are in that category. Autoimmune diseases evolve. Many people are not in a specific category in the early stages. She has enough information to know you have something inflammatory and she must see some lupus symptoms to be using that analogy. The positive thing is you have someone with the expertise to make that call. And start treating you! Remember some people stay in a mild « undifferentiated » category forever. I have. Good luck to you. K

Gizmo81 profile image
Gizmo81 in reply to KayHimm

I think because I have a strong family history of lupus so she’s taking it seriously which is really good. Unfortunately my mum had a very complex version of lupus and passed away. It’s definitely not a diagnosis I want but as I’m getting older I am getting more and more symptoms which is scary and so many people out there just do not understand. It’s lovely having the support in here from you all. Thanks for taking the time to message.

I so agree. It's the certainty which makes the difference. I think they're going to have to change their minds about blood work. NHS are stitched up about it. It may have to do with medication and pharmacy regulation. At least my GP's accept I'm light sensitive. I belong to Lupus Foundation in the States and one comment by a consultant, was to look at everything else and bloods last. The results change from test to test anyway. A haematologist is more skilled in this anyway. Check out Lupus Foundation. They have check lists as well.

The booklet produced by Lupus UK, hLupus, the Butterfly and the Wolf, is well worth getting. It's for the medical profession. We'll get their in the end.

I found hydroxy helpful almost immediately.

You do end up with blue legs tho! And possibly nail bed and mouth roof. I just have the blue legs. Thought it was brushing till I was told it's a side effect. Bit of a bugger in the summer! Lots of fake tan!

Guatmom profile image
Guatmom in reply to Coppernob

The sun is my enemy. My legs have not seen the light of day in 5 years. A sunburn on my legs caused my worst flare ever.

Hi Gizmo81,

I’m in the same boat as you - been diagnosed as lupus but not 100 per cent sure by doctor and blood test results. Seeing specialist soon but from what I gather it is very difficult to get a black and white answer - Sometimes several years. I was started on hydroxychloroquine about three months and it does take time to work. Lots of people on steroids too though I declined those. I take anti inflammatories and paracetamol when I have to

Joints remain painful and symptoms persist though my condition is now slightly more stable - rolling hills rather than peaks and valleys.

This site has been so helpful.

I wish you well and hope the hydroxychloroquine kicks in soon.

Autoimmune conditions seem to evolve so even if you get a definite label it might change like mine. I was diagnosed with lupus but to be honest I always thought there was something else. I am now mixed connective tissue disease. I would try the hydroxychloroquine, it helped my energy levels a lot. It took about 2 months before I noticed anything and I had an upset stomach for a couple of weeks. It didn’t Do much for other symptoms but I now take a cocktail of other immunosuppressants in addition to the hydroxy. Half the battle with these conditions is finding an understanding, knowledgeable dr who is willing to treat you despite not fitting neatly in to one diagnostic box

Congrats on having such a reasonable consultant Gizmo81, and I’m glad you were seen by someone who knows their stuff!

I have ALOT of symptoms but my bloods keep coming back negative, which I’ve been told can be quite normal from several people here. My consultant told me that because my bloods are fine, then I must be too and that he thinks I’m like any other ‘normal’ person. The only advice her gave me was ‘don’t go out in the sun’, because I get a terrible itchy red rash on my arms and it flares up a lot of my symptoms. How can you tell someone not to go out in the sun, particularly if they have a Vit D deficiency and chronic depression/anxiety, whom is also a carer for her Mum?! What kind of advice is that? I’m like any other ‘normal’ person, but don’t go in the sun 🤔🙄.

It’s great that she will trial you on hydroxy though, a lot of people have had their diagnoses just based on their response to medication, so I do hope all goes well and it makes you feel tons better!

Will you be seeing this consultant again? My Mum is on hydroxy for sjögrens and rheumatism and swears by it. Let us know how you get on with everything lovely, best of luck and you’ll be in my thoughts 💖🌟

From what I've been reading there are a number of different types of Lupus only some types don't show up in blood tests. I seem to be one of those who have signs and symptoms but blood tests are negative or borderline.

I've been put on Hydroxychloroquine and it has helped with painful feet and most of the rashes. Have now been reduced to one tablet a day and it's all starting to return.

From what I've heard it doesn't agree with everyone but you won't know until you try. X

Gizmo81 profile image
Gizmo81 in reply to Boudica1

Thank you I think I will give it a try, it’s better than nothing I guess. Glad it works for you

I’d like to see one of your guys consultants I have brain lesions and symptoms visible ones and ones that show on a pet scan muscle twitches and jolts and I still get no treatment 🤦🏼‍♀️ I don’t know what I’m doing wrong.

So pleased tho you have been offered treatment it’s the worst to sit with symptoms and no help it’s the worst

Hope you feel better soon xx

Gizmo81 profile image
Gizmo81 in reply to Buckley123

My mum had brain lesions, my mum was under st Thomas and the royal liverpool hospital, are you near any of those places? Professor de Cruz is excellent and she was with Dr Bucknal but he retired My mum was put up in accommodation whenever she had to go to st Thomas. I actually paid private to see my specialist because I’m in Australia.

Buckley123 profile image
Buckley123 in reply to Gizmo81

Thanks for your reply yes I live near London. The first doctor I see diagnose me with ms same as my mum. Next ms specialist was so sure it was lupus all my bloods are negative so I get no treatment. Xx

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