How good are we meant to feel again?

Hi everyone.

I am taking rituximab and reducing steroids monthly. I am feeling pretty good but just wondered if we ever feel completely well again on medicine and in remission.

I always have some sort of symptom still, tired, achy and brain fog.

Does anyone feel normal in times of remission without any symptoms?

Thank you

32 Replies

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  • I am waiting with baited breath. I haven't felt well since December 2012. And I have the same question...I have fingers crossed that folks are going to tell us things will clear up and we'll get our dancing shoes back on!

  • I feel about 95% of the old me most of the time. There are parts of my body that don't work the way they used to and days when I'm fatigued, but I'd say that overall I'm really well now on meds.

    It took about 5 years to get me here with lots of tweaks to medication, a good routine, a good diet and regular exercise.

    Don't give up on the hope that you can get better. Keep talking to your doctors to aim for the best life possible.

  • That's great lupylass. So glad you are feeling better. So positive to hear.

    Definitely feel better than a few years back but I'm struggling reducing steroids as I have been on them for four years so I think my symptoms now are mainly due that, feel rough every time I reduce down so can't get a real picture of how I feel. Joints feeling good though, before I couldn't walk properly so a lot of improvement.

    My doctor says the important of excersise too as it helps keep your immune system balanced.

    Thank you for your reply.

    Jo x

  • Hello Joanne

    Lovely to read you have had benefit from Retuximab but you ask a very interesting question about how well you can expect to be. I'm just wondering what dose of steroid are you on?. Well done for reducing as it can be very hard. I find it so and agree your symptoms now could be because your reducing. Have you been given a dose to get to?. Good luck with it all. X

  • Hi misty. I'm down to 5mg, they have told me to keep coming down slowly and hopefully get off them all together. Just seems like such a mission 😩

    Thank you 😊 xx

  • Hi Joanne

    Good luck with going below 5 mg. you've done so well. X

  • Thank you Misty 😊

    Xx

  • I too wonder that. I'm aware that not everything is due to Lupus; - but its easily been 5 years since i had a 'good' day. How much do I put up with & when do I start asking more medical help? I'm 56 & feel at least 70yrs old. Specialist said 'Clinically' I'm in remission but not serologically. Currently on CellCept 2000mg & Pred 5mg + Endep 20mg. Kaz x

  • Is a question I will be asking my consultant at my next appointment.

    Very confusing. Whilst feeling a lot better it's still never 100% and get bad days.

    Not sure I will be able to get lower than 5mg pred and does that mean the rituximab isn't working like it should be, felt good before reducing to 5mg.

    Jo

  • Good question Joanne: am going to enjoy following this discusion. Am so glad things are going this well for you πŸ‘Œ

    Here goes:

    After 3 years on my lupus treatment plan (hydroxy + myco + amitrip + prescrip topicals + antibiotics) in 2014, I felt so good that I began to imagine I was in pharmaceutically induced remission: all I had to do was comply with treatment & get regular monitoring, and ENJOY....in my 60s, I was feeling better than I had since my 20s in the 1970s...Then, early in 2015, rheumatology blood tests prior to starting IV treatment for osteoporosis turned up significant immunodeficiency which meant dropping hydroxy for several months during immunology investigations.

    That break from hydroxy saw various chronic symptoms & secondaries flare enough to re-orient me. Now I'm back on a full dose of hydroxy, feeling gradual improvements, but packing home emergency kits of high dose, long course antibiotics. I'm learning that, for me, pharmaceutically induced remission is precious and hugely life enhancing β˜ΊοΈπŸ‘πŸ‘.....but because my version of infant onset lupus went without daily systemic treatment for most of my 50 years, my multisystem debilitation has progressed to the point that even if my lupus went totally into remission, I'll need to continue working a repeat prescription list as long as my arm, and conscientiously & time consumingly lifestyle managing + complying with treatment plans for secondaries for ever & ever. And then there are the implications re the toxic side effects of the meds that are helping me so much.

    This past year has been a big reality check. I feel older, wiser and cautiously grateful for my good luck....I think I'm better at seeing my situation in perspective: thank goodness for this wonderful forum. And I'm more fully aware of the fine risk/benefit balancing act that is pharmaceutically induced remission. In my 60s, am feeling v grateful for what I feel is basically palliative care

  • It definitely is a balancing act. I remember years back I wouldn't even take a paracetamol for a head ache now I have a tablet box haha.

    I'm glad you are gradually improving. Wow that's a long time without any medication to help you.

    Am very grateful for the treatment I am receiving and grateful to be under such a great hospital Just think some times I expect a miracle from these medicines and That I will be like I was before lupus. πŸ˜ͺ

    Jo x

  • Yes...me too..have been ultra cautious about meds from childhood (ironically, it was exposure to the artificial oestrogen DES, prescribed to my mother for months to avoid miscarrying me, that probably is the most significant cause of my lupus). and I was raised by a health & fitness fanatic to lifestyle manage my health agogo

    My feeling is that this life I have now is kind of like running to hopefully stand still for a bit. I never thought I'd end up with regular monitoring from so many different hospital clinics...just keeping up with all that is like an endless marathon...but I am glad of it all: since 2010 the NHS is trying harder for me, so far (makes up for those decades of relative neglect) and both rheumatology + immunology are taking me so seriously

    I did have some meds to help me during my 50ish years in the wilderness, unaware of my early lupus diagnoses: various secondary multisystem conditions were diagnosed & given treatment plans, but the part played by lupus wasn't recognised or managed, hence the gradual general debilitation. I did have a series of severe, life threatening emergencies, which the NHS managed efficiently...but without spotting the lupus involvement. So when vascular symptoms got so bad that my lupus was discovered, I had already been working a long repeat prescription list for many years

  • Hi how I wish 100% was achievable on Lupus. Sadly I have so far not found this. There are fairly good days where the aches are less and you can do more than normal but that fatigue will usually get in the way at some point.

    I think there are ways to embrace Lupus rather than fight it & some can lead fairly normal lives with the condition but am not convinced re symptom free

    There are fairly good days, so so manageable days, & really bad days, trouble is the never knowing until you wake up what day your going get never allows you to prepare ;(

  • So true hollydebs!

    The unpredictability is one of the hardest things to deal with. Trying to make plans with friends and family is so differcult as you never know how your going to feel. I'm also trying to get back into the working world which the thought of scares me and I just don't know if I can do it πŸ˜ͺ also lost a lot of confidence on the way with being so poorly and get a lot of brain fog.

    Just learning not to fight it as much, used to get so upset but now try and listen to my body because if I don't rest when needed I will be in bed wiped out.

  • Good plan! When my first long phase off work happened in my 30s I felt as you've described (that was my first really bad flare of neuro cerebral symptoms). It was v tough: I'd worked so hard to progress my career...I couldn't see how to shift into a different gear and maintain the expertise...I felt all momentum & all confidence was lost. But somehow I managed to approach returning to work pretty much exactly the way you're planning to...and things worked out even better than I could've imagined all round. And I gradually shifted into working from home quite regularly, where I was able to work around naps etc.

    My boss & colleagues were supportive (even though no one knew the major reason for my dodgy health & unpredictability) and it helped that during the working week my husband lived in London. Another thing that made career more possible was my infertility (due to birth defects caused by that notorious artificial oestrogen DES (diethylstilboesterol...the same med the penal system gave poor Alan Turing as judicial punishment) which is also known as the 'silent thalidomide' because the defects are to internal reproductive organs...sorry for going on about DES: but it needs to be better known, and we DES children have a pact to spread awareness when poss). I am in awe of all the working mothers with lupus on our forum.

    As you can see, this subject is dear to my heart

    Am wishing you all the best...hope you'll keep us posted

    πŸ€πŸŒ»πŸ˜˜

  • Hello again Joanne

    It is so easy to lose confidence when ill for a long time. To help you see if you could go back to work you could try doing something on a voluntary basis. If it works it would give you such a boost. If it doesn't it's easier to give up. I've been away for over a year from my voluntary job, hope to go back as it helped give me lots of confidence which I've lost again!. Take Care.X

  • That's a great idea misty. Thank you. Might give that a go. Xxx

  • When I was diagnosed I received some info from Lupus Canada....they said there were basically three "states " of Lupus...flare, chronic and remission. I have heard of folks being in remission and I hope to be one of those people...but like you, even my good days involve pain, brain fog...etc. ...so I think that I mostly stay in a chronic phase with several flare periods. But there are days...one or two a month where I almost feel normal...like I don't need my cane...my memory is good and instead of pain...I have just a little stiffness...and I have to remind myself to not go overboard or I will pay in spades. But those few times are glorious. I hope you get to experience some of those days soon...I haven't had many in the last little while myself but always hopeful :)

  • Thank you hockeymom12.

    I think sometimes I blame everything on lupus too, hard to tell the difference sometimes between a virus or a bug or something. Feels so similar to flu etc.

    we have to appreciate the good days and embrace them 😊 and have to stay hopeful.

  • My daughter has been feeling what she thought was normal for about 3 months and then recently 'supernormal' i.e. brilliant - back to her pre-Lupus (a year ago) state of health and joyfulness. As well as the meds - hydroxychloroquine - she has done lots of other things to support her body to heal itself, as her intention is not just to manage Lupus medically but to do whatever she can to properly heal, or go into long-term remission.

    Lifestyle changes were to follow a completely gluten & dairy free diet, avoid refined sugar, avoid beef (which seemed to trigger symptoms), use filtered water, use 50+ sun block, plus do a few other things to support her mental and 'energy' state (had some counselling, tried some kiniesiology, etc.). So she was actually feeling brilliant.

    BUT... an extraordinary thing happened in the last couple of days. She started a new job on Monday, testing grain in a lab. It's based in a big barn in a field (we live in the country) and on the first morning she was sifting barley and doing various tests on it. In the evening she started feeling sick and physically heavy. Yesterday morning, felt heavy but OK and went in to work. She was doing data-entry but in the same barn, also sweeping some floors. She felt fine in the afternoon but in the evening, at exactly the same time as the previous evening, she started feeling sick, but this time worse, with aches, very sore face (!) and other flare symptoms. She has just gone in to say she can't work there any more!

    So another job bites the dust (literally), but her health is more important.

    BUT WHAT THIS MEANS is that gluten (whether eaten, handled or inhaled) DEFINITELY causes symptoms for her. I don't think gluten was an original trigger, but she is now super-sensitive to it. It shows that the food connection is very real.

    By following an extremely good diet (as above) as well as the medication, she managed to feel 100% fine. Ingesting gluten brought the symptoms back. Interesting!!!

  • Hi.

    I think sometimes if you've been on higher doses of immunosuppresants for a longish time and then have to taper down - that just by itself, without the lupus is absolutely exhausting and sometimes mind warping. When you're in this state its easy to kind of loose contact or hope of ever feeling normal and healthy again.

    I've had Lupus for 33 years. In between flares I've felt pretty healthy and happy.

  • Wow yakamalayo that's fascinating!

    Sorry to hear that it's effected her like that. πŸ˜ͺ

    Has she been tested for celiacs disease?

    Was tested for that which came back negative but brown bread especially does not agree with me.

    Hope now that she's not working there she will get back to being well again.

    Jo x

  • I would love to say that I think that feeling 100% is acheivable for all of us lupies. But unfortunately just as each one of us responds differently to treatments and have varying degrees of symptoms I think the same goes for feeling good and remissions. I hear some people talk about having remissions but I have yet to experience one. Since becoming really ill with lupus it has been a constant struggle for me. For the first time this year I was starting to see improvements after receiving Benlysta infusions along with staying on pred and plaquenil and NSAIDs. But about 4 months ago I was having a few days each months that I could vacuum, do a few little normal chores and feel partly human again. No where near I used to be but was just so happy to be able to do a little again. Then I went into a terrible flare and haven't been able to bounce back since. The infusions took me back down from being terribly ill but it's like the flare caused a permanent progression or something. And enough damage to my veins that I have to get a port put in to continue treatment. So not looking forward to that surgery. Just feel like I don't want to go thru anything that's going to cause more pain. Now we are trying everything to get me back to functioning. I would be happy to be able to control things to the point of being comfortable most days and having a couple hours a day that I am able to do things without then ending up in bed for days. This past week has been terribly bad and I just so wish they had better options for treating us. I truly hope that you reach your 100%. I do think after being on steroids for so long it's hard for our bodies to adjust without them but I'm unsure as to if we can feel ok without them. I know that I too start doing ok when I try to taper but then after I reach a certain point I have to go back up. Would so like to get off of them as they too cause so much damage and none of us like the changes they make in our appearances. 😁 Sorry for the long reply, I guess we all have a little we want to share. Praying for you to reach your 100% and be able to get of steroids!!!!

  • Hi Terrier-lady.

    Wow it sounds like you have been through a terribly rough time 😟

    Have the doctors suggested trying a different medicine for you if the infusions aren't working that well?

    Good luck for your operation, anything on top of what we go through daily is just too much isn't it?

    Thank you so much. Just cannot see being able to get lower than 5mg of steroids.

    We have to keep fighting on best we can and to talk on here helps so much.

    Big get well hugs xxxx

  • I am looking forward to that time of remission although for now it feels far fetched for me i can only pray and hope that my lupus goes into remission. I also thing it will be good for u to take things dont get carried away by how good u feel. Try and do everything with caution and rest properly, because the major cause of inflammation is stress. I will u well take care and God bless.

  • I think that's the scariest part of all this is when and "if" we can ever feel normal again? I've been going through a long stretch of fatigue and then a full blown flare this last week end. My body has hurt from head to toe. The heat bothers me the cold bothers me. Doing to much. Not moving enough makes me stiff and hurt. It's like an endless battle, I never feel like doing stuff I always have to force my way through stuff! That's not me at all !!!! But it's my reality now ! So as for me I don't see ever feeling normal again !!!!!!!! But I pray for a miracle all the time ! I think that's my only hope.

  • I agree cristylee, it is one huge battle.

    Not sure I will ever feel normal again either but like you pray for a miracle. I sometimes get a glimpse then fatigue and aches are back.

    We have to stay hopeful 😊 xxxx

  • I was diagnosed with lupus in 2006 but was told I had ME from the nineties. I went into remission for about 6 years until I was diagnosed in 2006. I went back to full time paid work in 2004 and the flare started along with all the add ons including lung damage.

    I am also taking Rituxamab i have two infusions but haven't felt any improvements yet.

  • Hi Maureenpearl. I didn't feel benefit from the first two infusions for about two months but it can take 3 months to begin to work, hang in there. I actually felt worse for a while which my consultant said can happen initially.

    I hope you feel some benefit very soon and get some rest from it.

    Jo

  • Thanks joannebond360. I'm looking forward to feeling good soon xx

  • Just saw your msg from a few days ago and it got me wondering if I may just be a lucky one. I've had lupus for 33 years and the first few were hell, nothing worked and the pain jumped around and fatigue all the time. After about the 5 years of trial and error of meds, and going through cyclophosfamide for kidney involvement which pushed me into remission in the early 1990's , I feel pretty good. I cant remember the last time I fell to sleep during the day unless I've got a cold coming on which is very rare at that. I use to get sore wrists at the end of my work week like my body telling me that it was enough. ( I practiced in the dental field for 20 years. My specialists told me I'd never use my hands again when I was 1st diagnosed in 1985.) Your symptoms seem to change. You learn how to read your body and you push yourself somewhat and challenge what you believe. You may flair on occasion but I live a happy life, usually no pain unless I don't look after myself. Sleep for me has not come easy, I do sleep better after being taken off hydroxy chloroquin (my eyes were doing something weird after 10 years of the drug). I do have some low blood counts going on over the last few years and alot of bleeding from pre-menopause so things are probably going to change for me in the near future but I have a wonderful husband and 2 dogs that keep me healthy, happy and very active. We Lupies tend to have to prove ourselves when it comes to doing things so we appear normal. I may have Lupus, but I am like everyone else and will fight till I no longer can. Stay positive. laugh and smile as much as you can, it works, it has for me.

  • Hi Roanna

    Thank you for such a lovely, positive reply 😊

    I am so happy things are going well for you and you are feeling good, really hope it stays that way for you.

    You are very right in what you say 😊

    Jo x

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