lupus or other condition

Hi been unwell for the last 7 months, had severe chest infection treated with doxycyclin, then had collapse episode and weakness/pain in left arm and leg, and also non specific chest pain.

full workup at a/e ? viral and sent home all cardiac tests fine, had ongoing "discomfort" in chest and another increase in symptoms so returned to a/e again all tests fine. week later had severe episode and this time was admitted with ? viral pericarditis again all cardiac tests fine, ongoing lethargy and muscle pain/weakness like severe flu. had course of non steroidal anti inflamatories and symptoms where much better, chest pain mostly all went, have had since then headaches, tingling in arms, rigors for no reason and major increase in blood pressure when symptoms severe ongoing lethargy and muscle pain.

now have chest infection and on doxycyxlin again- spasms much worse. past history of migrains and hypertension. family history of arthritis and ms. good relationship with both gp and consultant, also im a/e nurse. so could this be lupus, any thoughts or advice greatly sought

16 Replies

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  • Lupus is very complex, your symptoms could be lupus or something else. Have you asked the consultant/gp there thoughts? I had an attack of pancreatitis with no explanation and while I was told this would not have been caused by lupus, this is how my journey began on discovering all the problems I have and going back over time I think I've had lupus n sjgrens for at least 6 years. A very common situation it seems.

    Good luck with the investigations x

  • Hello Scoobydoo1 - I'm afraid I can't answer your question. Lupus is notoriously difficult to diagnose, and even specialists struggle, so I would be foolish to guess. It can onset suddenly or over a period of years. The first symptoms you know about may be joint pain, fever and fatigue, or they may be something else.

    Blood tests - a full blood count - and tests for antibodies to your own dsDNA (among which there are some specific markers for lupus), will guide your doctors, but even then can be misleading. Some people can have some of the markers for lupus without having lupus. Many people get diagnosed with something else (another autoimmune condition) before the 'definitive' finding of lupus.

    I really hope that you don't have lupus. There are many horrid and incurable things that you might have, among which lupus can be one of the more unpleasant, life threatening and least understood. From where I stand, I'm hoping that you eventually find you have something (or have had an unlucky series of things) that is entirely curable, not life threatening and better understood than lupus.

    Good luck with a diagnosis!

  • thanks for the replys, chris, yes i have asked the consultant and my gp and they have both been very honest, they dont know what it is hence i have had exercise treadmil test, echo, more blood tests than anything, nerve conductivity test and going for barium swallow next week. I may be putting 2 and 2 together and getting 6 but in 98 i had to have innoculations for my job and soon after that had lethargy, abdominal pain, chest pain, joint pain, my right calf was like it was stone, heavy and cold then had diarrohea constantly then developed laryngeal spasm that lasted constantly for 3 years then the symptoms eased off considerably but never felt exactly 100% since have had little "flare ups" with chest pains swolen joints and even diagnosed with heamiplaegic ocular migrain which is interesting, due to my job i have put the lethargy and pains down to that. and never got any formal diagnosis.

    one thing which is good is that my consultant and gp is very receptive and helpful. one question I would like to ask is would I have been able to have trained and run in a 5k with lupus, i did have problems with my back and had to see a physio.

    maggie s- I hope to god i dont have this, but at least I can go back and point them towards this to rule out, both gp and consultants have said its deffinately of a viral nature due to the spread of symptoms.. will let you know what happens, many thanks.

  • Hi scoobydo, your mention of vaccinations for work jumped out at me. Myself, & 2 other members of my local lupus UK group, feel we had some reaction to Hep B vaccination which resulted in the development of, or worsening of our lupus.

    Personally, I don't believe it was this alone that caused my lupus. I've had Raynaud's, & some other classic symptoms all my life. But I do think it acted as a trigger, possibly with other things. So this might be worth discussing with your doctors. I wonder if they could give you lower doses of vaccine, over a longer period of time in future, to prevent this occurring again.

    Regarding your 5k run, lupus experience & symptoms vary hugely between individuals, & also can go through remissions & flare ups. As previously mentioned, a rheumatologist would perform ANA test other blood screens, which may give clues to this being an auto-immune illness. But diagnosis of lupus is rarely straightforward.

    Best wishes. X

  • funnily enough mine was the hep b inoculations, and after blood tests to se if im still covered, i still get asked for top ups but I have devised a disclaimer that simply states if they give me it and I have reaction I will sue them for as much as i can get, and they take full responsibility.. funnily enough no ones been that brave. i do think that i have flare ups and remision phases, like you i think it kicked off after the hep b, food for thought, now need to update my illness diary from 1998, many thanks.

  • I also have trouble maintaining my immunity. Years ago, a practice nurse advised me to have yearly checks on this. But now the testing is done in the hospital, they don't seem interested. Great idea about the disclaimer. Btw do you have allergies?

  • only alergy is to penecillin- full anaphylactic shock so avoid it like the plague lol. thinking about it i react with loads of medications and innoculations, my b.p medications amlodipine and lisinopril gave me palpitations and joint swelling, had propranalol back in 99 and droped my heart rate so low was rushed into resus after collapsing (30 beats per minute), tetanus sent me into hyperthermia(temp of 41.2 another admission), more i think about it, been ill realy for a while but just got on with it, just like you guys.

  • Wow, you've been through the mill! it's a good thing you are an A&E nurse & know what's going on.

  • Pericarditis in itself should raise question marks, let alone the other seemingly unrelated symptoms. A diagnosis of viral pericarditis is usually arrived at in the absence of any other symptoms, most of the time, otherwise it suggests lupus and your GP should refer you to a rheumatologist. Have you asked your GP to test for autoimmune disease and Hughes Syndrome? If not, do insist. It might not be a panacea but it could put everything into context.

  • thanks purpletop, the more research i do into this, such as talking with you guys things are making sence. like i said I have a good raport with my gp and also my medical consultant and I will be asking for these tests/ referals when i see them, to be fair only saw my medical consultant on the 11th jan and will have had the nerve conduction study and barium swallow within 4 weeks so actually think im doing well, realy greatful for the care recieved so far and also the advice I have been given. thank you.

  • Hello

    As others have said, I'm nowhere near qualified to diagnose, just thought this might be helpful if it does turn out to be lupus. I have lupus and had a course of tetracycline a few years back, it sent me into a horrible flare. My consultant told me any antibiotic in the cycline group (doxycycline, oxytetracycline etc.) goes very badly with lupus because they bind to any natural steroids in the blood, making them useless, so makes lupus worse.

    Hope this may help.

  • thanks green_eyes, the doxycycline have helped with the chest infection, but have had the worst full body tremmors, leg pin and headache since started em.

  • not quite got a leg pin yet, ment leg pain lol

  • Hi Scoobydoo1, I have lupus and am allergic to penicillin so I was prescribed Doxycyline. My whole face swelled up and my lip was tingling and I did feel heavy all over. And ended up in A&E because they thought my throat was going to close. So yes it is very bad for lupus!!

    I hope these are all unrelated symptoms for you because none of us on here want you to have lupus.

    Hope you get to the bottom of it.

    :)

  • My daughter is not diagnosed yet but I stongly suspect she has Lupus ad I do. She was prescribed Doxycycline last week and had a severe allergic reaction. On looking into it the antibitic is contra-indicated in Lupus. I myself am allergic to Septrin which the same group of medicine. Don't take any more of them and go to see your GP. It isn't diagnostic but with your symptoms and the apparent allergy I would ask for more comprehensive testing for Lupus

  • UPDATE:- spoke to my g.p earlier today and have been for the blood tests for lupus, arm is sore as hell now, just awaiting results. doxycyclin finished I did have increase in pain and full body shakes, but chest infection resolved. once again THANK YOU all for pointing me in a direction, not sure its a good one but better than some of the others i could have.

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