Hi all, I have a couple of questions for anyone who is able to answer. Firstly, I have been told I do not have Lupus after blood tests even though I have symptoms and they have kept me on Hydrochloriquine 400mg???? However, whenever I have had a blood test I haven't been feeling too bad. Normally do you need to be in a flare for Lupus to be detected? I have no diagnosis yet, but a day after coming back from holiday I have been really bad with fatigue, pain in fingers,toes, knees and strange like mottled (almost livedo looking) palms which throughout the day will come up and on inside of my arms as they ache too. I also have a really bad right shoulder which is now hard for me to lift or to hold up for any length of time. I continuously get mottled legs when am feeling bad and feel sick with the pain. I don't know where to turn and am in tears with it when it gets bad like this. I can't explain the pain to anyone around me, it's really hard. I had chest pain a couple of days ago when breathing out more than breathing in which was sharp but only lasted for a couple of hours and then went. Should I be worried about this? Am really struggling with general daily stuff and finger pain is bad this time around. The first consultant I saw said maybe I have fibro but he then said that fibro patients normally do not respond to prednisone which I did twice - almost immediate relief albeit for a short time!! Also, fibro patients are not usually affected by the sun whereas I am and get livedo and swelling on my legs, fatigue and joint pain if I was to sit in sun for too long. Any help or advice would greatly appreciated. Feeling desperate again!!
Thanks and hope whoever reads this post is having a good day xx
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Benne09
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First, please don't panic Most people here have had similar experiences at one time or another - we often spend long periods with uncertain diagnoses, or changing diagnoses, and lots of waiting around for answers. One thing to be clear about is that lupus/SLE is only one of a whole range of similar, closely related systemic auto-immune conditions. Diagnosing which you have - or even if you have one at all - can be tricky, even for specialist consultants. It is important, though, that your doctors are being clear about what they are doing and thinking, and explain what their plan for monitoring and treating you is.
The LUK leaflet on symptoms and diagnosis may help you understand how lupus and similar conditions are diagnosed. lupusuk.org.uk/wp-content/u...
Hydroxychloroquine (HCQ) is often prescribed for the whole range of AI conditions, and some clinicians also use it in fibromyalgia (which is itself a poorly understood and characterised condition).
My advice would be to visit your clinician again and get him/her to explain their thinking - in particular, get a clear answer to what they think accounts for your most troublesome symptoms and a clear plan for future testing, monitoring and treatment. And keep in touch here if you have other experiences to share! x
Have you been tested for Connective Tissue Disease, which would account for most of your symptons?
I would keep a diary of all symptons and tell your GP or Consultant every one of your problems. Also Lupus doesn't always show up on blood tests alone.
Do not be put off, be polite but firm. If it's any consolation we have all had to go through this to be diagnosed but you will get there in the end.
Wishing all the best - keep in touch and let us know how you go on.
The doctor could mean that you do meet lupus criteria and that certain antibodies are at a lower level than in lupus. They take many, many symptoms and labs into account. The first thing to do is ask if they think you have autoimmune disease. You have been on steroids and plaquenil, so I think they are treating you as if you do. It is common to have features of connective tissue diseases like lupus and others but be ill-defined. You have a good doctor if he is not giving you a diagnosis of lupus when it is not clinically accurate. You sound similar to many people who are diagnosed with undifferentiated connective tissue disease. Has the doctor maybe used that term?
Hi KayHimm, yes I have had this term used for me by my consultant but then he sent me on my way as if this is nothing and mild and will not be an issue in my life!!! When I tried to contact the nurse when having a really bad episode they ignored me and called back two weeks later. Now I just feel like giving up on going to the Dr or Consultants, it has really put me off seeing medical professionals and I get really anxious and nervous if I have to.
Although you have not been diagnosed with lupus, it is great to hear that you have a proactive medical team who have put you on medication to help manage your symptoms.
It is ideal to be tested for lupus when experiencing a ‘flare’ however, it is not mandatory. A flare usually indicates higher disease activity within the body. It is common for people to be diagnosed with fibromyalgia during early stages of lupus. To find out what tests and criteria are needed in order to make a diagnosis of lupus, click here lupusuk.org.uk/getting-diag...
Do you experience light sensitivity? Many people with lupus experience a flare of their symptoms when exposed to sunlight. The most common symptom is for rashes to appear on the skin, affecting areas that are frequently exposed such as the face, neck, hands and feet. People may also experience fatigue, nausea, headaches and joint pains. We published a blog article on ‘coping with light sensitivity’ which you can read at lupusuk.org.uk/coping-with-...
Have you spoken to your doctor about the pain you are experiencing when breathing?
If in doubt, it is always worth speaking to your doctor about the symptoms you are experiencing as he/she can provide you with the correct advice and treatment. Also, the doctor may refer you to a specialist such as a physiotherapist or pulmonary specialist if required.
Below, I have included some information links which I hope you will find useful:
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.
Most people here have had similar experiences at one time or another - we often spend long periods with uncertain diagnoses, or changing diagnoses, and lots of waiting around for answers. One thing to be clear about is that lupus/SLE is only one of a whole range of similar, closely related systemic auto-immune conditions. Diagnosing which you have - or even if you have one at all - can be tricky, even for specialist consultants. It is important, though, that your doctors are being clear about what they are doing and thinking, and explain what their plan for monitoring and treating you is.
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