i am thinking about not taking any tablets at all... - LUPUS UK
i am thinking about not taking any tablets at all, i feel that they do me no good. What do you think..
I often feel really poorly even with all of the medication I take, BUT, I have had a couple of nasty sickness bugs and for a few days couldnt keep my meds down. It is shocking how much work the medication does. I still feel bad but nowhere near as much as I would without my meds.
Sorry but its a bad idea to stop them
x
no please dont stop your meds, only with medical advice.
about 5 years ago i got sick to death of them and just stopped except for co-codamaol.
with in 4 days of doing so i could not walk and the pain was horrendous.
so i looked it up. and it said if you just stop taking plaquinal and steroids you will die.
you have never seen someone hobble so fast to get her meds.
i told my rhuemy what i did
and she pulls her chair up to me and said oh thats interesting, i have never seen anyone live through that before.
you may not be on the same tabs as me but i learnt a lesson, sometimes it seems the meds dont work but if you miss one out you soon know about. xx
i can see what you are saying and i will think about it thank you.x
hi love, i know a girl who stopped all her meds with doctors help
she dont have lupus she has fibro and few other things.
now all she takes now and again is paracetamal.
it works for her, would you let us know how you get on.
sometimes i wonder about all the med and some are really important
so have no choice with them ones.
but others like amertrips lyrica etc i do wonder.
good luck and every thing works out well for you 
x
You must never stop your meds without permission like medical advice because you just end up in a worse situation than you started of with its bad. I hate taking my steriods and my adcal d3 because i find them yucky but i have to take them and i wouldnt stop just because i feeel they aint working or because they taste bad. Because i no they are not curing my condition but they are controlling him.
yes i know the meds are to help me, i don't take steriods thats one thing i don't take.
but i am seeing my DR and talk to him about stoping. thank you x
As the others have already said, definitely DO NOT stop taking your medication without approval and close observation from your consultant. It can be very dangerous. If you are really unhappy with your current treatment regimen and you feel it is not working for you, then I'd recommend that you arrange an appointment with your rheumatologist and discuss it with them. There may be alternatives that they are willing to try you on.
I am not stoping without seeing my DR. so i will get medical advice.
Put thank you.
don't do it please. i asked same question last year and went ahead after seeing a dermy who told me the tablets i am taking mask the illness and they never truly get the proper results, so in my wisdom i thought stop and see what happens then they can do more tests and get proper results.BAD decision the pain was everywhere all time i had a bad flare and ended up on even more pills than before. The rhumy went off it as well so please please don't stop.
Talk to your Doctor before you even think of giving up your Meds.some meds take a time
to start acting in the body.
I've tried doing this before always end up going back on them I get into day 3 or 4 and start to feel the results of stopping. Last year I stayed off them fora full week then bang went into a flair ended up back on the meds pluss I needed to take steroids for 8 weeks. So you would think I'd have learned my lesson but no I still often think about stopping my meds.
I really understand how you feel, I often think of doing tihs myself. I seem to recall two yeara ago working full time on minimal meds and 'just about' coping. Since then I reduced my working hours eventually leaving work altogether, this coincides with going from hydroxychloroquine alone, to steroids and now Aza, also 12 hour tramadol, amytriptyline and so on and so on. I feel worse than ever, and often believe the meds are making me worse, my rheumy states they are working well and controlling the illness (SLE), I however feel the illness is controlling me! I frequently wonder if reducing meds (with advice/support) would enable me to return to my previously functioning life, professionals however feel I would go down with a bang, so to speak. I sometimes feel i'm stuck between a rock and a hard place. If you go ahead with coming off your meds (as stated with support medical advice) please keep us informed and really hope this works for you, Slowmo x
In response to the post about the lady who stopped her tablets who has fibromyalgia and not lupus there is an obvious difference. I have both. Fibromyalgia is a chronic condition it does not kill you, lupus can and the damage can happen to you organs without obvious symptoms. I too hate the level of medication I take but realise it could save my life. It's the lesser of two evils.
hi sig352,
yer i know thing is she now drinks it controls her pains i surpose.
i have the fibro as well,
i have noticed if i forget to take the lyrica then the pain plays up.
i think in the back of my mind that if i dont take the meds then i wont have the illness
crazy i know and that things will go back to how they use to be, it dont work like that 
Hi, all last year I played around with my tablets as I just didn't want to take them anymore, it made me feel sick just thinking about taking them - steroids, aziothyaprine, warfarin, calcium, antidepressants, mood stabilizers, somethingelse for my oesteoporosis. I then decided at the end of the year to just stop NOT ADVISABLE but I'm through it now and apart from this week, I've been feeling much better and have achieved a lot more. My pain is more acute but that's ok as my mood has been lifted. I spoke with my consultant at St Thomas' about it after the event and he was excellent, he told me that they just don't understand enough about lupus to know what precise tests to do or drugs to give - what works for one may not work for another and basically he said if a drug isn't working for you then stop taking it - they dint like us being on these heavy duty drugs either because of the side effects. He didn't comment on my psych drugs as he's not a psychiatrist but he told me I could contact him direct if I hit any problems. I'm. So so lucky to have him and an excellent GP, wish I could share them with everyone. Give it a go, tapper down your drugs and then give it a few months to get out of your system. Good luck. Xx
Please do not taper down drugs without express permission and supervision from your physician.
Agreed. Discuss it first but each person should be allowed to take control of their own treatment, therefore permission is desirable but not required. Be clear on what it is you want and take control. :-)
i have LUPUS and my body is not doing to well so all the tablets i take for my Lupus(MYCOPHENOLATE MOFETIL, AND QUINORIC, FOILC ACID, VITAMIN D TABLETS,)AND FOR MY DIABETIC 2 I TAKE METFORMIN) SO my lupusis not getting any better with all the Tablets i take for Lupus they want me to take STEROIDS but that is one thing i will not take. i want to come off all the Lupus tablets so i can take back my life. xx
Another point of view, I have stopped taking all my meds except what I feel I need to take, I now take Lamictal for neurological involvement, very neccesary for me and also warfarin for my Hughes syndrome. I use chia seed to keep my blood pressure low and chromium picolate for my metabolism, I have tried all the other drugs for SLE and they don't work for me and my life. I still take painkillers but am gradually reducing them. This is my decision and I keep my Doctors informed of this and the research I have done before attempting this. Also on D3 and K2 I have so much better quality of life more energy than before, BUT it has taken me a long time reading all the research done on these subjects before attempting this. I also stick to an adapted Paleo diet. Everyone is different and SLE effects people differently, I'm not 61 was diagnosed at 23 but told I probably had it much longer, Keep in touch with the medical proffession and read and ask for tests. It's your body and your life you aren't a guinea pig for research unless you agree to be.
Rant over
hi i go through this every week and i did it without medical help, i researched like others have and like others have said" wot works with one may not with another" i took myself off hydroxchloroquine in october last year , 3 weeks after i was able to take myself off of pizotifen a tablet for cluster headaches of which i suffered AND i now do not have 2 wear glasses as hydrox was effecting my eyesight, i personally feel that you as an individual have a choice all the lupus books tell you to take control of you own health .. how the hell can we when most of us are on over a 100 meds a weeks and dont even have the energy to say no ..... rant over hope i havent upset anyone as its not personel its FACT x
Hi Im feeling the same. Im feeling very depressed. They keep insiston I have high does of steriods every three months been on them for5 year and six stone Im due on mon 120g Put do not and will not going to have it.. sorry about moan
