In September 2023 I found out by chance that I had apparently been diagnosed with lupus 15-20 years ago. I haven’t been told at any point in this time by a doctor - I found out almost by accident from my GP physio. Since then my current GP has been initially verbally supportive although said they knew very little and would need consultant input. I’ve had a blood test to check (also lupus positive) and was told to have another in 12 wks which the consultant would organise. I’ve heard nothing since from my GP or a consultant. I’m now going away for work for three weeks …
I think I have lupus mildly, although I’ve always been ‘encouraged’ (pushed?!) to do all I can and then some (work, exercise) so I worry I’ve learned to fight against potential symptoms and keep going. I just would love some medical into to help me know more and to not have to push so hard for this!
Why is it so hard to get medical advice and support? What do I need to do, if anything, to get this?! I’d really welcome any advice and support as I feel I’m struggling to keep my head above water with it all. Thanks so much folks 😊
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opalescenthope
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I have to say I was a little shocked to read that no one has told you about your lupus diagnosis; however, after requesting my medical records for the past 12 months, I shouldn't have been. I found lots of stuff my specialist and doctors hadn't told me!
Regarding treatment, if you are managing to live a "normal" life, working, socialising, and exercising, then the advice to push through is probably the best there is. However, if you are struggling to do daily tasks and feel things are getting worse, it might be time to consider treatment options. It would help if you discussed this with a rheumatologist and not your GP, as they will know little to nothing about your condition.
The thing to remember is there is no "magic pill"; many of the medications that are on offer come with severe side effects that should not be taken lightly. My approach is to avoid all immunosuppressants for as long as possible, but that is what I feel is best for me; it might not be the best for you.
I hope you manage to get an appointment with a good rheumatologist. A question I always ask my doctors/specialists is, "What will happen if we do nothing? “
That’s great advice - thank you so much! It’s good to know keeping going is ok so long as things aren’t getting worse & to think about what would happen if nothing is done if things do get worse. I needed that info! 👍🏻 Many thanks
You might find menopause is in the mix now. This tipped me over the edge into a whole change of life in my mid 40s. My rheumy said its like putting a rocket under any symptoms you have making them supercharged. My energy levels are not great now whereas in my 30s I could cope but getting a bit tired. I was undiagnosed but had mild symptoms like you. If you haven't got one you need a Rheumatologist asap and a full set of bloods and urine. You need an autoimmune specialist Rheumy to guide you through this next part of your Lupus if you're symptoms are now beginning to change. You need hydroxychloroquine if you don't have it. You need to rest when your body tells you, if you push things then the chances of a real big flare up are greatly increased. This is not a condition you can just push through, make sure your doctor knows this and your family and if you have to say 'today I can't manage all I want to do', then that's ok. Don't feel guilty about resting in the day. You may have got to the point where you need to or else your symptoms could go into overdrive with menopause in the mix now. I hope you get the right help soon. The Lupus support groups are great too for first hand advice on how others feel and cope . Take care of yourself and go easy until you're more sorted on the medical help front.
Yes, definitely. The lupus anti-coagulant is just one test. The name is unfortunate. Systemic lupus is an illness that affects various organs and blood. People generally have symptoms of painful joints, fatigue and fever.
You might would to join the Sticky Blood group. There are lots of people like you.
It still isn’t clear why they didn’t tell you. Maybe they used a different name and treated you to prevent miscarriages.
It sounds highly unlikely they diagnose systemic lupus. Your GP would see notes related to that. You would have to have had symptoms in addition to the lupus anticoagulant to diagnose systemic lupus.
It is confusing.
Look up systemic lupus and anti phospholipid antibody syndrome. That will help.
Hi opal. If this is indeed true, it is known that inflammation is associated with nutrition and lifestyle. That being said, I agree with others regarding getting a rheumatologist on board and be open minded regarding taking plaquenil which is first medicine offered usually for lupus and mild lupus. I was not diagnosed or cared for for years and years. I was treated for mild Lupus symptoms starting in 2016. I’m no longer in the mild category and it is evolving quickly. Be open minded to your doctor’s help. Best to you
Welcome to the LUPUS UK Community Forum! I am sorry that you are feeling lost, I would suggest chasing your doctors about the follow up tests they recommended.
I have attached below a link to a page from our website regarding testing, diagnosis and treatment. There is a section about half way down the page, which discusses ANA results. Your doctor will be able to answer any questions you have about this.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
In despair feeling lost and very low 😔
Feel lost 
Feeling Lost
Feeling overwhelmed and anxious with a constant lump in my throat.
Newly diagnosed and a little overwhelmed.
