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| Dr. Joan T. Merrill, Medical Director |
So how did 531 people with lupus think they were doing? 69.2% said that they have 3 or more flares each year. The most common problems reported included fatigue, arthritis, muscle pain and skin rashes. More than half of the participants reported depression. When asked about current medications, only 44% said that they were satisfied and 45% reported that their treatments impair daily activities or work.
But when I ask my patients how they are doing, most will say pretty well. Maybe they will report some symptoms, but will often blame the weather or stress, making it easy for me to assume that that nothing important happened. But in a busy clinic, that may be exactly what I want to believe. So most of the time, the medical visits with my patients are pleasant and fairly routine. And if you look at the medical literature, you are unlikely to see reports of more than one or two mild-moderate flares/year per patient.
Well, we know that the patients disagree about that. In fact, several studies of lupus have found that patients opinions on how they are doing are completely mismatched with those of the doctors. Doctors who work on clinical research express frustration that patients have trouble differentiating chronic damage or depression from lupus flares, and the disconnect between doctors and patients opinions is often attributed to this. But are we certain about who is making which mistake?
Most clinical trials in lupus find that only 40-50% of patients meet the cutoffs we (the doctors) set to define improvement. What do we think is happening to the other 50-60%? Are doctors missing lupus flares because we are not as good as we think we are at recognizing what is lupus and what is “other?” Another poll of patients with lupus was performed by the pharmaceutical company GlaxoSmithKline. This survey found a three way breakdown of communications, with patients minimizing their symptoms both to their doctors and their families. This can’t be helping the doctors to recognize flares. What can be done about this?
It might be difficult to make doctors listen better or to convince patients to risk the emotional discomfort of complaining. But what if there was an efficient written tool to accurately track symptoms and responses to treatments, both from the doctors and the patients perspectives? This might be set-up to clearly distinguish lupus problems from non-lupus problems and supplement information that is lost during intermittent, time-limited clinic visits. The Lupus Foundation of America is dedicated to solving the cruel mystery of lupus and developing tools for patients and doctors to improve communication. We welcome input about what you think and what type of tools would help ensure successful communication with your doctor. Leave your comment below with your ideas!
28 comments:
Great idea for a checklist form to lead us to objectively evaluate our symptoms as they are occurring. Very useful if we patients will document our symptoms as they occur rather than trying to remember what happened when while sitting in the waiting room day of the exam.
A tool to track symptoms daily would be wonderful. A quick list on a smart phone app where a daily record is kept and can then be tallied or graphed to show the doctor would be great. Often I find there can be 1-3 months between dr. visits and I'm most likely to report current symptoms, not an overall picture over the elapsed time.
There is a great free app called MyRA. It is a tracking tool designed for Rheumatoid Arthritis patients. They can take this with them to their doctor appointments to communicate better with their physicians. It allows you to track how you are feeling that day, what meds are taken, what labs are done, the level of your fatigue, the amount of activities you do and also reminds you to track by sending you a reminder each day,asking how you are feeling today! There is also a
diagram of a person where you can track which joints are hurting you as well as the severity.
Since I have both SLE & RA, I track both conditions by using the free text areas. Until a Lupus app is developed, tbis is a good one to use. It also tracks monthly reports from the info.
I have lots of flare ups. In fact, I think I might chronically be in a flare up. But I am not as bad as I was before I started my lupus medication, so it must be working, right? So when my doctor asks how I am I say "OK. I feel better." What more can they do than put you on lupus meds?
Stacy Reynolds,
They can do a lot more than put you on medications! Especially if you're treated by a rheumatologist. Rheumatologists see all different kinds of patients with all different kinds of symptoms--as well as solutions. If your doctor knows you're having a particular problem, for instance, difficulty sleeping or photo sensitivity, he knows how other patients may deal with those issues and can offer suggestions on how to better manage them. Also, telling your doctor everything that's going on gives a more accurate accounting of your disease progress, which can be helpful for future treatment plans. If you explain how you're actually feeling, your rheumatologist has more information to create a treatment plan that is most effective for you. It's equally important your doctor knows how your lupus manifests itself so complications can be found and treated before getting out of hand. Plus, there's the added benefit of helping other patients; having all the information is how doctors discover patterns, which leads to a better understanding of all the problems lupus can cause and how best to handle them. Good luck!
I promise myself after every rheumatologist visit that I am going to track my symptoms better, as I tend to do exactly what Cindy Cooney said and only remember the most current symptoms. I would like an app with a body diagram so I could mark where the pain/discomfort is and what level of pain (1-10).
I think a check list would be great to track symptoms. Also, more reaching from support systems. My rheumatologist, Dr.Cory Pittman is fabulous. He looked at all my symptoms and my history and diagnosed me. It has been a very rough path! I am just starting to have more good days than bad. I was diagnosed in January 2013. I am past the normal age group.
I have a great health care team, rheumatologist, hematologist and primary care doctor-they work together and are trying to get me to a less symptomatic life of lupus.
For the last couple years, my rheumatologist has used a check box/circle survey that has to be filled out before each appointment. It's detailed with location of pain, pain level, general symptoms, personal changes that might cause stress and flares. I get annoyed having to fill it out each time, but realize now she is on the right track for better diagnosis.
My difficulty as a patient is trying to distinguish symptoms between RA/SLE, Crohn's, and Stage II Kidney disease...one tends to annoy the other. I deal with 5 specialists and each has their own way of communicating...usually just talking. I always have a list of questions ready before I go.
Since I'm not too successful matching symptoms with specialist, I've found it's better for me to use my rheumatologist to direct my care to other doctors since I normally see her the most.
I think the idea of a standard tool to help SLE patients monitor their disease is an excellent idea. Part of the reason patients say I'm doing ok is most of us were raised to soldier on and not focus on pains & symptoms (told focusing only makes them worse) so by the time your doctors appointment rolls around it is hard to recall what and when.
I often resolve to journal my health status but usually discontinue it after about a week. Plus what doctor wants to read 1-3 months worth of journaled pain and other symptoms. Hopefully any tracking mechanism would also include the capacity to aggregate the data and determine meaningful patterns for patients.
Janine Lane,
A few weeks ago I was reading about a new medication and ended up on the GlaxoSmithKline website. I signed up for this free journal tracker thing for lupus patients. (I threw everything else away, mostly brochures for meds I don't take.) Anyway, it's actually quite helpful; has lots of different suggestions. One that I have found to be helpful, is the red and green stickers. You just put a red dot on the calendar for a bad day, a green one for a good day. That way, you can just open it to the month and have a quick glance so you can get straight to the details of why you were having a red day. (If that makes sense.) You could do something similar on just a regular calendar, too.
Barb Ignatowicz,
My rheumatologist does the same thing. He said it is more helpful than anything else in tracking progress. Lab results don't always tell the whole story; blood counts can't say how you're feeling. With conditions like this, how you're feeling is the best indicator.
One of my husband's biggest problems is with his skin. But when he mentions it to his rheumatologist, she tells him to see a dermatologist. Is this the usual response?
Thank you all so much for your comments so far!
@Anonymous 9/5/13 6:21pm: people with lupus do see dermatologists as part of their healthcare teams.
I have been to a number of rheumatologists. They all ask about a rash. I don't have a rash that shows unless I am warm. My rash is just capillaries that have grown close to the surface of the skin. That rash is the LEAST of my problems--it is not a problem at all, actually. I have also been to three different support groups, and a number of lupus-related gatherings, and I have NEVER seen a person with an obvious rash. When I said that to my latest rheumatologist, she said, "I haven't either." But still, at every visit, she asks about a rash. It makes me want to scream.
Why doesn't she ask:
1. How many days per week/month do you feel like you want to do nothing but lie in bed?
2. On "good days," how many hours do you need to rest, or how many times do you need to rest?
3. If you were not taking pain pills, where would it hurt most?
If I spent much time in the sun, I would, I think, look pretty red, and in time, I think, those capillaries might start growing on top of each other and result in something more than just redness. But I know better. I stay out of the sun, I wear big hats, and I use sunscreen--not because I get red in the face, but because five or ten minutes in the sun puts me in bed for a day or two or three, feeling really sick and unable to do anything without forcing myself to do it.
I think questions about a rash could be helpful for the initial diagnosis. Before I knew what was wrong with me, I had developed a very red throat and neck and wondered why. (I didn't have it on my face because I had noticed, years before, that the sun was doing bad things to my face and I started using face sunscreens every day.) After I was diagnosed, and learned to stay out of the sun, the red throat gradually disappeared.
So, please, can we put the "rash" in perspective?
Reporting how things have gone for the past several months is a good idea. But I find that with my Rheumatologist (she is a very busy but brilliant physician/researcher), if I am seeming to be well at the time, she doesn't particularly seem to listen to what I have to say regarding historical experience. Oftimes I feel because I mostly have mild SLE, her heart isn't really in taking care of me. So even if there is a good tool, the doctor would have to listen and care about it.
Recently, I began writing daily notes on how I'm feeling in Google Calendar. I print out my notes from the last visit to the next and bring them with me to my Rheumatologist. He has found this very helpful in my treatment. He keeps a copy of my notes and adds them to the chart each visit.
I know that I try to be honest with my doctor when reporting on symptoms and flare-ups, but I've also been conditioned to hold a lot back after many years of family, friends, employers, and even other doctors accusing me of being a hypochondriac, or exaggerating, or even flat out lying about how much pain I feel or how extremely tired I am. I think keeping a daily journal is a terrific idea, if the doctor is willing to take the time to actually go through it with you. I often feel so very alone in dealing with what is happening to me, and in trying to communicate it to others, even medical professionals, it is almost like I am somehow wasting their time, complaining just for the sake of complaining. After several decades of just *sucking it up* it is not easy to get out of that mindset.
I am a firefighter an EMT i am new to the lupus diagnosis. I have seen several specialists and were told i can not take lupus medications due to the fact they compromise my immune system. I take narcotic pain meds or muscle relaxers but only once in a great while due to my job. I am tired all the time my muscles cramp daily. My joints swell and are painful with movement. I just deal with it, i guess i have no other choice I am trying to find other treatments. There has to be something out there, i also only have redness in the butterfly shape on my face not a rash. I have psoriasis on only one knee but only during high stress. Any suggestion would help greatly i am over paying high priced specialist fees for no help.
Plzzzzz share more info.... I'm not able to find this app as of yet.....
Right. That's what I say.. one its like I feel all 8 of my doctors get sick of me. 2 others have it worse then me. 3 ppl must get sick of me and my many problems. AND REALLY AS LONG AS I CAN MOVE I AM OKAY..IS THE WAY I SEE IT. I GET TOLD BY FAMILY ITS NOT ALL ABOUT ME, I do do a lot I don't just lay around..
I have found in the 39 years of having Lupus most of the time it doesn't do any good to tell them!! I feel like I'm wasting my breath!!!
Im in the worse flare up right now! Several months ago I had a hernia surgery and while in there they found cirrhosis of my liver. They have DC all my meds and I'm miserable. I'm depressed, fatigue, pain unbelievable and my rashes are all over my body now. I can't sleep because of the pain so I walk arround like a zombie now. I had to quit my job I can't stand the pain.they are trying to figure out what to give me but nothing so far. When I tell my Drs they tell me there isn't much they can do????? I don't know how much more I can take of this!!!!! I love the list idea because half the time I don't tell them much because I don't think they can do anything for me
Also the cirrhosis was caused by all the meds I have taken in the past. I do not drink at all
Carrie have you tried aqua therapy or acupuncture it helped me before
I am new to this flare thing as I was only told i had a connnective tissue disorder last year. And while I am sure I have had lupus for at least 20 years I am only now, just understanding what is classified a flare. I feel that due to stress, over working, exercising or forgetting medications I can have a flare up quite often. But in saying that If I went to my Rheum. or Doctor to tell them every time I ached or felt exhausted or had muscle weakness/ a rash flare/ Stupid Pleurisy pains or dreaded mouth ulcers from hell, I would be in their offices weekly.
What I have found is that while my medications clearly help (2 days off is not pretty). Communication with the doctors makes me feel like Im complaining all the time, I feel a burdon to my friends and family when my joints are so sore it hurts to walk. I sometimes just sit in pain because there is nothing further than the therapies I already do. Perhaps this is due to the quick visits, and copious amounts of work that health professionals have to do?
Regardless there are now APPS that are on phones that can track your flares/ symptoms and that show what factors play a part in causing issues. I use the App called SYMPLE it can be catered to your symptoms and can be downloaded into a graph showing your doctor/Rheumy where you are flaring.... because on the spot you may feel fine but a few weeks ago withering in pain.
I too have been conditioned to hold a lot back after many years of family, friends, coworkers, and even other doctors accusing me of being a hypochondriac. The statement I love most is "you look fine so you must be feeling better". Most people really don't want to hear about it so I keep most of it to myself. I do try to remember the worst days to report to my numerous doctors. But I have trouble remembering between visits. An app would be great particularly if your Doctors will look at the information.
Communication is really a very important aspect of socialization.
I am glad to find so many helpful information right here. Thank you very much.
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