I am experiencing a flare currently but want to stop all meds. Is it a given that my lupus will worsen or is there a chance it may stabilise

[Alupie]

[gertie]

Unfortunately it is impossible to say - you may have a short or long flare and you may get worse/better...that is the frustrating thing about this illness it is very unpredictable.

Can I ask what symptoms you are getting in your flare?

[Alupie]

Really bad headaches, fatigue, joint and muscle pain, ulcers, depression. If there is even a small chance that I won't have any more flares I feel it's worth not taking meds.

[gertie]

It is really awful, I am sorry you are experiencing such pain. I understand completely about wanting to stop taking meds, I go through the same feelings. I would recommend booking an emergency appointment with your Rheumy - write down all the symptoms you are experiencing and also ask her to review your current meds if you are not feeling any benefit from them.

[Alupie]

Thank you. It's so nice to chat with people who know what I'm going through. I've never spoken with anyone else who has lupus and co-morbidities. Nice to know that I'm not alone.

[Alupie]

Ps. Sorry, I should just say that whilst it's nice I'm not alone with all this I wish that no one else had to suffer with lupus.

[Hidden]

WARNING: Stopping all medications can be fatal if you are in active flare up. Stopping all medications can be fatal if you are non in flare up too.

For Example : Many medications are used for prevention - to minimize quantity and severity of flare ups and limit permanent organ damage caused during flare ups. Stopping those is folly.

DO NOT stop your medications without your doctor/s permission consult and supervision.

Please get an urgent appointment with your doctor/s and discuss your best options.

If you believe you are not receiving benefit from your medication treatment routine discuss this with your doctor/s to sort out the what and the why.

If you take multiple medications some are likely imperative and some may very well be ineffective. Only your doctor, with your candid input, can determine which is which.

Please reach out for help as what your are considering is dangerous and potentially fatal. Be well and take care.

[Hidden]

I must add : YOU ARE NOT ALONE.

You have lupus. There is no denying that fact. If you choose to withdraw from taking medications, choose to stop treating your lupus with medications and choose an alternative route, it is well within your rights.

Please thoroughly discuss the consequences of this action with your professional medical providers (doctor / nurse / counselor). Management of your symptoms seems to require some adjustment. You deserve more relief.

No one can foretell your future or your disease's rate of progression / deterioration. It is highly improbable that you will never have another flare up. It is highly probable in fact, with or without medication, that you will have more. This is LUPUS. It relapses and remits. It is relentless.

It is true that lupus does and will cause permanent damage to your effected organs over time - limiting the quality of your life.

It is also true that a lupus flare up can be fatal in the blink of an eye.

The doctor/s and medications are meant to benefit you, protect prevent and ease your discomfort. If you have no relief find a better solution. If you believe that solution is without medication be certain you are well informed prior to making that choice. Once permanent damage is done there are no do overs.

Please take care of yourself.

[Minimum in reply to Hidden]

I agree completely with Nouska, as he say's take care x

[Alupie]

Thank you Nouska. I suppose there's a part of me that feels if I stop meds then Lupus will go away - after all, you only take meds when you're ill, right? I'll talk to my doctor on my next visit. Thanks again

[Hidden]

I totally understand where you are coming from. I tried it all - the healthy diets; the drugs; avoiding the drugs; denying the illness; trying to carry on as if nothing is wrong.... the methotrexate made me feel so horrible I stopped taking it and before I could start a new drug I got severe kidney failure from lupus nephritis, ended up being admitted to hospital as an emergency and now have to have cyclophosphamide infusions which (believe me!) are way worse than the MTX. I knew I was ill, but kept forcing myself to carry on working and going on long walks to try to get fitter........ trust me, it doesn't work. Your body is in control, not you!

Please don't stop taking your drugs - lupus is horrid, and the normals don't get it (even quite possibly your own family don't get it) but please please please look after yourself and do what the specialists think is best. Don't put your life at risk!

I have promised to be a model patient now.... and I am really trying!

[Alupie]

Hi MaggieS. I am so sorry that you are having such a tough time - its really not fair. I shall try really hard to do what the doctors say and put my body first. Thank you for sharing your story with me

[MandaM]

Lupus took my kidneys from me and have had a good go at my eyes but not succeeded there. PLEASE DONT STOP your meds, they're taken for a reason and that is to try and prevent Lupus from destoying you and your body. You must speak to your consultant. I have a med which i want to stop as i believe it's making me ill (Mycophenalete Mofetil) but i have to seek professional advice first and make sure my other immune suppressants will be enough to keep my kidney transplant safe. Good luck and hope you feel better real soon x

[SRamkin]

I was diagnosed with SLE Nephritis class V last year. I was so frustrated with the moronic doctors and the horrible IV steroid punishment they called treatment that, after three sessions, I never went back again. It's been a year, I'm only taking Plaquenil, I'm not seeing any doctor and I'm still around.

Apparently, steroids, and in many cases doctors, are far more dangerous than the condition itself. I, for one thing, will never take any poisons again.

This is just my way of dealing with it, I do not advise you to do the same.

Best Wishes

[Alupie]

Dear MandaM. Thank you for your message. I'm so sorry to hear what you have been through - I wish you all the best and thanks for your kind words.

[Alupie]

Dear SRamkin. Thank you for your message. I do hope that you continue to do well - do look after yourself please!

[poopah]

i am recently diagnosed to and feel the meds are causing more problems than the lupus itself. my problem is that i have nephrotic syndrome as well so my renal doctor is trying to protect my kidneys but i have lived with that for 10 years and my kidney function is fine. i actually feel like a guinea pig and have rebelled against treatment all the way, i have decided to carry on until my next hospital visit and then stop as these drugs they give you have awful side effects and i guess it's just a choice of weighing up the risks of it all and doing what you feel is right. Good luck

[Alupie]

Thank you. Sometimes it's really difficult to know what to do for the best - I guess if we all knew what the future held then things may be so much easier! I hope you get on well with your medication and you find some that works for you.

[tintin49]

i am glad to be reading this thread as i am in a position that i dont trust my rheumatologist and my gp practice are total idiots anyway. in all honesty its the total lack of proffessionalism that is causing me total despair. if i felt that the lupus was being managed and that the care i recieved was good or even adequate then i would not feel such apathy. the way that the doctor dealt with my flare by telling me to stop the meds and go home in so much pain and get on with my pain and the long walk home in total distress will never leave me.

[poopah]

hi tintin49, i have the same problem. Although my doctor is competant he is a renal doctor and i personally don't think he should be treating me for lupus. When i questioned it and asked why i wasn't seein a rheumy i was fobbed off hence why i am rebelling against my meds. It's all very confusing and when you have an unsympathetic doctor it can be very distressing as i found out too. I have found that this forum has been a brilliant source of information and support and have now started to get my head around things despite no information being given to me at all from my doctors. I really hope you get the help and support you need and a big hug

[tintin49]

i was diagnosed in april with mild lupus. a bit tired,a little achy.stiff hands and feet,dodgy eyes. always have had protien in urine and very allergic all my life to moscito bites and heat rash.

since seeing the rheumatologist and starting planequil i am downhill all the way. never been so ill/tired/achy in my whole life. from someone who is rarely ill/gym 4 times a week i am now a physical and emotional wreak.

i believe planequil has exazzerbated whatever dormant illness i may have had. my life is now a big joke. i rue the day that i started this horrible treatment. now i am experiencing a huge flare and am in so much discomfort and turmoil i am now on steroids which have kicked in and i feel better but feel very depressed. sad.lonely i cant socialise anymore.

imao i am not impressed by all the treatment,rudness and total umproffessionl crap i have been doled out.

planequil has not worked for me it is my living hell. i may have had lupus but my body was coping now it is raging and so am i.

[poopah]

You have summed up my sentiments exactly tintin49. I had it mild and now i have a diagnosis and some meds i am downhill too. I am also a physical and emotional wreck and would have rather have not known and carried on. I have decided that i will do the treatment till august and then that's it i am coming off. I am on mmf and steroids and am sure they are making me depressed with serious mood swings. some days i could quite easily end it all and others i am so angry. my joint pains have improved slighty but also have other symptoms now which i feel are worse. My gp is sympathetic but not knowledgable and my renal specialist is abrupt and sayinghe can give me antidepressants which i have flatly refused. Lifes a joke. I really hope you get better soon and am letting you know you aren't alone.

[tintin49]

thank you poopah for your candid and honest relpy. i was worried that i sounded toooo negative but its the truth i am worse since the tinkering of drugs and i am aware that they have made my symptoms worse and at times unbearable. it looks like a bleak outcome no sympathy from gp they dont agree that i have lupus and a rheumatologist that insists i take plenequil and now depo-medrone and she has planned something to make me sleep in the future. i am feeling like a gunea pig

[Diane48]

I know how you feel I am never sure if the medications help or make us feel worse at times I just started plaqnil about three weeks ago but they say you have to be on it for awhile before you know if it helps.and as of right now I feel lost I am sore and stiff and working is very hard somedays there have been a few days were I did feel good just wish that could last. I hope you the best sometimes we make choices and we just hope there thevright ones.

[tintin49]

all the best diane and to all of us that have to make such hard decisions just to stay alive and feel normal. hugs to all. its in gods hands sometimes not the doctors.

[tintin49]

the consultant made an emergancy appointment to see me he agrees after much debate i am better off not on the meds. they have ruined my life. he wants to arrange a brain scan and every 3 months i will have a thorough check up i feel that i can regain my life again, i suffer from depression which he has picked up on and my gp will see me to arrange some support plaquenil is not for me. i am free.

dont get me wrong i am in pain still, the plaq helped with the stiffness but nothing else. walk in an odd fashion and disoriented but much better

ca

[Herb]

Talk to your doctors about why you want to stop taking them. You could get worse without them but if you wand to stop taking them your doctors are the people you should be talking to, they know your condition and can explain to you why you need them.

They could refer you to the speclist nurse or a counsellor to talk things through with.

[dgleds in reply to Herb]

its possible to wean stuff down too...minimal doses after a while...like 1 plaquinil every other day, so its in your system some what. I cant tolerate the 200mg twice a day...I did for about a month, then 1 a day (still odd stuff), so now 1 every other day...been on plaquiil about 7 months now, so must be built up in system.