Is there a way to make life tolerable without all the medication

I was diagnosed in September of last year, but after years of suffering from this without knowing and thinking I was mad I am trying to manage this without medication wherever possible and wondered if there were any tried and tested formulas out there that I could adopt. I have a tendency to react badly to most medication and somehow the knowing what it is gives me something to get hold of mentally.

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  • Rosie - I don't know what to say. I refused all medication when I was first diagnosed. I got better from a first severe flare (it took six months) and was then pretty much ok for a couple of years, I was taking ginger, turmeric and fish oil. Then I had a very severe flare while on a camping holiday (though truthfully I'd been getting worse for a few months but was trying to deny it). When I saw the consultant, I couldn't eat, was in horrible pain and badly anaemic - I could hardly get my breath. I have taken the drugs since then. They haven't always worked. Until my kidneys failed due to lupus nephritis, last March, I was the ibuprofen queen!

    I think part of the answer to your question may be this: until 1955, when they began using corticosteroids to treat inflammation many people died within 10 years of diagnosis (not necessarily of lupus - but from an infection because their bodies couldn't fight it). But long term steroids can have bad side effects. So if you can avoid these, do. The DMARDs (disease modifying drugs) which slow down the progress of lupus, can also be horrid if they don't agree with you - but it is worth trying maybe one of the milder ones like hydroxychloroquine (plaquenil) if your lupus is not too bad. Better that than refuse all drugs and end up having to take stacks of the heavy duty stuff forever and ever.

    Rosie - this is just my opinion - based on my experience. My lupus is now really bad - and I wonder what might have been if I had done what the rheumatologist wanted 7 years ago and taken methotrexate back then. Maybe I would still have fully functioning kidneys? Who knows?

    I'm sure loads of other people here on this forum will have different experiences - this disease is a strange and variable beast. If you trust your doctors, my advice is to take their advice!

    Good luck!

  • I think that this is what I need to be reading and hearing rather than the story I tell myself that if I do this and this then nothing worse is going to happen. I have been hospitilised several times because of my kidneys but tell myself it gets better every time so I am better off without medication but never really thought of the long term effect that this is having. Mentally I think I am getting there that I cannot do this on my own as things I have tried seem to make me feel better but over time I dont think they have improved my quality of life and find myself becoming a hermit. Been doing a lot of research today and the responses to my question seem to be voicing the sensible information that I have been reading.

  • Hermit-hood tells me enough Rosey! Get the drugs. Please. I was in that place a couple of years ago and it is not a good place to be.

  • Maggie, were your symptoms bad when your rheumatologist wanted to put you on Methotrexate 7 years ago? My rheumatologist was considering Mtx for me if the current flare is not settling but I'm hoping it will only on plaquenil and the tail of a steroid treatment (tapering at the moment). I'm worried that if I'm on plaquenil only, I may end up with lupus nephritis or who knows what else. I'm trying to see whether Mtx is being given preventatively or only on severe symptoms...

  • Yes - they were very bad. Severe anaemia - and hideous joint pain. She started my on 20mg of prednisolone and 7.5mg of MTX - which slowly doubled to 15. The Pred had me on the ceiling - Woooooo! I hadn't been that high since I was a teenager - literally, I could feel the drug rush within hours of taking the first ones.... ALL the joint pain instantly vanished and for a day or two I felt like myself again (but obviously, it was TOO much). I hated MTX though the smaller doses 7.5mg or 10mg were OK - but more than that made me feel horrid. Counterintuitively, I eventually discovered it was best to take it in the morning, then I could get through the day at work - as the side effects tended to kick in after 12 hours!

    But its different for everyone - I've heard loads of people say that they were fine on MTX for many many years.

  • Hi Rosie

    I am newly diagnosed so I am probably not in the best position to comment or to give advice, as I have only been on treatment for 2 months, but I have been "not right" for about 5 years and I suppose was in a continuous flare cycle for the last year, I am now taking azathioprin and predisolone steroids (the steroids are on a constant basis rather than a shock basis like i was), and if my rhumie told me he was stopping them and taking them away I would seriously lay on the floor of his office and kick my legs and stamp my feet in a temper tantrum way as I feel the best I have felt in years (although today I fell a crock of poop), I know at the mo its the steroids buoying me up and not the azathioprin, but I actually have some energy, I can spend an evening out with friends without having to come home early and the best bit of all, I can watch a whole film on the sofa with my husband with falling alseep !!!

    Taking drugs is not everyones choice and maybe I will come to a point in my life where I decide to stop, but you have to look at the pros and cons of the situation, I have wasted far too much time falling asleep on the sofa and not being part of a couple or having to come home early from a day out with the kids, and its nice to be able to do all those things and more at the mo. My consultant gave me a challenge to lose weight on the steroids, and do u know what, I have ! I have lost half a stone in 4 weeks ! Which doesn't sound much, but steroids have the great ability to make you put weight on by blinking. I am taking calcium as i know long term steroid usage can think the bones.

    because i wasn't on treatment (ok so we didn't know what was wrong) but I am embracing this drug induced

    I am not saying they are a magic miracle cure, as I am still easily confused, and still have the brain fog, and my hands hurt and feet ache at the mo and I have the rash back on my face (bare essentials make up is the best make up i have found to cover), but I have no mouth ulcers or nose ulcers and i can eat and drink and talk, I don't feel as tired, my eyes aren't as gritty.

    All i know is I have somehow got myself some extra spoons to play with on a daily basis and I am not giving those up for man or beast

    J

    ps I also react badly to most meds, especially anti biotics, but I haven't reacted to the azathioprin, so I am thinking somewhere somehow my body has gone, right that enough, we aren't fighting it anymore, we give in, we surrender and I am being allowed to live again :)

  • I had steroids last year but did not enjoy the side effects. I think that all opinions are valid and listening to my own reasoning is not getting me anywhere on good days I think I have made the right decisions and on bad days I think where is my head...

  • I think it is important to take medication if it will help you, please discuss options with your GP or consultant, including mentioning your reluctance to take meds and see what they advise.

    I've had lupus since 2003 I only need painkillers and hydroxychloroquine (plaquenil) so my meds are not too bad and do not seem to have any side effects. However it took me a while to accept that I did need these meds, and to accept that I will probably have to have some form of medication for the rest of my life (if you were diabetic and needed insulin you would take it, and having SLE meds are no different)

    Other than medication the following all help me -

    Getting the amount of sleep you need (I need 10-12hours not the normal 8hrs).

    Paceing self (including not doing too much on "good days").

    Having a healthy diet.

    Doing a small amount of exercise each week - each day would be even better but you have to fit exercise in around what you can do without making any aches tiredness etc worse. (I find I can manage yoga and aquacize done gently a few times a week).

    Looking after my mental health

  • Hi, Thanks for your response it piqued my interest as that is the same medication that I have been offered. I usually need 10 to 12 hours but have been trying to limit myself to 8 thinking maybe sleeping so much is not helping! I think I have been in denial for a while as trying to make sure I walk the dog twice a day and beating myself up when I cannot manage that. I have changed my diet but then I have mad days and seem to forget everything that I have been doing to make myself feel better. Pacing would be a good thing to adopt I am so overdoing it on good days that am getting the feeling that my bad days are gaining momentum. I think I need to change my mentality a little and give myself the best chances.

  • Hi Rosey, It's a good question. I too normally detest taking any tablets of any form. However I have found that I could not have managed this year without the hyroxychoroquine. It really started to work within weeks, however, after a year now it has helped massively with the fatigue and whilst I keep flaring it has taken the edge of each flare up without any side effects occurring. I also take co-codomol when I am flaring quite badly. I am presently on 400mg daily and would like to try and drop down to 200mg but the last time I did this I ended up with a very bad flare up. Like fabwheelie said above I also need 12 hours in bed (8 not enough) even if I am resting it helps, I swim (just building up to twice a week now from once a week). Last year the fatigue was so bad I would never have been able to swim....so I am grateful to the hydroxychoroquine for this. I have been dieting and have lost 1 stone 4 pounds and try to eat healthy(bread, caffeine, sugar and processed food I try to eliminate from my diet. I too would like to come off the meds but could not go back to how my life was last year (continually flaring/unable to cuddle me or it would be sore/fatigue/joint pain etc). I'm grateful to be able to go to the park with my grandson, swim now, see friends and enjoy life. This all has to be done in a different kind of way with pacing myself very much the key to it all. I spread seeing friends out, take gaps in between the days I exercise (swim), I have eased up on housework rather than trying to keep everything perfect (surprise surprise....the world hasn't come to an end here). It's a very different way of living than before but the meds and lifestyle change have helped loads and I think they work together to help manage this illness.

  • Thank you seeing it all written down it makes perfect sense.

  • Unfortunately not in my experience Rosey and I must have tried every possible alternative therapy over the past 20 years. It will certainly take you a couple of years to get your head round and discover what drugs control your symptoms tolerably. Meanwhile, learn about SLE and the drugs used to treat it. Take responsibility for your treatment, make informed treatment decisions rather than simply agreeing to anything your consultant proposes. They do their very best for us of course but aren't always right! In fact, the very best like us to challenge them. Be careful what you put in our body. The drugs involved are serious stuff!!!

  • I have been researching a lot today and the thing I have come away with is that I must take control of this myself and be willing to try and if necessary challenge my GP. I am coming to the conclusion that alternative therapy is my own mental block to finally accepting that this is not going away and to give medication a chance. Have tried lots of things over the year, my most ridiculous was a body massage which I had to halt after 15 minutes as it was just so painful!! I appreciate everyones response not the answer I thought I was looking for but loud and clear none the less certainly feel it was something I needed to hear.

  • Rosey....that's good to hear. I 100% get what you were saying as it is a struggle for me to accept being on I meds and I revisit this dilemma at least once a week in my head. However, I do value the advice of people who have been managing this disease for years. I try and stay one step ahead and pre-empt if my consultant wants to put me on the next drug. For me I will try to avoid steroids at all cost and want to try the other DMards first before this. I'm eternally grateful to my GP for phoning the rheumy last September to say I needed to be on hydroxychoroquine as I know this is keeping the worst at bay (for now). You know what they say "If you can't change something then change the way you think about it". A fab question to ask.....thankyou:)

  • If you knew that you have SLE before you got your first couple of flare ups than I say yes, you could probably manage to avoid drugs by living healthy, stressless lifestyle, with exposure to infections or sun! But of course that would have been quite diffucult. The thing is that with every new flare that you get your SLE gets worse, as the number of autoantibodies and memory cells increases.

    Being on hydroxychloroquine is still okay, it's probably the least harmful drug that you can take. If it can stop your body from getting more flare ups than you should seriously consider it. Becasue if you let your SLE progress too much you might end up on steroids and cytotoxic drugs instead...

  • Hi ,weirdly i posted a blog today to do with exactly the same topic,i hadnt read your post!i too am totally beating myself up by accepting medication,im taking plaquenil ,just 200mg at the moment as i react so badly to medication ,im the same with alcohol i literally feel poisioned ,so for me to accept meds is like admitting defeat ,i have been batteling for 16yrs with this disease ,and just six months diagnosed, i seem to have been in a flare since last december ,before that i had battled small flares always after stress or overexertion and too much sun ,infact the last biggest flare up untill last december was 10yrs ago ,when i was signed off work with M.E and told to rest ,it took around 4 months to heal from that in which time i became pregnant and flared all the way through pregnancy but put it down to pregnancy not lupus becuase i didnt know that i had lupus at the time,sorry for ranting on ....i think what im trying to say is.....i have tried this last 11 months to recover from a flare like i did last time ,however it isnt helping so i have succumbed to plaquenil but wish there was somerthing less toxic ,i feel rotten and hope and pray that it does what its supposed to do and helps me feel better soon?i wish you well and can only reassure you that your not alone ,take care brave;)

  • Dear Rosey

    I am unable to take medication as I am allergic to everything I have tried (severe throat swelling, difficulties breathing etc).

    I am therefore obliged to go the "natural" route and go for an anti-inflammatory diet, vitamins, fish oil, cherry juice (very anti-inflammatory), probiotics etc. I no longer drink tea or coffee. I also avoid sulphates in detergents and sulphites in food (all more difficult than one would like). I have had intolerance testing done by the only home testing company approved by Allergy UK and since then I have tried to avoid foods which don't agree with me.

    I still have mini flares (mainly brought and by stress and possibly hormones, I think) and I do feel quite tired a lot. However, I am able to cope generally on a daily basis as long as I don't overdo it and pace myself. I can even go swimming and cycling at times.

    xx

  • Everyone is different and you need to try and see what works for you and take any recommendation from doctors. But life style change will help and is important, you need to see what works for you when you are well and when unwell, this includes: food/drink/exercise/work etc..

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