Many of my blogs are inspired by comments I read on lupus sites. This blog is one of those. As is usually the case, I copied this post from my own website:
Lupus Patient Compliance
Figuring out why treatment works with one lupus patient and not another is a critical challenge for researchers. Different manifestations of lupus vary in their response to treatment protocols; ethnic background also seems to influence outcome. Obviously, in every case the goal is to get maximum benefit out of treatment. Of the many factors that come into play in a clinical setting, one that has received some attention is patient compliance--that is, the consistency with which a patient follows a prescribed treatment regimen.
This would seem to be a no-brainer: if you don't take your medicine you can't get well. However, understanding the role of patient compliance in treatment success is not that clear cut. The ability or willingness to follow through on a treatment plan can be affected by education or culture, and it's not easy to sort out these aspects of patient profile. It would be extremely helpful for researchers to understand whether ethnic background, cultural setting, poor patient compliance or another element significantly contributes to more successful outcomes. Often, all of the factors are so intertwined that even the most well-designed studies have trouble separating them.
Despite this blending of influences, one thing does come through in the studies: patient behavior can affect treatment outcome. This is really important for us to know. Though patients are not responsible for being ill and generally cannot by themselves change the course of their disease (and sometimes, even with help, cannot do this), they can participate in treatment so that a successful outcome is more likely.
A few years ago, when I wrote my first book about lupus, I described my love/hate relationship with prednisone. Before this treatment option was offered I suffered without relief through frequent flares and worsening symptoms. And yet--when the appropriate medication was finally prescribed, I resisted. I resisted because I had read so much about the dangers of prednisone. And I resisted for reasons I did not completely understand.
We all come to illness with a set of personality traits. In my case, because of a rather challenging childhood, I was (am) stubborn. I never accepted other people's estimation of my prospects for a good future, because those prospects seemed so poor. Ignoring every realistic appraisal of my chance for success, I pressed on.
All that obstinacy worked. While I didn't blaze pioneer trails, I did make a life for myself, a relatively contented one.
So when lupus intruded, I saw it as just another challenge, to be confronted in my usual style. But in insisting upon going my own way, I wasn't fighting lupus; I was working against myself.
I think, for a lot of people, the resistance to medication partly reflects a desire to maintain control. But this can be a misguided and counterproductive impulse. The best control we can hope to exert over our disease will probably come from learning about it and participating with our doctors in forming a treatment plan. Medication is a tool we use to help ourselves; it is not something that is done to us--it is something we choose to do in order to fight the real enemy: lupus.
Research on patient compliance in lupus has not yielded consistent conclusions, though some studies do outline the role of patient compliance in outcome. One article, "Treatment adherence and clinical outcome in systemic lupus erythematosus", in the journal "Rheumatology", suggests that not only does patient compliance increase the chance of treatment success, but compliance is more likely to occur when doctors and patients collaborate.
References to numerous studies is contained in the "Rheumatology" article. One that is discussed, "Morbidity of systemic lupus erythematosus: role of race and socio-economic status" from the "American Journal of Medicine", 1991, finds a definite correlation between poor adherence to treatment plan and severe renal disease.
While we as patients should understand that compliance with a treatment plan is probably in our best interest, doctors also must understand their role in promoting our willingness to comply. In a National Institutes of Health publication, "Lupus Erythematosus, A to Z" , the authors state: "People with lupus should work with their doctors to develop their medication treatment plan. Patients should thoroughly understand the reason for taking a drug, its action, dose, administration times, and common side effects." Another article, in the journal "Rheumatology", cites research which found that lupus patients "...who participated more actively" in their treatment plans "...accrued less organ damage over a median follow-up period of 4.7 years".
With lupus--or any chronic, incurable disease--so much is determined by factors outside of our reach. The one thing we may have some control over is ourselves (although, when lupus is raging, cognitive compromise may interfere even with this). I think it's clear that we cannot afford to be casual about compliance with treatment. We, as partners in our own care, should cooperate in developing a treatment plan, and once we are on board, give it everything we've got.
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lupuswriter
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That would be great if the medical profession would inspire trust in us sufferers, sufficient trust that when we place our health in their care, it will be respected and preserved to the greatest extent possible. Unfortunately many sufferers on this forum have met doctors, specialists, or nurses who do not understand this disease, are not willing to inform themselves about it so that the most appropriate treatment could be applied, or do not take into account the patient's own assessment of his or her symptoms.
In that situation, the patient has nothing left but rely on their own understanding of what is best for his/her health and takes decisions on that basis.
I disagree that refusing to take medication is a means to take control. In a situation such as the one described above it is the only way in which a patient can hope to remain alive. Whether that patient is sufficiently knowledgeable to make that decision is irrelevant, the patient feels that there is no one else left who can take that decision, as the trust in the person who is supposed to know better is broken.
I fully support the view that the doctor etc and the patient should work together to arrive at the best solution but that will never be achieved with an unprepared and patronising medical personnel.
Hi, what an interesting blog post. I agree the ideal scenario would be that rheumatologists should strive to achieve an honest and open Dr/patient relationship whereby the pros/cons of the various treatment medications are discussed together and an agreement reached. Having recently changed hospitals and rheumatologists I now feel that I am lucky in that this has occurred and I do feel that I have been consulted appropriately and medication explained to me.
Like you, Lupus Writer, I too thought that I could tackle this in the same way I have done everything in life, with a kind of it won't beat me attitude. Time and the illness has taught me that I do have to work with it and not against it. With regards to the control issue I think that it may be in part due to fear. I fear going on steroids and yet I have accepted methotrexate easily (so far) whereas the information that I read on here re steroids such as weight gain, inability to come off them, personality changes etc is all quite daunting to me. Others may fear a different medication.
I also think like any illness it is all a bit of a 'journey' where we learn things about our personality and our own coping methods in a way that is probably very new to us. The ideal scenario is, therefore, for the consultants to explain how lupus is impacting on us as individuals and what is needed to prevent things from deteriorating further. We are then in a position to make an informed choice. I think having a choice re our meds is so empowering, particularly as so often we have to surrender to this condition.
There may come a day when I have to accept steroids as it is the only way forward with regards to treatment........but I would not refuse a med just because I wanted to have control over a situation. For me it is about knowing what I can deal with at any one time. I think we are all different individuals with different personality traits and circumstances so it is only right that we all do what is right for us at a given time. The best the medical profession can do is be honest, open, and inform us of what will occur if we choose not to take a certain medication.
I think you explain the process of acceptance and participation very eloquently. We have to accept that we are ill and we have to assume responsibility for addressing this challenge. The last line in your comment pretty much sums up the ideal patient/doctor dynamic. Unfortunately, the ideal is not a situation all patients encounter. Let's hope some doctors are reading these posts and gaining insight from them.
I have sat for the past couple hours thinking about my experience with lupus and its journey, I think if my rhumy or his nurse had explained what was happening to me and what lupus was instead of just saying 'you have lupus, take these and I will see you on 6 th'. Then whenever I went to the Dr she would say 'not really sure what I can do for you now, best see the rhumy and mention all this at your next appointment'. So I took the bull by horns and looked stuff up myself its not the best way to learn what's happening to you. All everyone seems to do is issue more pills and no one takes any away, until lupus I didn't take tablets even for a headache. Last Oct I was sent to see a dermy who said the meds mask the illness and make it harder for them to see things properly. So on that note I stopped all med, never again the pain was worse than ever and the rhumy went off it. No one really tells me anything at appointments or why so many meds are needed, or if I will ever be able to come off them. Dr nurses and consultants need to take note we are people we are scared of what this is doing to us and we do need advice
Interesting. However, main 'compliance' issue with me is that I just react very badly to most prescription drugs. That is, over and above the known and accepted side effects. So most will give me migraines and constipation. So I have to find alternatives wherever possible.
However, most medics are, sadly, far less willing to be flexible than us patients, and resistant to working with us to find not only the most effective but also the most acceptable medications. So I see this issue just as much as a problem of medic flexibility as patient compliance.
my experience is that most of the rheumatologists are a bit sneaky and say one thing to your face and write something else to thier collegues. also some dont seem to understand that lupus can affect your thinking and psycology, they forget these vital things and believe then taht you are irritating and non comformist or difficult. to understand the effect taht lupus has on you is not just precsribing a whole cocktail of drugs and send you packing to netherland for a few months to get on with it...on your own. lupus for me is frightening and painful. i feel that as i look ok on the outside that people dont take my lupus serously. its been a difficult journey and tbh if it were not for this site i dont know where i would be.
I completly agree with all these blogs to a certain extent,and like coppernob,i cant tolerate meds well at all ,its certainly not a control issue,i would love nothing more than to pop a pill ,and gain benefit,i live in a body full of side effects on a daily basis and have done for years ,without medication ,throw in medication and im off the chart with side effects ,this has been the case for years before lupus diagnoses .Health is a whole,and medics cover one triangle of the circle ,i think they need to be trained to listen and accept that a patient usually knows their body best ,they should suggest what they recomend and truly listen to the patient for any fears or concerns ,also they should look to treat the management plan as a whole ,including conventional,and holistic treatment ,and most def treatment on an emotional level . I remember a consultant saying to me when i approached him with a holistic treatment plan as i had to many bad effects from the medications i was trying ,that i was doing this the hard way .My argument was,the meds at the time were poisioning me ,and i was worse than before ,so unless its a life or death situation then pain meds and holistic living as much as possible is my treatment plan .Lupus is part of me ,its what makes me... me!Im not fighting it but trying to be as gentle to it as i am to myself .What works for one doesnt always work for another .Great debate here guys ,happy friday :)))brave
Thanks lupus writer for your fascintating post. It's so interesting to read everyone's replies. My own experience has been like so many others who responded, ie no support or education from the health professionals. How are we meant to make informed decisions, & therefore comply to treatment, without this?
I consider myself very lucky to have a good rheumy at the present time. She listens to me & respects my opinions. She even said that I know how this illness effects my body better than anyone. Hallelujah! However, she is a locum. The 4th different one I have seen in the last year. So this is a far from ideal situation.
The work of charities like Lupus UK is vital to promote education & understanding of this illness. Not just in the general population, but with in the medical profession. Here's hoping that we are at the fore front of a better, more holistic approach to lupus treatment in the very near future.
Hi, Thanks for interesting posting - and responses. Like Brave and Coppernob, I am over-sensitive to many substances (chemicals generally makes my body systems play up) and over the years I have had to find other ways to treat my symptoms. I have had flares here there and everywhere, often starting in one place, then moving on to the next ..and the next - outside and inside.
I have had to learn about very many treatment methods to try and keep abreast with 'the beast' which has been with me like a towering shadow for most of my life. Now, I think I have finally cracked it. It has been a long, costly and not least bumpy road but, as we speak, I am the best I have been ..for a very long time.
Over the years not all my GPs and consultants have agreed with me, as I have insisted on making my own decisions but one or two have been wonderfully understanding and supporting. Like once, when I was down in the dumps and contemplating going into hospital during a bad flare - and when asking my then GP (who knew about my sensitivities) for advice. He said it would take about the same time for the flare to 'peter-out' in hospital as it would take with my own methods.
He was educated in Germany, so knew a thing or two about complementary medicine (lucky me!) and gave me the confidence to keep on treating myself and then checked up on me regularly (listening to my lungs after infections etc). My current consultant checks me about twice year. My recent set of tests were fine and it will be interesting to see what they will be next time (early autumn), as I have improved further.
Yes, living with lupus is a looong and often bumpy journey. It is good to know that we are not travelling alone. xxx
New to this site and finding all this advice invaluable! It would help so much if Gps and Consultants would point patients in the right direction to discover all the support groups that are out there and that being part of them is our own Cognitive Behavioural Therapy. I have been on all kinds of meds for the last 2 years after emergency treatment for Renal involvement - didn't even know what Lupus was ! Even after educating myself on the illness, it wasn't until l discovered this site and other support avenues, that l realised l was In Denial about my condition. Since communicating with fellow Lupies has helped so much , now l feel far more positive and able to accept things and begin to move forward - Thank You all so much, keep up the good work I may have Lupus - but Lupus hasn't got me !!!!
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