Stopped taking all meds

Hi, I am after some advice. I was diagnosed with sle January 2012 after years of joint pain, rash and fatigue. I was prescribed hydroxychloroquine 400mg daily. It made no difference so I was prescribed methotrexate 17.5mg. Again it made no difference. Over the summer things were pretty bad so I was also prescribed steroids, again no difference.

What I don't understand is that I have only ever had a positive DS DNa, not positive ana and all other bloods normal. When I went to see rheumy nurse in September for tests all of my bloods were completely normal but I still felt rubbish. Due to this I took myself off all drugs without discussing with rheumy or gp's as I knew they would disagree.

I have been off everything since September and feel exactly the same, I just don't understand and I am worried about seeing consultant in two weeks time as they were not informed. I wonder if I even have lupus due to bloods and meds not seeming to show anything. When I suggested that to rheumy nurse she said I have it and need to accept it but I just don't feel convinced and don't want to pump my body with drugs that seem to make no difference. I feel rubbish most days regardless.

Thank you for taking the time to read this :)

15 Replies

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  • Hi Mandymerrit.

    How long were you on those treatments for?

    A positive DS DNA is strong evidence of lupus as it is an antibody which is highly specific to this condition. It is possible that the treatments you have tried may not work for you but others will. There are quite a few more treatments that you could try and not all treatments work for all patients.

    It is important that your doctor is made aware that you haven't been taking your medication, otherwise it will be very difficult for them to have an accurate idea from your test results. Ultimately the decision is yours whether you choose to take medication or not, but you should discuss this with your medical team so that you are fully aware of the potential risks and benefits associated with this.

  • I was on the hydroxychloquine for a year and 9 months and the methotrexate for about a year. I know I need to talk to them. I just find it hard to understand that there have been times that every so often my bloods are all normal with no positive ds dna. Why when that is the case I still have awful symptoms? I think this is what I struggle to get my head round and the fact that the medications I have taken have made no improvements! Do you know if without treatment that lupus progresses, I think that is my fear however I don't like taking drugs when I see no improvement. Thank you for the reply.

  • ds DNA levels in the blood can fluctuate and normalise which could indicate why you had some negative results. It is rare for somebody that doesn't have lupus to have a positive ds DNA test result.

    Having ds DNA antibodies does put you at an increased risk of kidney disease or vasculitis. Being non-compliant with taking your medication is the number one cause of lupus flares and with doing poorly from lupus, including developing severe kidney disease and even dying. Survival rates for lupus have increased remarkably since the 1950s and this is due primarily to improved treatments.

  • Thankyou Paul that is really useful. I am seeing the consultant in two weeks time so I will discuss other medication alternatives and see if something else may help. You have explained what I have been questioning for months regarding tests results and the future so thank you for that.

  • Mandy....I was diagnosed low end lupus with. Positive ANA last year by kidney dr cause I have scarred kidneys. Started a regiment of digestive enzymes and preventative sticky blood enzymes. Feel lot better. Less tired. Take vit d and b12 daily. I don't ever want to go on drugs. Tested in August, negative ANA, no lupus according to rheumy. I don't believe drs anymore. I listen to my body,and trust my own instincts and read and find natural solutions.your body has an incredible ability to heal Itself. And if not because of genetic inheritances, some natural therapy can help. Two of my brothers are on blood thinners for sticky blood. One with lupus. The sticky blood preventative enzyme is natto k. Natural may not be a total cure. I still have some complaints, but doing ok. Good luck.

  • Mandy, Mandy, Mandy.

    Please let me explain some of my understandings. I was recently diagnosed in August 2013. I have a need to understand my body and what its doing and I also prefer the KISS Principle (Keep It Simple Stupid). I suffered with swelling and pain in hands, wrists, feet and legs for 9 months before that. Tested for RA and Carpal Tunnel. RA negative but yes to Carpal but I wasnt a candidate for surgery until the the underlying swelling was resolved. I barely slept for 6 months with pain, swelling and tingling in extremities. May 2013 was first visit to Rheumy. She advised not unusual for negative RA results for 2 years. Suspected I was developing it so wanted to start Methatrexate. One shot thru my liver wacko so that was stopped. Two more months of suffering and 1 week in hospital. 2nd visit to Rheumy end of July. She took one look at me and sent me to be admitted to University of Alberta Hospital insisting they check for DVT Clot in right calf and for Lupus. 3 days later they confirmed birth. New Rheumy at this hospital was fascinated in me so took over my case (my age as I was 60, Cerebral Involvement-MRI showed large shadow in Brain). By this time I was in a wheelchair and could not read or write. Phsiotherapy helped this. I was finally out of the hospital by end of August 2013. the next month was a challenge as I needed to have someone to look after me (make sure I didn't fall down on my stairs, take my pills and eat regularly) My husband was a God send. The two nights he worked I stayed with my daughter and grandsons - that was fun!!

    The way I understood Lupus was that my immune system was going nuts, over active and trying to Kill me. My treatment was Plaquinil 400 mg daily, Vit D4, Prednisone 60 mg daily plus a chemo drug Cyclophosfamide every two weeks for 6months. I understood this was to beat my immune system down rapidly, for rest of treatment to start. Some hair loss occurred but I tolerated the Chemo very well. In fact I felt better during this time than I had for a year. Chemo was finished January 2014. Now I am on 200 mg of Plaquinel, 2000mg of Mycophenolate daily (immunosuppressant), diretic, blood thinner, 50mg Synthoid (Thyroid often affected by Lupus). Vit D3 as well I also take a sleeping aid at night if needed. I am off the steroid now just about a month ago. I will admit it now the drugs saved my life as I too have an aversion to drugs in my body and prefer natural remedies. My Rhuemy hopes to reduce the Plaquinel and Immuno suppressant further but he prefers slow and careful so I don't see any changes in the next year. I see him every six months.

    Keep and open mind and dont be afraid to try something new. You have nothing to loose and hey it might work. I am looking forward to life again. Wish you all the best. Hugs !!

  • Thankyou, yes I will talk it through, I guess it is a matter of trying new drugs etc. I have started physio so hopefully that may help. Hugs to you too x

  • Hi Mandymerritt, I can relate to a lot of what you've written. A skin biopsy confirmed discoid lupus with me, then very quickly my health went downhill. My bloods rarely show high lupus markers. My late sister was systemic, and given my sudden symptoms everything was put down to lupus, or reactions to the drugs they tried on me.

    In mid 2013, the 'ologists agreed to try a no drug regime, as by then it was just my skin and joints that were a problem. But this was agreed with the 'ologists. My skin improved a lot and for about a year I managed to get by on a lot of painkillers. But in mid-2014. the joint pains got worse and I began losing use of my hands. So I'm back on depomedrol and just started stelara for what they suspect is psoriasis. My dermy admitted a long time ago he didn't know what to make of my skin. Later biopsies concluded it wasn't discoid lupus. So we've gone down the maybe it's psoriatic arthritis route, with lupus ticking away in the background sometimes going into remission, sometimes flaring up.

    I understand the reluctance to take drugs. My weight yo-yo'd so much I'm zebra-fied with stretch marks. Couldn't sleep for months. Spent too much of my life on the loo, and too much on loo paper.

    Hopefully, you get to see an understanding consultant.

  • Have they suggested ciclosporine for PA? I've been taking ciclo for lupus and it has been amazing for the vast majority of symptoms. I know it has been used for PA great success, maybe worth mentioning it to your doctor - brand name Neoral.

  • Its just horrible. I dont want to risk my future health however I need to live a life now too and the side effects of the drugs along with the symptoms is just awful. I too spend far too much time on loo, they changed my drug to an injection for a while which helped my tummy. All the best and thank you for the reply.

  • Interesting. If you've had no response to steroids then either the drug dose wasn't sufficiently high or the positive dsdna was a fluke and you don't have autoimmunity. Instead of pumping you with lupus etc drugs, it would be worth exploring what else could cause your symptoms - by the way, what are your symptoms?

  • Hi purpletop. My symptoms are flitting joint pain, sun sensitivity with rash on face and chest, hair loss, fatigue, constant sore throats, breathlessness. I have had neuro problems in the past. I was diagnosed with Guirrenne Barre and ADEM (large lesion on the brain). I still suffer from neuropathic pain but that is unlikely to be related to lupus. I was put on steroids in the summer because I was seriously struggling with day to day life due to severe fatigue and breathlessness. I was in and out of hospital for tests but other than lupus there was nothing else to find. Had another lumbar puncture, MRI on brain and lumbar area. Other than a bulging disc which could be rubbing on the nerves running down my left leg there was nothing new to find (brain still showing lesion), the bulging disc was just a coincidence that they found it. Bloods at the time were showing ds DNA elevation. I say the steroids didnt work because I couldnt cope with them, my body was exhausted but I couldnt sleep and I was catching every bug that was going so I stopped them. When I went back for blood tests in September the ds DNA was within normal range and as I still felt awful I came to the conclusion that I would probably do just as well without the drugs (methotrexate and hydroxychloroquine). I have such bad side effects that living a life close to normal is difficult with them.

    I am still struggling along, I am no better really however I do not have the side effects which is nice. I am dreading my rheumy appt as I don't want them to think that I have no respect for what they believe is right however I am not prepared to stay on drugs when I feel like they are not helping. I have been questioning the whole lupus diagnoses but Paul has explained it very well. The last time I questioned it to the consultant nurse she told me she would send me to a counsellor as I was in denial :(

  • Hi there, just a little message to let you know your not alone in stopping your meds, I don't have any answers but wanted to let you know I've been pretty similar to you since my dx in 2012. I stopped mine on September last year and my Rhumy apt is tomorrow and I have to tell him I've stopped. I don't want to take chemicals into my body that do nothing for me. Like you I feel no different without them as I did with them so I can't see the point in putting up with side effects, as I suffer with a bad tummy on them. I'm not 100% trusting in the medical system, not doctor kept telling me I had a sebaceous cyst on my neck (for a year!) when it turns out it's a problem with my perotid gland and might need it removing. Sometimes I feel like the gps play everything down and don't want to prescribe me anything, I had to fight for everything from them even though the hospital Rhumy wanted me to have stuff. But then on the flip side the hospital docs see pound signs above my head and have lists of stuff they want me on. So I've started listening to my body and doing as much holistic stuff as I can and just generally looking after myself. All the best to you :)

  • Hello Mandy. I'm so sorry that you are having this experience but don't fear you are not alone. There are quite a few of us who have fairly non-specific blood test results and who don't really have an airtight positive diagnosis. My results always, and I mean always, come back as borderline for everything so at different times I have been told that I probably have lupus, or possibly psoriatic arthritis, or possibly undifferentiated connective tissue disorder, or possibly............. You get the picture. I have been prescribed the same set of meds that you have been working your way through and have had to stop each of them in turn because I suffered from really horrible side effects. This means that I am not on any meds which are specifically aimed at reducing the way my immune system attacks me but only on meds for inflammation and pain control. I don't think you have said what your relationship with your GP is like but if you are fortunate enough to have a really understanding GP, as I must say I am, then you ought to go and have a chat with them. The medics really do need to know that you are off your meds so that you can be properly monitored. I had to have regular blood tests when on methotrexate and some of the other immunosuppressants and when it became clear that I couldn't tolerate them my GP kept me on the blood test regime just to make sure that my kidneys, liver, etc weren't getting damaged by whatever it is that I actually do have. All the best to you and keep on fighting.

  • Hi, I have a great relationship with GP however I have decided to only visit him now if things are seriously bad as I worry I am coming across as a hypochondriac. This last year he has sent me back and forth to hospital for different things and signed me off work when I didn't want him too but it gets embarrassing particularly when test results come back relatively ok. I would like a year without appointments and to struggle on without meds. My view is that if it's something serious it will get worse but until then I'll manage drug free. I have a lupus sle diagnoses but I question that. I will go and see rheumy in a couple of weeks and tell her how I feel as suggested on comments here. It really is a frustrating time and I often feel I am wasting people's time. Gp has been chasing me up to go for methotrexate blood test, as I have come off it I haven't gone to have one done.

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