Funny Little Knitted Things in My Head

Yesterday was Monday, and in my life that now means Weight Watchers night.  I missed two meetings – the first when I visited my daughter, the second for the icy weather last week.  (Were we really worrying about icy roads one week ago, and it’s 72 degrees today?)  The crowds from the first of the year seem to be thinning out, one clear measure of the half-life of a New Year’s resolution.  I guarantee I did not lose a pound while I was out of town, so I was thrilled to find I’d lost 4.4 oounds since my last weigh-in.  The total is 12 and counting.  I can feel the difference.


I am back in the realm of medication side effects.  Remember when I tried to wean off Cymbalta last year, and had the awful brain-shaking side effect?  Well, I’m at it again.  I had resumed Cymbalta at a lower dose last summer when I became severely depressed (my depression has always been extremely chemical).  Now that prescription costs $118 per month, after my prescription plan pays its part.  I’ve stopped the Cymbalta again to return to good old generic Prozac.  $4 versus $118.  Easy choice.  Cymbalta had some pain lessening effects, but not $114 worth.  The feeling of something being loose in my brain is back, but it’s not as bothersome.  Maybe side effects are only as bad as the amount of attention you can give them.  I happen to have other things on my mind (yes, pun intended). 


I’ve got some mailing and photographing to do, and haven’t even had breakfast and meds yet.  I started late because of  this:  It’s the Victoria and Albert Museum, which has a wonderful website with endless photos of interesting textile pieces.  I was glued to the knitting for an hour.  I keep trying to tell you there’s art in my soul!  Yes, I know, and rocks in my head.



Treating Lupus: A Physician-Patient Perspective

Yesterday I joined a new group:  We Are Lupus, at  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. 



Medication Side Effects: The Good, The Bad and the Ugly

For one week I have been off of a medication which was prescribed by one of my doctors.  He instructed me carefully in a gradual taper of the medication, and in starting its replacement, also gradually.  He also told me about the side effects that I might feel as I tapered the old prescription.  This was a switch I requested, and it was well-planned;  probably the best you can do in trying to avoid trouble. 

I have to note that the medication was doing a good job at what it was prescribed for.  I’ve been on it a couple of years or more, and I never had a complaint about its effectiveness.  What did bother me is that, the longer I was on it, the more it seemed to cause some undesirable symptoms.  Finally the trade-off seemed to favor stopping the medication, trying something else. 

So…here I am a couple of weeks into this whole tapering and stopping process, and I feel like my head is buzzing.  No, I think I hear buzzing in my head, the kind you hear from a high-powered electrical transformer.  I can also hear my eyes blinking; it’s the sound of a tiny little tennis racquet swooshing through the air.  Or maybe it’s that blinking causes some funny brain reaction that makes me think I hear it.  Along with the sound effects, there are things rolling around in my head.  No kidding, I feel movement inside my brain, like a piece of cortex just decided to break off and migrate over to another lobe for a brief visit.  These feelings of movement come without warning, sometimes when I’m doing nothing, sometimes after a head turn or nod. 

Despite the knowledge that my eyelid blinks are silent and there aren’t any moving parts inside my skull, these symptoms have been very disruptive to me.  They are annoying, disconcerting, distracting, and uncomfortable-not painful, but they definitely have a physical component in the way I perceive them.  The biggest way I am affected in my daily life is that my mobility has been restricted.  I am comfortable driving in daylight if there is nothing else happening, but I haven’t felt like I could drive if there was heavy traffic or bad weather. 

I’ve had to tolerate all kinds of medication side effects over the years:  swelling, weight gain, stuffy nose, hair thinning, sleepiness, insomnia, increased infections…but this current episode is quickly coming close to rivaling my worst-the cough.  Several years ago a primary care physician started me on a medication for my blood pressure, which was slightly elevated.  Within a week of beginning it, I began to cough.  Actually, it wasn’t unusual for me to have a cough at that time of year from allergies, so there was no suspicion of a problem.  Over time, however, I coughed harder and more frequently and longer, with prolonged hacking spells that made strangers look from across the street and friends come running with glasses of water.  The cough was so bad that my doctor and I briefly entertained the idea of whooping cough.  He cultured me and ran blood tests for all kinds of infections.  I coughed so hard that one morning I felt a pop in my rib area, followed by intense, unrelenting pain; xrays revealed no fracture, so we concluded that I had ripped an intercostal muscle.  I could barely twist my torso, and could not get up from a lying down position, so I drove left-handed to the recliner store to buy myself a leather padded chair in which to sleep.  It was my first recliner and it cost more than my entire wardrobe, but it wasn’t a joyous occasion.  I coughed for three months. 

Finally, on a visit to another of my docs, my medication list was examined and the offending medication was brought to light.  My cough stopped immediately after I discontinued the drug.  Why couldn’t I see this myself?  Well, first, a good bit of time elapsed between starting the offending drug and realizing that I had a problem cough.  Moreover, I had put myself in someone else’s hands and trusted their judgment with my medicines.  I could not be objective about treating myself.  I had diagnosed that particular cough side effect in others, patients of mine, but I could not do the same for me.  All I knew when it affected me was that I was coughing and I hurt and I wanted someone to fix it.

Wow!  Now that I’ve revisited the Coughing Horror of 2003 (a particularly bad year for me all around), my current side effect dilemma has been diminished to an inconvenience.  I think I can get my laugh back!  Anyway, through it all I’ve been knitting.  I have only seaming and a little crochet slipstitch border to do on the contract piece.  I made a quick ribbed lavender cashmere hat to soothe my nerves, and I’m starting a chemocap to donate to the center where I get the great B-cell killer.  To quote my daughter’s friend A__ (heck, most of her friend’s names start with A), I will “be alright”.