Flu symptoms?

I have sle and have managed well for about 5 years with occasional flares. But for the past 5 months I have been in a constant flare. And the past week I feel like I have the flu. Energy levels are nil and I have constant headaches and sore throat/ear ache.....anyone have any advice on how to move forward from this? IM feeling like I can't go on like this anymore....

23 Replies

  • Emma So sorry to hear how bad you are feeling. I had a bad flare almost 2 years ago and have never completely came out of it. I went off my plaqinel for 2 months which I believe started the flare up. I am down to 2 mg of prednisone a day lowest in 2 years and feel like I have a flu with no energy and bodyaches. I do not have constant headaches and sore throat but often. Have you seen your doctor? What do they say? I know it is hard and hopefully your doctor can help you but you are not alone. I was diagnosed 5 years ago and it has been a rough ride.

  • Thank you! It does get very lonely sometimes, especially when everyone around me is living life and I am sleeping mine away. I am seeing my consultant next week, and hopefully he can help - although the last time I saw him I was put on new meds (azathiaprine) but had to stop them as the side effects were too bad.

    How did you know it was your meds that triggered a flare?

  • I had been taking plaqinel for a couple of years and did not feel like it was helping much. I quit for 2 months and got so sick all of a sudden. It came on fast and I ended up in the emergency room. I was so weak I could barely stand. I got pneumonia and severe asthma attacks. My eye lids and knuckles were purple. My body hurt everywhere more than it ever had with muscle spasms. It was the first time I got the butterfly rash. My mouth and tongue felt like they were raw and had been burnt and my eyes hurt to open. So many things and my blood work showed my inflammation was very high. I was given breathing treatments and put on 60 mg of prednisone. When I saw much Rheumatologist the first thing he asked me is if I was taking my plaqinel regularly and I had to admit I had quit. He told me I had to take it everyday and I did over time the prednisone was reduced and I got better but it has been almost 2 years and I have never been as well as I was before I stopped it. I am now on 2 mgs a day and the plaqinel and though still tired and stiff sore muscles and joints I am back to where I was before going off the plaqinel. My Rheumatologist watches my blood work closely and said we could try Imuran but right now I want to stay with prednisone. I have to stay under 5 mg or we need to change. I might try something new but I am not ready. I don't ever feel good but I know now how bad it can get so I follow my doctors instructions. You are not alone most of my friends I hardly see every one moves on with their lives and I sleep and spend so much time alone. I have my cats and bought a parrot and she is wonderful companionship. She loves being with me all the time and doesn't mind sleeping a lot. My life is so different than before but I try to make it the best I can with what is and what I can do. I also had spine surgery 5 months ago so that has also been a challenge but I notice I do feel better when I get a lot of rest.

  • I defo won't be coming off my meds then, I'm on prednisone and have been for a little while, hopefully next week at my appointment I will get the ok to stop them, they don't seem to be doing anything anyways.

    i know rest is the answer, I just get very frustrated that I'm 27 and am sleeping my life away. This is the longest flare I've had since knowing ive had lupus and I get angry at the wrong people and probably need to explain how im feeling a bit more...how did your family react to you?

  • At first my husband was supportive. My mom and step dad both passed away in 2004. I am an only ly child with one son and I am older than you. I am 52 now and was diagnosed in my mid 40's but looking back I was sick and had symptoms at about 35. I am so sorry you got this so early. My husband and son now honestly seem tired of my disease and I get that because I am tired of it also. No one in my small family understands how hard it is. I saw my Rheumatologist today and he said if I feel better taking 2 mg of prednisone that is ok. He said Imuran nor methodextrate help much with the fatigue. Have you tried b vitamins or vitamin D? I got the ok on those and they seem to help a tiny bit but I get tired of taking pills so never take them regularly. Have you ever been put on plaqinel that does help keep it under control in many people. Prednisone makes me feel like super woman in higher doses but you can not do that all the time unless you have serious problems. Ug

    Yes I get irritable and take it out on my husband and son at times but sometimes it is because they are not being helpful or understanding of how hard I am trying to do the best I can. You are not the only one there either. If they do not understand have them go to your doctor appointments. That helped my husband understand how serious this is.

  • I am on presnisone - 10mg at the mo, i take quinoric, and pain meds daily - also i take vitamin D - im good at taking them and never forget.

    The steroids this time, even at the higher dose of 20mg never gave me the boost they did in the past - massive disappointment for me this time. i want some magic energy pill...im falling asleep at work, not good, although lucky I could get to work today with the way ive been feeling this past week. lots of make-up on today - and as everyone always say - you look fine, grrrr, feel like ive been hit b a bus, but OK, thanks haha.

  • Maybe they will find a different medication that will help at least there are more options now than ever before. Yes if we were fighting cancer it would be different huh? I know my x Co workers thought it was in my head and I was lazy even though I was a top employee for 7 years before I got sick. It is a relief to be disability retired now but I am 52. I am hoping when the nerve from my spine surgery gets better I can find something part time or volunteer work because I want to be a part of. I remember the work sleep days that was all I could manage and it was hard. When you feel alone come to this site this is the only place I know of to go where anyone understands. I have a hard time getting on to the site Ros tells us about but she is awesome. She is very informed and I get so much information from her.

  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    I am very sorry to read how unwell you are currently. I think you need to go to your doctor and then ask to see your lupus specialist. Your GP can run a series of blood tests so that your lupus consultant will have them. However, blood tests may not show anything remarkable. Indeed, many patients report frustratingly their blood tests are "normal". This does not mean you are not having a flare and sometimes the blood tests need to catch up.

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    With good wishes!


  • There are other drugs that are helpful. In some patients who have a defective enzyme, AZ is unable to be excreted via the kidney and this leads to the patient becoming very unwell, which was the case with me. You should be able to discuss with your specialist these alternative drugs, depending on your symptoms.

    I wish I could say that it is unusual for lupus patients to feel alone, but unfortunately, this is not the case. It is very important that you can talk to other people. As Atibrat says: you must listen to your body and rest other wise you will feel even worse.

    It is understandable to feel envious of other people who seem to be able to do what they want, but you cannot. What you may be experiencing is part of a long grieving process. It is far better to be able to talk about how you are feeling and if this is what you want to do, please register at the LuPUS Message Board.

    With good wishes,


  • thanks ros. i know i have to listen to my body - it just gets me down every now and then. Back at work today and being around normal day to day things - although needing to sleep already - coffee just doesnt help - infact it makes me feel quite sick - any other pick me ups I can drink instead - berrocca doesnt work for me either? thanks emms

  • Emms...this was happening to me a lot. I always felt like I had the flu, and I started to reAlize something was wrong. How could I get swollen glands in my neck every two mins. It seemed. Anyway, I woke up the other morning all achy thinking I had gotten the flu from someone at a party. Took a vit c, and was better immediately. Something off in our bodies. Probably all the stupid anti biotics I have taken every time I was sick. Just needed vit c. Maybe it was a fluke, but it has been working for me anytime I start to feel under the weather. Hope you fell better!

  • Really?! What vitamin - what dose? Or did you just drink fresh orange juice?

    Willing to try anything and everything at the moment...

  • Serving size on bottle says 2/day...240 mg vit c...there also happens to be 20 mg rose hips, and 10 mg sodium. I don't know why it works, but it does. Gets rid of my chronic sore throats too. I am experimenting with turmeric right now to reduce inflammation in the body, my ears hurt often. Not sure it's doing anything. Hope this helps you. Just don't overtake vit c. I saw some one on here say too much vit c not good. I take the recommended dose on the bottle. Vit b complex suppose to be good immune supporter too, but I worried it would boost immunity too much, which is part of our problems. So, I only take b6 and b12. These are water soluble, meaning u piss them out, so you can't overtake and hurt yourself. Take care, and hope u feel better

  • I wonder if you can have b12 jabs, im seeing my consultant next week so I'm going to ask...im back at work today - 3 hours into my day and already feel like i need to sleep. I want a quick fix, although not really possible in out state I suppose. I will defo get some viatmin C too, I already take viatmin D among my usual pills. thanks for the advice x

  • Emms - I hope Natura does not mind my emphasising the importance of talking with your doctor before taking anything. As Natura says, taking too much Vit C can be problematic. Some lupies have a low Vit D level so it is worth while asking about vitamins but again, you must be guided by your doctor. Your blood tests should indicate whether you are anaemic or need Vitiamin B, B12 or iron supplements.

    Some lupies have been so understandably desperate that they have taken other herbs etc believing that herbal products are natural and cannot be harmful. That is not the case. There are some Chinese preparations that can be very harmful to lupus sufferers who have kidney involvement.

    Having a good diet is very important but when we are flaring, we may need additional help from our doctors. Nevertheless, always check with your consultant and I hope you have a good appointment nest week.

    With good wishes,


  • I know the doctor runs blood tests, but more recently, I have not been given a copy. He primarily comments that there is a little protein in the urine, the c-3 is a little off the c-4 is ok or something like that. Each time a complete panel is ordered, does it show VitD, VitB6, B12 and the rest? Some of these vitamins are readily available in foods and I, we, could increase intake. Or if the marker is a little high, then decrease the intake.

  • It is not surprising you can feel "down". In fact, you would not be human if you did not have a wide range of feelings including depression and/or anxiety. We live with a painful, unpredictable condition that can strike any time, while other people seem to get on with their lives and do all the things we were once able to do, but cannot.

    This is one of the reasons why LUpus Patients Understanding& Support (LUPUS) was established in 2000 and why the LuPUS Message Board exists.

    All of us need a private space to talk to others who can empathise with how we are feeling while struggling to live a good and fulfilling and loving life.

    You are not alone.

    With good wishes,


  • Thanks Ros...I am trying to snap out of this lull and think positive...i have to make the changes that will make me feel better, and i guess I am lucky i can go to work and sometimes the gym :-)

  • Forgive me, but this is not about trying to "snap out of it" and "think positive" as if you are a "failure" and thus "make changes to make yourself feel better. If there was a magic wand which took away lupus, you would be feeling as you do. The fact is you have this condition and while this should not be your identity as an "ill" person, this needs acknowledging. I think society can make us feel "ashamed" because we are ill and this means trying to hide the fact which generates even more pressure and anxiety because we cannot put our bodies through what we once were able to do.

    You have every right to feel what you do and more importantly, I think you also need a place of safety where you can really talk about what you are feeling. This is not about feeling sorry for yourself. Instead, this acknowledges you are having a difficult, if not traumatic time. It means mourning what has been cruelly taken from you and working through everything that has happened. This is not about maladaptive thinking, but acknowledging and working through the pain and suffering. It is a kind of bereavement which is denied by those around us because other people then have to realise they too can be struck down with an illness that is totally out of our control.

    Whether you want to talk more is entirely your choice, but you are not alone in the feelings you express.

    With good wishes,


  • Again I have started my day feeling very poorly. Am at work but its a tough day - and will try and push myself as I am seeing a friend tonight - I want to be normal - just for a day grrrrr...insert very angry face here...

    I know I cant do the same as others, its just very frustrating.

    I have had a nice dose of vitamin C today - squeezed some oranges - hoping this will help after Nutura's advice on vitamin C.

    And tomorrow will attempt the gym, knowing that I can have a sleep after.

    Ros - I think for me I have to think positive or I get very down. your right in that sometimes i compare my to others and feel down like i am a failure and must stop doing this.

    I am thinking of going to a support group or possibly for some counselling....do any of you do this too?



  • I have sent you a private message. LUpus Patients Understanding & Support (LUPUS) was established in 2000 to provide online psychological support.

    IMHO, psychological support should be part of the overall care for people living with a chronic condition.

    With good wishes,


  • I held a very demanding job in community mental health for 12+ years. I was well respected in my work, did my best to decompress, water aerobics or yoga. Well, I saw a different rheumatologist, who felt I was doing very well on 200mg Placquinel and 2 mg Prednisolone. On my 2nd time seeing her, she suggested taking the Pred every other day. I don't know why I didn't have my guard up. I started doing as she suggested and was in the hospital about a month later. All this to say that yes, there is a time to see a therapist. I felt my world was turned upside down. It also is a fact that I now have to carefully consider physical limitations. I currently see a therapist. I find this website better than support groups I have tried. In the US, they seem very focused on the newest treatments available, not support. I may try one more. A friend of mine knows I have lupus and she is on the mayor's council to improve community offerings to those with illness, issues. She has fought for jobs all her adult life as she wears hearing aids.

  • I have sent you a private reply.

    With good wishes,


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