Lupus

Hey, I am a 20 year old Female and new to this I just wondered if anyone has experienced the same as me in some way. Last September I became ill with symptoms very similar to the flu apart from I had no runny nose or sore throat or cough.

Under my armpits my lymph nodes were agony and I had lumps at the tops of my arms further up quite a bit above the elbow that were rock solid and hot to touch with red marks that became worse. They should normally be really soft.

I was sleeping all the time I’d open my eyes and would fall straight back asleep and that’s not like me at all. I went back and fourth to my GP who tested for Lymes disease, cellulitis and they came back normal.

I got antibiotics anyway and I was gradually getting way worse. I then got referred into hospital and spent a week there. They took so many bloods and they were all coming back normal a part from my inflammation markers were high. The hospital then discharged me on 30mg of prednisolone steroids and referred me to dermatology because they’d taken a skin biopsy to check about the inflammation in my arms. They explained I was a mystery and thought it was an infection.

I was then back to normal after a month I was like my old self, I was so happy I thought that was it and the steroids had worked. Then I decreased my steroids gradually and on December 23rd I’d completed the course of steroids. Then at the start of January it started all over again but 10 times worse. I became so ill I ended up in A&E but they couldn’t do anything because I was under a consultant. I was then going back and forth to dermatology for 4 months and they kept sending me away because they just didn’t know what was wrong and they just thought it was a really bad infection but by this time it was 9 months down the line and I was still ill. Then they referred me back to rheumatology.

When I seen the rheumatology consultant I explained my situation from the very beginning and he explained that if it was an infection the steroids would’ve reacted to this and I would’ve been so so ill. However I became way better on the steroids and when they were lowered I became ill so he explained that that’s the signs of an auto immune disease.

He then said that without looking at my bloods all my symptoms are showing all Lupus. He explained that he’ll do the tests but he feels they are going to come back negative but he says he has 5 or more patients who do have lupus but their tests do still come back negative.

He was right my tests did come back negative. However he still has treated me for lupus and I begun methotrexate 8 weeks ago. I still have a long way to go I’m still quite ill but I’m managing it and pushing myself to do things. The methotrexate has given me more energy and I’m still on 12.5 mg of steroids. I just feel sometimes I can’t say I have lupus because my tests came back negative but everyone I’ve spoken to has been lovely and said I have every right to say I have lupus because only once your bloods can come back positive in the whole time you have lupus. I just wanted other people’s opinions?

These are my symptoms I’ve had the whole year

Legs arms in agony and swollen lumps in my arms

Tiredness

Sickness

Chest pains - an also to point I can't breathe like I struggle it's similar to like a panic attack but I never used to ever get panic attacks.

Breathing fast

Joint pain/muscle pain to point can't move

Pins and needles

Sickness/Nausea

headaches really bad

Sensitivity to light

Whiteness in face and fingers

Urine infections for a while

Fainting

Change in moods - angry, upset, emotional, worrying about stuff is never normally worry about.

When Lowering steroids feel really ill

14 Replies

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  • So sorry you have been ill, you can have autoimmune diseases even with the tests negative they look at the whole picture especially symptoms I would get a second opinion so you feel better about your diagnosis. With autoimmune diseases you can have flares; periods where you feel good then periods when you feel ill. Hope this helps some.

  • Hi Oakley_isaac

    So sorry to hear about your illness and the difficulty getting answers from the medical community. On the good side, thankfully you’ve found an understanding and knowledgeable rheumy! Getting a diagnosis isn’t fun but it’s actually worse knowing there’s something wrong, having negative blood tests and feeling like you’re losing your mind😩I totally sympathise, my immunology tests have also been negative so you’re not alone. I’ve had a borderline ANA but when repeated it was then negative. My other blood tests + symptoms led my rheumy to diagnose lupus in 2013. Last year, she retired and my new rheumy is now backtracking, questioning the diagnosis on the basis of insufficient immunology results😩Well done following your instincts until you got some answers that made sense! Hope you feel better soon x

  • Hello and welcome. I'm so glad you found us. None of here is medically trained and so we can't diagnose anyone or offer medical advice. But we can share our own stories and offer support. It definitely sounds like something auto-immune is going on. It sounds like your doctor is one of the good guys, in that he's prepared to treat you for an auto immune illness without positive bloods! Which means he is forward thinking and knows his stuff. So many of us here have doctors who wont treat on symptoms alone - they want bloods and we all know that doesn't happen with everyone. So good start for you. I hope the methotrexate helps soon. it should. You're 8 weeks in? How are you feeling? I take MMF, another immune suppressant and that actually took me about 5 months on full dosage to feel the full benefits. So hang on in there. But with the steroids too you should pick up quite soon. Don't be afraid to ask questions. We want to help. And take a look at the Lupus UK site. There is so much info on there re diagnosis etc. The average diagnosis takes 7.5 years. Mine was about 5.5 years I reckon, with hindsight and I'm nearly 4 years post diagnosis now. My current combination of hydroxy, MMF and Mepacrine is giving me the best spell healthwise that I've had for quite sometime. Still get bads days but there is hope. Best wishes. Wendy

  • Hi, yeah they defiantly know it’s auto immune for sure he said it Looking more and more like lupus because of my symptoms. Yeah I’m 8 weeks in to methotrexate it’s working good i haven’t seen a major difference I think it’s to early to say😔 but I do have more energy! I’m just struggling to reduce my steroids because every time I come down to 9.5 I end up Ill again 😔 so I think he’ll put up my methotrexate. Yeah it’s a long time😔 how are you now? Thanks Wendy for your advice and information it’s been really helpful!

    Oakley x

  • Hi Oakley_Isaac,

    Welcome to the LUPUS UK HealthUnlocked Community!

    Flu-like symptoms, joint/muscle aches and pains and headaches are all common symptoms that are associated with lupus. We offer a free information pack which provides information on the symptoms and diagnosis of lupus; you can download or request the pack here lupusuk.org.uk/request-info...

    It is important to bear in mind that lupus presents differently in everybody therefore, it is unlikely for two people to share the exact same experience. It is possible for people to experience periods of remission where their lupus is controlled and they feel relatively better; reducing the signs of their symptoms.

    95% of people with lupus will have a positive ANA test however, 5% will not.

    Have you spoken to your doctor about the symptoms you are experiencing?

    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 physiotherapist or pulmonary specialist if required (breathing difficulty).

    We published an article on our blog about pain management which contains helpful tips and information which you can read here: lupusuk.org.uk/pain-managem...

    An increased sensitivity to light is a common symptom of lupus. Sunlight can cause people with lupus to experience nausea, headaches and joint pains; joints can become tender to touch and can become swollen. We published a factsheet on ‘LUPUS: and Light Sensitivity’ which you can read here: lupusuk.org.uk/wp-content/u...

    If you need more information about artificial lighting and ways that you can help to protect yourself from it, we published an article which covered this last year: lupusuk.org.uk/coping-with-...

    Sometimes, certain situations can be overwhelming which is why talking to someone can help relieve worries and anxiety that you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk .

    Please keep us updated, wishing you all the best.

  • Hi. Would you mind telling me who you saw and where?

  • Hello. I have now visited London Bridge Lupus Centre twice. I see Dr Kaul. But there are a few great Lupus doctors there, including Professor Hughes. Take a look at their website. People travel from all over the world to attend this Lupus clinic. It is private. So you have to pay. But if you can get an NHS referral to a Lupus Centre of Excellence, they are NHS.

    londonlupuscentre.co.uk/

    Hope I've helped, feel free to ask any more questions.

    Wendy

  • Hi Wendy - do you know how much it costs? Feel free to PM if you prefer. Thanks x

  • No, that's fine, I think the fees are common knowledge. From memory Dr K charged £230 for the first appointment but you get an hour. Last Friday's appt was 1/2 and cost £205. If you phone them the secretary's are very helpful and knowledgeable. If you use the search facility on this site and look for London Bridge you might find others and/or other posts re this private Lupus clinic. I know there are many members here who have travelled there. Good luck.

  • Ok thanks - a bit pricey for me! 🙈🙉🙊

  • Whereabouts do you live? Are you near an NHS lupus uk Centre of Excellence?

  • I went to Guys but was not impressed. Am in ESSEX x

  • Hi Lula76,

    Whereabouts in Essex are you based? There is the option of the other Centre of Excellence in London which is UCLH, or there is also Addenbrooke's Hospital in Cambridge which has an excellent lupus unit.

  • Thank you so much Paul!

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