What does it feel like to be in SLE remission?

Hi fellow Lupies :-)

I was diagnosed with SLE and mixed Cryoglobulinemia Dec 2011. I have had a pred 40mg initially then reduced to 20mg and up and down to 15mg currently and 2000mg Mycophenolate, with Placquenil 400mg. My white cells are always on the high side and lymphocytes low, and low complements. ANA reduced from 1:640 to 0.1. I am not yet in remission but wanted an understanding of what it's meant to feel like once the Lupus is under control and we are in so called remission. What is your quality of life like? what should i expect my symptoms on average to be? will i still feel exhausted? have joint pain? will i be able to work? go out for dinner even without having to do nothing the whole day! i am just trying to understand what my activity levels are likely to be in terms of others experiences. I have yet to find anyone in this country with Lupus and Cryoglobulinemia and am getting battered by the cryo at present due to the cold :-( Any advice would be very much appreciated. I don't have any quality of life at the moment but am trying to hang on to hope that i will feel normal again, well hopefully. I guess i won't ever be the same as i was, always on the go and working full time in advertising and athletic but any hope i can have would give me something to aim towards. Feeling a bit deflated today.

Thank you so much xxx

14 Replies

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  • Hiya love. Sorry u're having a bit of a crappy time at the minute.

    Lupus is different in all of us, so how it affects some people may not b the way it affects u.

    I went over 10 years without any problems at all, just minor blips here & there, it was almost as if I didn't have lupus at all.

    Now (had a positive diagnosis 4 19 years now), my lupus is 'quiet' again but I still have issues with joint, muscle, tendon, ligament & bone pain, fatigue, headaches & nausea.

    Yes, it's a pain in the arse & sometimes I have 2 change my plans cos of how I feel but it's amazing what u can get used 2 if u have no other choice.

    I have a lot of overlapping conditions with my lupus & I think in all honesty, most of the time it's probably those that cause me more problems than the lupus itself.

    I always say 'Yes, I have lupus, but lupus doesn't have me'. I think trying 2 keep u'reself in a good frame of mind helps & I cannot stress enough the importance of learning 2 'know' u're body & how it gets affected & reacts.

    Just take each day as it comes 4 the time being & don't push u'reself too hard or beat u'reself up cos of what u're finding difficult at the moment, things will get better ;)

  • Hiya, thanks for your support and advice, i guess it is different for everyone. Great to hear that you went for such a long time without any problems, that's awesome, sorry to hear you are battling through with fatigue and joint pain also. It's so important to keep your chin up though isn't it which i am finding a big challenge but one of the ways i won't let lupus beat me, even if it does try hard physically. i am trying to learn about what triggers my body to feel worse or more worse, but it's quite a tricky one isn't it. I do miss singing and writing music and playing the piano the most but i did discover i could draw after picking up a pencil recently and i had no idea where my new skill came from so have to thank lupus for that! something i never would have even considered doing before. I think also appreciating the tiny things helps too huh. I will hold onto hope that things will get better, thank you. I will hopefully be lucky enough to have a good few years ahead. Wish you better too :-)

  • Hi helz

    I agree with Sher, this illness is so different between each of us. I have no organ involvement but major fatigue. Whereas my friend has had heart & lung involvement, but has no problems with fatigue. You would think we had different illnesses if you didn't know better.

    Like yourself I am very limited by my illness. I still hold on to the hope that there is something, whether it be medication or dietary changes, which can make a difference & allow me a better quality of life. I used to enjoy playing the piano too, & still have a little tinkle when I am able. It's great that you have discovered drawing. I think the key is to find other ways of fulfilling yourself. They are not going to be what you once thought, when you were active & well. Different is not necessarily bad, though. I once read a quote that summed this up well.

    'Change is the only constant in life.'

    ... with or without lupus.

    Acceptance of our limitations is a big part of learning to live with lupus. But it's important that it's at a level where we feel we are not giving in too much to the big bad wolf. My way of coping is to belief in serendipity. There are many wonderful people I have met because of my lupus, that I am sure I would never of had the chance to get to know otherwise. Who else can say they have time to sit quietly & listen to the birds? Yeah, this can be frustrating at first. But when it's all you CAN do, you have to learn to love it.

    Who knows where your lupus journey will take you? But you can bet it won't be where you expected! So sit back & enjoy the ride, Lady. Laugh as much as you can. But cry too, when you need to. Joining this site has made me realise that we lupies are a tough, resourceful bunch who look after each other. So if you need us, we are here.

    All the very best. X

  • Hi Roobarb, it has amazed me how strong everyone is here and also how supportive. More so sometimes than people who aren't sick like mates and family i suppose cause we all have a bit of an idea of how each other might be feeling, despite our differing symptoms. I was diagnosed in NZ where i had been living for 6 years but felt very isolated and confused without a strong support network. I had to return to the UK as i was too ill to look after myself but since being back i met my partner, a physio who understands things as well as he can which helps, more so than my family who don't seem to really acknowledge it but i have met people who i never would have had the fortune to have met prior to my diagnosis and yes, you do have time to appreciate the finer things in life eh. The hardest part for me is the lack of control and not being able to support myself and make plans. I do miss my old life but the longer time goes on the more i am beginning to accept things as my old life becomes much more distant. I know i will return to New Zealand one day and that gives me strength and hope. Still can't get my head around that this illness will be with me for the rest of my life, how do you get your head around that? For now i am still holding out hope that the right drugs will help me to feel stronger and better and more like the old me. The fatigue is debilitating though isn't it. I can deal with pain but the fatigue and weakness is the worst. So great that you don't have organ involvement, though am sorry for your friend. I have vasculitis as well but just affecting my small vessels at the mo but not a nice thing. I live one day to the next and be grateful that i am not as bad as some people out there who are suffering so much more than me. Makes me think i shouldn't be winging about it really but its not easy giving into the disease. I have to learn to ride with it more i think.

    Take care x

  • i was going to ask you what you manage to do for work roobarb if you don't mind me asking? i have to think of a career change as i was a project manager in advertising agencies, long hours and quite stressful and fast paced no way i would last 5 mins now! my skills would be transferable but i get symptoms from using a laptop / computer now so can't sit on it too long. Do computers affect you too? x

  • Must admit I seem 2 b fine with computers.

    I worked (constantly running up & down in a hospital so very busy, demanding, tiring & stressful!) until I had a bad flare 2 years ago that totally floored me :( Don't think I could go back 2 that as have cns issues now & wouldn't feel comfortable being in a position where I'm responsible 4 other peoples health

  • Hi love

    Try and get out of any stress related jobs as I found that is what gave my lupus in the first place. Years and years of running 2 jobs alongside each other gradually triggered it and then when my dad died it finished me off. I am worried about my kidneys as they are hurting. Should I go back on hydroxi even though my eyes are suffering?

    Get an easier job and try to relax. I am still teaching fitness and pilates, it helps.

    xxx

  • No one could tell you unless in hindsight. We all go through each minute of each day hoping that the calm doesn't mean a storm is brewing, which makes it difficult to enjoy the calm. In hindsight I could say that 2 weeks ago I had 2 very good weeks, just very little niggles. But I didn't know at the time how long that was going to last, if at all. But it did. I'm now having other problems that got me visiting doctors, having more tests etc and I'm dealing with those as they come. I don't know how long I'll be dealing with this bout of symptoms but we all take it one day at a time. And we hope tomorrow we will be better.

    I wish you strength and courage to go through what's thrown at you. This must be the weirdest illness, so unpredictable that we feel under siege all the time. Sometimes we despair but mostly we do pick ourselves up and make it another day.

  • thank you so much for all your feedback,roobarb I will take some time to reply to your lovely message when I am feeling stronger so tomo hopefully :-) I am curious to know what meds you are all on and how long does it take to feel the benefits and capable of feeling human again if poss. Thanks lovelies xx

  • helsnz34

    I find that I do get ill sitting to long at computer. I work part time at home and luckily can do it at my own pace. I find that after about 2 hours I get nauseas kind of headache, feel a bit woozy and get nice red face. That means it is time to stop. Before I started feeling ill I was working 8 -9 hours a day as office administrator and most of that on computer.

  • Hello, I'm sorry to hear how it is for u and wish u all the best. I also hav lupus an cryoglobulinemia, but I really am not sure wot cryoglobulinemia is? I was diagnosed jan 2012 and hav only had 2 days when I can say I actually felt 'normal' its a constant battle with tiredness, illness and pain. I hav found plenty to read about lupus but nothing about cryoglobulinemia? I hate the medication and steroids and sometimes wonder if u would feel better takin none? My quality of life has gone downhill so much with weightgane, hair fallin out on top of everything else. I get fed up with puttin on a happy face when sometimes I just want to lock myself away. Sorry to hav a moan. Big hugs to u all x

  • Hi Keliie07. There is some information about cryoglobulineamia on the Vasculitis UK website. You can read it here - vasculitis.org.uk/about-vas...

    They also have a community on HealthUnlocked. If you join their community too, they may be able to provide you with some more information.

  • I have only been -1 for about 2 months now n even though I'm still in a lot of pain I have been taken off celcept so that has madea big diffrence

  • I to have Lupus , I also have Auto Immune disease along with frybro,Barretts disease, Arthritis Sclerderma, and they call it connected tissue disease . I don't have much of quality of life . I do work and that's all , I promised god if I can wake up I will make the best of it . so I got a job in a Walmart deli . yes I have a lot of bad days never knowing wen I'm gonna be down and if there is a tomorrow . but I'm raising a 10 ur.old g son and I do my best.

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