When NOT in a flare, do you still have residual symptoms?

I'm due to see my rheumatologist on Friday to asses how I'm doing. I've been on mycophenolate (CellCept) since June and although symptoms have improved a lot in the main, I still have daily tiredness of various degrees (ranging from slightly sleepy to exhausted), muscle and joint pain here and there (although not consistently), hair loss of various degrees (from handfuls to few hairs on the comb) - just not as bad as in a flare. Blood tests are all within range (other than raised liver function tests but I very rarely have those normal).

So I don't know what to say to the rheumatologist if asked whether I think MMF is working. To my mind, it is working to some extent but not fully, given that I have few residual symptoms still.

From you're experience, when you are NOT in a flare, do you have a symptom free life?

I'm thinking that maybe I am too optimistic about what the meds could achieve.

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38 Replies

  • I can only say how it is for me purple top. I can't remember when I was last symptom free. Albeit minor ,I am reminded every day by something like you. I have had to stop meds in the past and can only say for me, I realised how much they did help as they started to leave my body. I worry when I see rhuemy that if I say I'm much better, they will say I don't need to come back for a year! Is this your concern? Of course I don't lie to docs, the bloods will tell all anyway.

  • No, my concern is that he will either raise the dose unnecessarily (I don't mind an increase if it is justified but not as a stab in the dark), or move me onto another drug that could have worse side effects. I'm seeing him privately, so timing not the issue.

    Maybe I'm striving to achieve the impossible, which is why I'm trying to find out by seeing what experience everyone else had.

  • I would stick with it and see how your days cycle and how many days you feel are manageable. I have been talking to someone recently about 'managing' a chronic illness and how I'm never without the disease and how hard I find this. I am trying to come to terms with that, as I think if I can get my head around it it will help me. I don't think from the reports here we can be symptom free but we also should be able to live normal lives.

  • Hi purpletop. What a brilliant question. I have been on methotrexate for 8 weeks and although like you feel so much better and actually have really good days, still get tired and joint pain but no where near before starting. I used to be bed and sofa bound even in between flares but now I'm not so very happy for that. Get achy days too and the sweats come still occasionally. Not sure how good the meds are meant to make us feel.

    Jo x

  • It is a question on my list for Friday, although he did say that some of his patients don't see him for years because their lupus has been managed down. I wonder.

  • Like you I don't want meds increased unnecessarily due to the damage they can also do. I think that we will always have residual symptoms in some way or other or maybe I'm just a bit more cynical that I would have been before this condition. I wish we could have Benalysta over here as from the lupus and me facebook comments it seems to be a good drug.....I think it will be the costings. Here's hoping.

  • That's a good point Jo as Ive been on methotrexate since end January and still have symptoms but when I think back it was impossible to go anywhere before whereas I can do things now albeit in a planned paced kind of way. I keep a diary and never try to overload now and keep a few 'free days' and plan on the other days and just keep fingers crossed that I'm ok that day. So it's better but not quite 'normal'. What was the life like where we could just get up and say Oh think I will go shopping today, or just doing something impromptu. Still grateful for the small amount it's doing but it still has to be managed. x

  • Sorry for misunderstanding. In my experience any new meds are adjusted accordingly, but regular bloods must be done to monitor for side effects. In my past, unless any bad reactions, 6 months is still only a trial period for a new treatment. I must say I have not been on your drugs though. So again I could be talking out of turn. Good luck Friday.

  • I'm coming up to the 6 months mark, which is why we will be discussing it - my blood tests have only been out of range at the very beginning but Plaquenil brought them into line. That didn't stop the symptoms nor the flares from happening and I'm fortunate that my rheumatologist doesn't solely rely on blood tests, otherwise I will feel much worse now! Thank you for your input, there is nothing out of turn about it.

  • Sounds like me ...raised crp at the beginning, continuous ana positives but it is being managed with methotrexate (weekly) and placquenil daily too. Still less intense flare ups though and residual symptoms daily. I keep a diary to share with rheumy. Mine said at least another 18 months on methotrexate and to come off I would have a big flare up......how do they know though? That's always the worry in the back of my mind, eg: Is it the right drug, what damage is it doing to internal organs and is it worth staying on it? I do must these are all daily questions .....guess I have too much time on my hands to think now lol x

  • You will have to post what he says, very interesting, would love to know.


  • Sure, will do.

  • Hi Purpletop - So glad you posted this. I have often asked myself this question. I never am sure how to answer "how do you feel" because it's all relative to last visit. Often I don't mention issues I've had because somehow they don't get to the surface when in fact they have been really debilitating. Often I don't mention because I know all he can do is raise dosage etc.

    I have for many years kept a symptom diary so I can look back and keep tabs on how I feel each day but recently I started putting a numeric number on each day (1-10) just marking how I generally felt. It has really helped me because I can appreciate the days that are pretty good and keep track of how often days are worse. I am rarely (never?) symptom free but there are days where I feel good despite itchy rash everywhere or my only symptom is hip pain / dry eyes and I can cope.

    Like you I'm on Mycophenalate + Plaquinil + low dose Predinisolone. I am trying to taper off the steroids (my suggestion) because I hate being on all of it and unsure how much help it's providing. I think we have to keep having monthly (ish) blood tests on MMF? But I am seeing my Rhema. only when I feel we need a review or things get really bad.

    I'd love to hear how you get on. Take good care.

  • Shannon - I was on the same combination and took my last prednisolone on 8th March. It was REALLY hard coming off them after 6 years, and I felt like a monster (angry, emotional) as well as being stiff and very tired for a couple of weeks after each drop in dose. After stopping it took about 3 months until I could begin to feel that I was in any sense over the,. I am saying this to try to encourage you to stick with the dose reduction even if it is horrid. It's SO much better to be NOT on steroids and it will take a lot to make me take them again......

  • Thank you for this encouragement. My rheumatologist originally dropped me down too quickly and I had a really bad reaction - went to the GP and she slowed it down and it's going much better but I'm taking it very very slowly and hope to come off of them completely mid next year. We'll see! I really appreciate your reply!

  • Agree this is an interesting question, keeping a diary has been helpful as ShannonB says it maps the ups and downs. I suppose it comes down to can you manage the life you have on current medication. My GP say lupus always there! and seem to suggest I cut back activity - I am a teacher - and cut back drugs. Consultant say you want to be active now and what I take is OK! In the end its up to me. Bloods can be near normal and I can be in pain and exhausted! Feeling well is always relative for us isn't it? At appts I name the current symptoms and drs can decide if any need further investigation. But in answer ...never symptom free, some always there some new ones pop up to surprise me!

  • great question, purple top!

    thanks to all for these great replies

    this sort of discussion is "feet on the ground" stuff"....realistic.

    i am about to begin mycophenolate treatment, so i am getting my head around how big the benefits could be - what to expect...including side effects... AND more than anything, i'm wondering what level of stubborn lingering and flaring symptoms i'm realistically likely to encounter. so, this discussion is timely for me!

    i'm 60 and until 2 1/2 years ago had been unaware that i was diagnosed with SLE as an infant & teen. apart from severe flares and secondary conditions, i have been conscientiously lifestyle managing my version of SLE all my life with some success. but 2 years ago the progression of my version of lupus was advanced enough for re diagnosis with SLE, mainly based based on symptoms and history. so, i've been on plaquenil with no side effects for 2 1/2 years and it is great for me, but only helps so much. during this past year, i've been allowed 3x 10mg 4 week prednisolone tapers with hardly any side effects. these low dose tapers have been great for me too, but my rheumatology clinic doesn't want us reliant on daily steroids. i'm now being told that my symptom pattern indicates active inflammatory process, so it's time to add myco to my treatment plan: "suck it and see". i'm keen to try myco, but i have few illusions about how symptom & side effect free i'll be....and on top of that, i can't help wondering how all these meds will interact and how their interaction will effect me....and i'm telling myself: hey, in the past 2 1/2 years you've felt better than you have since your late 20s.....let's see if you can grab a bit more life before it's too late!

    i've been on this forum for over 2 years now.....seems to me that, for many of use here, treatment for lupus is mainly only relatively effective: most of us always experience a degree of flaring lupus symptoms + we manage the day to day side effects of medications....and, as well as all that, there is the progressive damage we seem to inevitably experience due to both lupus and our prescription medications. i haven't personally encountered those lucky few who are free of all this....their lupus in remission etc. but i do wish remission for us all. and meanwhile, i just want to feel i see lupus and me realistically. so, thanks again to you all!

    and purpletop: please do let us know what your rheumatologist says, and how you get on

  • Purpletop - I haven't read all the other replies yet, but this question is massively pertinent to me. The Rheumatologist left a message on my phone back in September saying that my Anti DSdna is now "virtually normal". Instead of making me whoop with joy, this made me feel like a hypochondriac. I have been taking MMF and hydroxychloroquine for a little over a year now but suffer from bad stiffness - in the mornings, after sitting, after exercise, in the evenings..... just about any activity bring on a bout of stiffness. I have had horrible foot pain, extreme pain in my right wrist (to the extent the the OT has made me a resting splint), insomnia, night sweats, difficulty concentrating, fatigue (not as bad as before - but enough), random stabbing pains all through my body but mainly in my thighs and feet, extreme lethargy..... in short, a whole bunch of stuff, some of which I had before and some new. The worst thing has been the stiffness and a really horrible back pain that I put down to the leftovers of the slipped discs I had last year (tying my shoes has been a real challenge and upstairs in my house has been disgusting because carrying the hoover up there has been impossible).

    Life has been quite stressful lately - my Mum fell at the end of August has now been diagnosed with Alzheimer's. This is only relevant because it is my excuse for forgetting two consecutive doses of MMF and Hydroxy between Sunday night and monday morning. Halfway through Monday morning I remembered I hadn't taken them and stood up to go and get them, only to realise with a shock that I COULD stand without having to heave myself out of the chair (Joints that move effortlessly): strange feeling!)

    So I have experimented, though I am terrified to get ill again now that I have kidney involvement and I did some homework first. I found an article in a medical journal (Australian I think) that said if you didn't take it for three weeks you were at risk of having a flare. So I have missed 7 doses (3.5 days) and plan to see the week out before starting again (on Sunday). MMF has a short half life in the body (about 17 hours I think) so this should be plenty of time to gauge how much of what ails me is a 'side effect'.

    So far:

    Monday - nothing special. Did my usual stuff. Joint pain by the evening. Took some co-codamol - slept very well, no sweating and woke up without stiffness (except in my hands and feet), very little back pain;

    Tuesday - went for a long walk over rough ground ( about 5 miles - though I kept stopping to take pictures), a ;little bit stiff afterwards, but it didn't last. Entertained a small friend (baby sized) for a while in the afternoon. Slept well and woke up without stiffness and very little back pain.

    Wednesday - cleaned the upstairs of the the house (hoover went up two flights one step at a time, very carefully because I didn't want to set off the back pain); even cleaned a couple of inside windows; stopped short of also doing downstairs out of fear of setting it all off, but then swam 50 lengths yesterday afternoon, went to the supermarket for some odds and sods, met up with a friend and had a cup of tea, drove home, cooked myself a proper dinner AND cleared up. Watched two hours of telly (even this is an effort when you hurt) and went to bed at a normal time like a normal person. After all this I am quite prepared to be hit with fatigue like a tonne of bricks later today....

    But so far so good....

    I'll keep you updated on this experiment, Purpletop. It's a wretched dilemma, because obviously I am heavily dependent on my kidneys for life itself! But there is a quality of life issue here too. I am so desperate to be 'normal' and have never properly accepted this half-life that lupus engenders. Right now I feel almost like a whole person - and it's actually really nice. I keep flexing things just to check that I can!

    I'll start again with the drugs on Sunday and track the side effects as they come back and I will gird my loins to discuss this with the rheumatologist when I see her in September. I can just imagine her face when I tell her this story.....

  • Wow...that's geat. It's reassurring but also a little daunting as like you I'd love to come off my meds but I cant manage a few hours of the placquenil. My brain doesn't feel right, my joint pain/tendons hurt where I would wince. It is a dilemma though is it the dependency on the drugs that cause side effects and we then keep taking the meds. I take my placquenil daily and I notice near that time of the day when I take it I get more stiff/achy but I thought it would remain in the body. I hope you stay symptom free and will you report back to us too as well as Purpletop?

  • Mstr - end of day 5 and I have just come back from my second long swim of the week. today my muscles felt strong and good and I don't feel wiped out after. Truthfully, I feel good in lots of ways - and I don't think I am imagining it.

    But I have to start taking them again - I can't risk another round of kidney failure. So the experiment ends on Sunday. I will discuss it with the rheumatologist when I see her in December.

  • I'm glad you are staying well. It will be interesting to hear what the rheumy says? It would also be interesting to know how long all the meds stay in the system when we stop taking the meds and do they take a while to wear off? I will be interested to hear what happens after you see the rheumy. We always have so many questions with this condition. At the moment I hope you continue to benefit/enjoy your reprieve . Take care x

  • Great question and discussion for topic, it is really interesting for me to read other people's experiences as like you I think my expectations from the meds are high and include a desire to be 'normal' again, feeling like I used to years ago before being blighted by SLE.

    It seems to me that at the absolute best I may have days, or, part days, where I feel symptom free, but on the whole the fatigue doesn't leave me (to greater or less extent) and depending on how much I do or take on the aches and pains range from discomfort to agony. But in answer to your question I feel that I'm never totally symptom free for anything more that hours or a whole day at best.

    I like the reply of keeping a daily diary as suggested above, and I bought one from Lupus UK for a pound which is a great little book to record symptoms, meds (incl changes) and medical appts.

    All the best and hope your appt goes well, it may well be worth asking the rheumy what you an or should expect from the meds, and let them know that you never feel 'well' and always have some residual symptoms.

    Take care

  • I should also say that MMF is the best drug I've had for lupus so far!!

  • MaggieS, I agree. I was very afraid of it but it works better for me than anything else I have been on and so far (5 months) I am closest to symptom free on it than anything else I have tried.

  • This is a brilliant question and one I'm so glad you've asked! I'm a relative newby in all this, despite having lots of un diagnosed symptoms for many years. The last 2 years I seem to of been in a constant flare, I was really wondering what was happening to me, I hurt all over, agony, like bones were breaking, bakers cysts both legs, hair loss, vision loss, night sweats - same as everyone else pretty much. Started on prednisolone short course tapers and felt relief but every time is stopped I fully flared again - hydroxy added, then dose upped to 2x, then neuro symptoms started with each flare - ended up on stroke ward - neurontin added - the long and short of it is I'm on 12.5 mg of pred, 400 hydroxy, 600 neurontin - but I'm not totally pain free either - I still have a fairly awful flare around the time of my monthly cycle - and worse still I know it's going to happen every month and it's not just a few days either - then there's the days inbetween where I have important family commitments and I push myself because there important to me and I become so tired that I become totally noise intolerant can't concentrate on what people are saying etc in the evenings when I sit down my joints can just throb - I saw Rhuemy last Thursday and she asked me about pain now I'd been on hydroxy for 6 plus months - I said yes I still get pain and it can be excruciating, (baring in mind I'd been flaring because of time of the month) and she said so the hydroxy is not working for you, I disagreed with her because it has helped with my fatigue, I don't get constant ulcers up my nose and in my mouth, my bold spot at the front of my hairline has grown back, I don't get hardly any night sweats either and on this combo of drugs I'm managing better - no I'm neither pain free or symptom free - and I do worry because I'm on steroids daily 12.5 and it seems that not everyone is on steroids daily - but pre steroids I really couldn't function I recently slowly got myself down to about 11mg and every single joint in my body hurt (what I call pick axe pain) this mycophenelate sounds interesting and so I shall have a read about it - I'm finally being referred to st Thomas - I believe to see a neurologist, my rheumy here thinks my symptoms are more neurological - but that's not how it predominately started, I would say predominately it started with extreme fatigue and joint pain etc and I kept really struggling - the neuro symptoms came second but seem to of become part of my flares - maybe through progression or maybe because it took so long to be seen and medicated!! Who knows?! Anyway be really interested to know what your rheumy says also and well done for asking such a brilliant question. Sending you well wishes Jo xxx

  • Excellent comments ladies, has saved me any more searching the net for answers. I worry that because most days my headaches, sore muscles and flushing, are just real annoying and I can still "function?". If I tell Rheumi he will mess with meds which have been doing their job because I am better than I was. On the days that I am on the couch - telling myself that I just need another 10 minutes and I will get on with my day - I worry that something worse could be going on and I should tell him or at least visit GP. Then of course the next day I am feeling better so don't need doctor, lol. So, like "Slowmo", I guess we all have the desire to feel "normal" again. Is this it?

  • Yes!

  • Hi everyone, thank you for taking the time to respond, I feel that you are in the same boat with me, I.e. we function but we aren't symptom free. I can see why, in a way. As there is no cure, the meds are there to dampen the activity to the greatest extent possible but not to the detriment of body's ability to fight.

    However - close monitoring and good collaboration with the rheumatologists could help achieve optimum balance and HOPEFULLY, remission. At this point it seems that none of us has achieved MEDICATED remission, let alone the natural one.

    I will update you all tomorrow, thank you again.

  • Hi Purpletop

    I'm also really glad you asked this question and am so interested in all the replies. I was diagnosed with M.E./CFS 9 years ago but in August was told I have Hughes Syndrome, secondary to a primary autoimmune illness, which is being called very atypical Lupus, rather than M.E. I have symptoms every single day and have had for 9 years, have had to give up work, having previously only been able to work 3 mornings a week, and have no social life at all. I've now been started on Plaquenil and may be put on other meds but I've been wondering how much difference these will actually make. I suspect I will be coming back to your q & the answers over the next few months, if only to console myself that there are others out there who -even with meds - struggle almost constantly with this illness.

  • Hi Purpletop and like others who have replied, thanks so much for bringing up this subject.

    I have been on MMF for 10yrs - this is not just for my SLE but also acts as an anti rejection med for my kidney transplant. This, together with another anti rej. med (rappamune) has controlled my Lupus activity brilliantly, but I still get the symptoms including exhaustion, rash, sore joints, hairloss to varying degrees etc. No matter how well your Lupus is controlled, it seems the symptoms never leave us. Good luck with your rheumy appt tomorrow and let us know how you get on!!

  • Such an interesting question and replies. I too have constant niggling changeable symptoms but manage to work 25 hours a week! Last time saw rheumy he said all my bloods were good and that the pain, fatigue, flu symptoms, dry eyes etc were just how it goes with 'mild' lupus and sjogrens. I Take mepacrine and regular pain meds but managing off steroids just now. Would write more but going away on retreat for a week today so will visit this post again and see how you got on Purpletop, thanks for starting such an interesting thread. Xx

  • Great question and can fully relate. It's exactly as you say...muscle aches pains, fatigue (various levels), numb leg, stiffness after sitting or later in the day, cognitive problems (memory and concentration), noise and light sensitivity (though worse in a flare but still there). So yes I have to say too the methotrexate is working because the flare ups are 'usually' less intense but they are also still there. I had a bad one recently with memory affected, headaches and just couldn't string a sentence together or hold a thought in my brain. It ceased after two weeks but I sill have the usual lupus memory problems on a day to day basis. Fatigue and aches/pains still around. For me it takes the 'edge' off it but it's still a daily battle most days in some way or other. x

  • Very good description. I thought Lupus was different for everyone? This sounds exactly like me!

  • Thank you...I try lol:) I always feel so reassured to read all our posts on the site as you realise we are not alone.....and probably we actually do understand most of the symptoms that lupus gives even if some days we are all affected in different ways. I think we should take bets each week where we will be affected...stiffness in legs, sore shoulders, aches, more fatigue, joint pain, chest pain. Never a dull day;)!

  • Hi everyone, I've posted a separate post with an update, check under Questions.

  • Hi everyone, I've just joined this site and was really interested to read all your comments. Although I have had Lupus for 26 years, most of that time I have been relatively symptom free (ongoing fatigue, occasional joint pain) and was managing without any medication. Unfortunately things changed 2 years ago when I developed chest pain which I have been unable to get rid of despite trying many different treatments recommended by my rheumy. Four months ago I reached the point where I was struggling to stay at work despite a very supportive boss and had given up hope of ever feeling better. Fortunately my rheumy didn't give up so easily! He offered me a course of Rituximab and now my life is almost back to "normal". I still have some chest pain, suffer from fatigue, and am taking a lot of medication but at least I am able to do my job and socialise with friends/family without everyone having to make allowances for me. I suppose I just want to say, don't give up hope - it's still possible to live a normal life even if you're not 100% symptom free.

  • Hi Purpletop

    You posed a very good question.I've found from my own experience that Consultants judge the success of a drug on whether it has reduced the number of flares plus symptoms. How did it go with your Consultant?. Good I hope. I have found like you I've never been totally symptom free but it's been cop able compared to the bad times. I'm pleased you've had benefit from Cellcept, it's been my best drug and I didn't have side effect problems, took it for 6-8 years. Now I'm just on the steroids and an NSAID, you may not remember but you gave me good help and info about muscle inflammation and it looks like that's what I've newly developed.Hope you continue to do more normal things, don't we appreciate it?. All the best x

  • I too was told (pulmonary dr) that meds will help but I'll not ever be back to the way I was. It was sugar coated somewhat, but that was the meat of the conversation.

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