Treating Lupus: A Physician-Patient Perspective

Yesterday I joined a new group:  We Are Lupus, at www.wearelupus.org.  It is made up of a few hundred people, mostly lupus patients, but also patients with some related disorders, and family members and friends of patients.   It promises to be a good forum.  It’s always good to have the company and wisdom of other people who share your experience.  I’m not really a support group person.  I don’t want to put it in my schedule, and I don’t want my local friendship base to be built around a disease, but I do like having folks to talk to online.  Lupus can be very isolating (like many chronic illnesses), and the online connection is invaluable.

 

Seeing so many people with their descriptions of illness and treatment made me interested in reviewing my treatment philosophy regarding lupus.  Here goes!

First, do no harm.  Straight from the Hippocratic Oath that we all take when we graduate from medical school, these words should underlie the therapy for every illness.  Unfortunately, all treatments-herbal, behavioural, surgical, prescribed medicines-have possible side effects and undesired consequences.  That means we have to keep in mind the balance between possible bad effects and the potential for doing good, and also (less frequently considered), the balance between possible bad effects and the consequences of not treating at all. 

In lupus, there’s rarely a situation where not treating at all is acceptable.  Lupus is a disease where the body’s immune system sets up powerful inflammatory responses against our own tissues.  Inflammation has consequences.  The short-term consequences are pain, stiffness, swelling, fatigue-things all lupus patients are familiar with.  The long-term consequences are silent but deadlier-blood vessel damage and organ damage leading to strokes and heart attacks (the number one killers of lupus patients), kidney failure, liver failure, brain damage, and so on.

So, we can’t just leave it alone.  We need to treat.  How do we do that?

Use medications in stepwise fashion, giving time to see the results.  Most treatment begins with NSAIDS (non-steroidal anti-inflammatory drugs like naproxen, etodolac, and celecoxib.  If disease is more severe, the treatment may also include prednisone.  Other medications are added in a fairly orderly fashion.  With the exception of NSAIDs and prednisone, lupus medications take time to act, and the results of adding a medication may not be fully evident for anywhere from 2 to 10 weeks.  It takes patience, but overmedicating can be avoided by giving each additional medicine or dose change the time required. 

Use the least amount of corticosteroid medication that works.  At the beginning of treatment, corticosteroids like methylprednisolone and prednisone may seem like life-savers.  They work quickly, and large doses can turn a severely painful, highly active flare into a day at the park in short order.  Beware.  Corticosteroids have a myriad of short- and long-term effects that can be life-threatening by themselves:  stomach ulcers, osteoporosis, diabetes, increased severity of infections.  These are not drugs to play with.  You shouldn’t alter your dosage or restart a prescription on your own.  When your doc prescribes a taper, work with her/him.  They’re trying to minimize harm. 

Use steroid-sparing medications.  While much of lupus activity could be controlled by simply increasing corticosteroid doses (sometimes to outrageous levels), that isn’t acceptable.  Other medications may be added to your regimen simply to control the disease without using higher doses of steroids.  Ideally, one should be on no prednisone, but an amount of 7.5 to 10 mg per day is the most we generally feel is “okay” for chronic use. 

Concentrate on controlling the disease activity, not the pain.  Most pain in lupus comes from active inflammation, therefore you can decrease or eliminate pain by controlling the disease.  That means a focus on getting the disease under control is crucial.  You can treat pain all day long, and might feel well because you aren’t hurting, but underneath the disease is sizzling and doing its damage.  Getting rid of the flares of inflammation is extremely important.  When you don’t have the disease controlled, your pain medication usage can accelerate to higher and higher levels, adding medication dependency or addiction to your list of problems.  No one needs that.  That said…

Use enough pain medicine to function.  Nope, this is not a contradiction to my words above.  Everyone needs to be able to care for themselves as well as possible.  Using enough pain medication to run a marathon is excessive and ill-advised.  Taking enough pain medicine to allow you to dress yourself and cook a meal and be productive is reasonable.  Physicians have studied the best use of pain medicines, just like we study everything else.  When your doc tells you to put it on a schedule and prevent painful episodes, she/he knows what works.  Give it a try instead of being a pain medicine rebel. 

Use medicines that do double duty.  Depression is common in lupus.  As a matter of fact, lupus can cause all kinds of psychiatric syndromes.  If you have to take an antidepressant, consider that some of them will also decrease your awareness of pain.  That’s a good thing.  Let your doc know that you’re aware of this possibility, and discuss the options that are there for your individual case.  Serious thought should be made to getting that extra benefit.  Likewise, lupus can cause seizures, and some anti-seizure medications can also help with pain control-another double duty med possibility.  If your NSAID and prednisone cause swelling, and you have hypertension (a common combination in lupus), maybe your blood pressure can be treated with a diuretic (fluid pill) that will help both conditions. 

On the whole, you’re going to take lots of medicine for lupus.  Anything that lightens the load while serving the purpose is going to be welcome.

Don’t forget food benefits.  I’m a damn good doctor, well-trained by anybody’s standards (Vanderbilt University, Jefferson Medical College, Johns Hopkins Hospital).  Nevertheless, my nutrition training was minimal.  I’d call it “the pits” if I wasn’t afraid of being teased for using food puns.  (yeah, I’m funny!)  When I was diagnosed with lupus 16 years ago, I briefly skimmed the nutrition literature and saw some admonitions to avoid meat products.  That was it.  It took me ten more years to get seriously interested in more natural therapies for my illness.  By that time, the Integrative Medicine field had been advanced a great deal by the efforts of Dr. Andrew Weil and others.  Recommendations for eating with lupus now included a comprehensive plan for an “anti-inflammatory diet”, and for the use of helpful spices like ginger and tumeric, which reduce inflammation.  This plan does contain the old “avoid meat products” instruction that I saw so long ago, but there’s a lot more to it.  It’s not difficult, it’s good eating, and it’s wonderful to help yourself without taking another handful of pills. 

Don’t fall for solutions that are based on simplistic explanations.  Suppose you know that lupus is a disease of the immune system.  There are lots of products on the market that claim to help your immune system, for example, echinacea.  You might think that if it “helps” the immune system, it is good for your disease.  Not so.  Your immune system is already overactive, and it’s doing things that hurt your body.  It doesn’t need help.  It needs to be reined in.  This kind of thinking, without the knowledge of all the underlying factors, can cause you to make choices that hurt you.  Anything you think of taking or doing should be checked with your doctor. 

Don’t fall for unproved treatments.  There is an association of physicians (only a few hundred out of the hundreds of thousands of docs in the U.S.) that practices chelation.  They claim that you can give intravenous agents that will bind up the bad, inflammation-producing substances in lupus patients.  Nothing has ever proved this to be a viable treatment.  This isn’t the only scam out there.  If a rheumatologist doesn’t suggest it and approve it, don’t do it.

Treat the emotional stuff.  I have said it before and will say it many times more-antidepressants and therapy have saved my life.  Lupus is a tough disease.  It causes lifestyle change that would challenge a rabbi.  It can cause physical changes in your brain that affect your moods.  It requires medication therapy that can affect your brain and moods.  It is necessary and completely worth it to deal with this and treat it.  Sitting alone in your room, contemplating the end of the world and/or suicide, is not acceptable.  You need your best brain to fight this disease.

Never give up.  I made my first diagnosis of lupus in a 20 year-old girl that I treated in dermatology clinic as a resident.  That was 1985.  Four major classes of medications that are effective in treating lupus have been developed since then.  Every time I’ve worried that I was getting to the end of the treatment possibilities, something else has become available.  Research is a good thing.  It is saving lives in lupus, and we will all benefit from it. 

 

Peace.

Advertisements

5 Responses

  1. Nothing to say, other than that was a fantastic post!!!

  2. refreshing to see a doctor taking the time to join and read the posts in a lupus group. i’ve often wondered what ever happened to the “First do no harm” thing! So I’m glad to hear your approach of using as little Prednisone as possible. If more docs took this approach, they would probably get less “rebellious” behavior from their patients.

    The 3rd flare I went into I was given small doses of anti-anxiety meds which made *all* the difference when i was on high doses of prednisone. I was thinking “not to be ungrateful but where was this the other 2 times I was climbing the wall and wanted to jump out of my skin?”

    I get so tired of docs who are so obsessed with saving my kidneys that they forget about the rest of me, suffering greatly with continued pain and horrbile steroid side effects. As I told one doc “i know i *have* to take it but i don’t ahve ot like it!” (meaning i don’t need the lecture abotu why i’m taking it. i was trying to get across how unbearable the side effects of the prednisone were, and instead of him addressing the side effects, I got a lecture on why i need to take it. Having lupus for 16 years I already knew why i had to take it!)

    Eventually, my concerns were heard and i got the attivan. i’m not sure i could have stood one more minute in the hospital on that amount of prednisone if he hadn’t given me something to counter the effects.

    I also am surprised more docs don’t use diurectics, esp when our legs are swollen and we have high BP. i got diuretics the 2nd flare only. i’ve lived in a different place for each flare, and the treatments are not at all consistent.

  3. hey i got a question for you. and maybe you’re nto allowed to answer. but why are doctors trying to “undiagnose” people who have lupus? is there a quota that they are only allowed to diagnose so many people with lupus, then it raises a red flag to somebody, like writing too many pain med Rxs? what is up with this trend? and now you have to have conclusive blood tests to get a diagnosis, when there are no truly conclusive blood tests? pressure from the government to keep people from being able to get disability? docs not wanting to write “lupus” on the chart because they want to protect the patient from not being able to get life insurance? what is going on?? (this is not my problem, as I consistently more than meet the criteria, but it is a major trend in my lupus chat group).

  4. will life insurance pay out if lupus is the cause of death and this condition is not mentioned on initial application?

  5. does anyone know of a company that will insure a person with lupus?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: