One Patient's Positive Perspectives

Posts tagged ‘steroid’

Lupus and steriod effects: Hair loss, regrowth and accountability changing doses


Hair brushed forward over forehead shows right side hairline regrowth 4 months after correcting cortisol deficiency

It’s back! One purely cosmetic result of a gradual failed six-month long steroid withdrawal was the steady retreat of my hairline. During several months of prednisone withdrawal, hair thinned and dropped out the first half-inch of my hairline in the center of my forehead, and about an inch on both sides.

It is hard to say what was causing my hair loss.  Perhaps just lupus, maybe cortisol deficiency or perhaps a lupus flare caused by cortisol deficiency.

Isn’t this lupus adventure fun?

Hair brushed forward over forehead shows left side hairline regrowth 4 months after correcting cortisol deficiency

Hair brushed forward over forehead shows left side hairline regrowth 4 months after correcting cortisol deficiency

Over those six-months, my daily prednisone dose decreased from 5 to 2.5 daily. I quit the expensive out-of-network rheumatologist I had seen for 20 years, and started with a new in-network doctor last January.  When I saw her the first time, it was a full month after I went back on  higher steroids.

I immediately called my new doctor to set a first appointment, because the need for accountability to her had to be established as quickly as possible.  Within hours and days of resuming higher prednisone dose, I was drastically improving.

While general health and lupus symptoms leveled off quickly under the resumed prednisone dose, by the time I saw my new rheumatologist, I had reduced my daily prednisone to 7 mg, the normal level a body usually makes as natural cortisol.


Staying under a physician’s care

Not knowing if my decision to resume this higher prednisone level would be supported by my new doctor, it was extremely important to me to quickly place my lupus treatment back under the care of another physician.  While changing doctors and temporarily overriding my previous rheumatologist’s advice was a hard and prayerfully wrought decision, it was not what I really wanted to have to do.  I hold a very strong opinion that we must be medically responsible and accountable, and self-treating is dangerous territory.

In the month between my old and new rheumatologists, I saw my family doctor for accountability and filled him in, and spoke personally with the gastroenterologist who has treated my digestive system and lupus liver involvement.  Before seeing the new rheumatologist, I also checked in with my other doctors who are part of my treatment team.  Each doctor, lab, radiologist and hospital  forwarded my recent records to the new doctor to give her my full medical history before seeing me.

LA Updated Headshot

A little more hair, a little less forehead!

Over these past 4 months, since early January through April, my health has stabilized, my energy has returned and my missing hair framing my face is growing back.  My hairdresser and I marveled last week at my hair regrowth.  About 2 to 3 inches of new “baby fine” hair has re-emerged at the hairline all around my face, bringing it forward again about 1/2 inch in the center of my forehead and about 1 inch on the right and left side.  The slightly rounded “widows peak” in the center has disappeared, and my hairline is now filled out again.

Although talking about steroids and a little hair regrowth is anything but earthshaking or life-altering, it is one small aspect of the impacts of lupus and medications used to treat it.

Would I like to be completely off the prednisone?

A bit more hair and smile...

A bit more hair and smile…

Sure, but removing it entirely just isn’t possible without more careful monitoring and involvement of my new doctor. If and when my new doctor wants to try reducing my prednisone, I will be glad to cooperate.  Being with a doctor who is on my health insurance plan will make follow-up and monitoring more available and accessible during any future attempts of prednisone withdrawal.

Meanwhile, looking in the mirror at the blessing of at a bit more hair and a bit less forehead, makes me smile just a bit more, too.


Lupus when picking up paper hurts

turning pages was painful

My hands have given me a lot of trouble lately, and normal actions have been unusually painful.  Amazingly, I can play the piano without increasing my joint pain, but a few very simple tasks have been a different story! Today I was convinced it is time to get help.  Yesterday I found it hurt to rip open an envelope.  Today, I was sitting at my desk at work, turning the pages of a reference binder and realized that even picking up the pages and turning them was painful.  That was the last straw!

I think its time for help.  Lately I have had increasing trouble with buttons and zippers and have had to ask for help.  Even putting on socks or pantyhose hurts, but I am not about to ask anyone to help with those.  (Well, maybe my husband could help with the socks.)  Pushing down the button on the car door handle is almost impossible without using both thumbs, and opening snug jar lids or thermal mugs is downright impossible.  I have even had trouble getting my credit card out of my wallet.  The maintenance dose steroids are not helping.

It has been a long time since I last took non-steroidal anti-inflammatory drugs (NSAIDs) to control the inflammation in my joints and lupus arthritis, not since before Rituxan infusions several years ago.  Now, I think it is time to ask for them again.

I cannot take any of the over-the-counter varieties such as aspirin, ibuprofen or naproxen, so I need a prescription. Acetaminophen doesn’t count, since it is an analgesic and fever reducer, but not an anti-inflammatory drug, even though it gets grouped in with the NSAIDs.  After a major car accident almost 30 years ago, we tried all the different NSAIDs then available, and one I tolerated was an (old) seldom prescribed non-steroidal anti-inflammatory drug, sulindac.


After taking all the fancy new high-tech biologic drugs for my lupus that cost thousands of dollars per dose, maybe this old simple medicine that worked before will work again. Perhaps it is the small tree we missed in a vast forest of drug choices.  Sulindac had few side effects and controlled my ballooning joints effectively, long before I ever took methotrexate, azathiaprine, rituximab or belimumab for my lupus.

I’ve decided it is time to mention this new (old) idea to my doctors and see if they agree with my suggestion, or perhaps they will have a better idea.  I cannot accept the idea that lifting a piece of paper should  hurt!

Prognosis and Hope: Lupus Fact #28 – Normal life span expected with current treatment standards

Prognosis and Hope: With current methods of therapy, 80 to 90 percent of people with non-organ threatening lupus can look forward to a normal lifespan.  This puts about 10 to 20 percent of in a somewhat different minority group, but with proper treatment these people can expect to live long, full productive lives, too.

Medication standards for mild/moderate lupus

The prevailing standard of care for lupus patients in the first, low-risk group includes some baseline medications, specific standard diagnostic tests and common sense advice to lifestyle changes.  For the first half of the years since diagnosed with lupus, my treatments were also limited to the following baseline therapies.

Three basic drug standards for mild/moderate lupus


First, anti-inflammatory and analgesic medications are the most common drugs used to treat lupus, and sometimes the only drug patients need.  Inflammatory symptoms like arthritis and pleurisy respond well to these standard drugs.  Commonly prescribed analgesic and anti-inflammatory drugs include aspirin, acetaminophen, and non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen, naproxen, indomethacin, nabumetone and celecoxib.  Some of these drugs are hard on the stomach, or can created problems with a patient’s kidney or liver function and need routine follow-up and blood tests.  My NSAID  of choice has always been sulindac, because it was just about the only one I could tolerate due to my of inability to take all the other common NSAIDs.


Second, the Lupus Foundation of America (LFA) discusses the next class of drugs, corticosteroids used to treat flares in mild to moderate lupus cases, as well as in the most severe cases.

“Corticosteroids (also known as glucocorticoids, cortisone or steroids) are synthetic (man-made) drugs designed to work like the body’s naturally occurring hormones produced by the adrenal glands, in particular cortisol. Hormones are the body’s chemical messengers that regulate most of the body’s functions. Cortisol helps regulate blood pressure and the immune system, and it is the body’s most potent anti-inflammatory hormone. Corticosteroids prescribed for autoimmune diseases are different from the anabolic steroids that weightlifters and other athletes sometimes take to increase strength.”

“Steroid medications work quickly to decrease the swelling, warmth, tenderness, and pain that are associated with inflammation. They do this by lessening the immune system’s response. Prednisone is the most commonly prescribed steroid for lupus. Prednisolone and methyl-prednisolone (Medrol®) are similar to prednisone, and some physicians prefer to prescribe these if you have liver problems.”

steroids and cataracts

Long-term steroid use has many potentially harmful effects on a patient, and can lead to complications such as adrenal insufficiency, bone loss, cataracts, and other cholesterol related circulation problems.  My early years of moderate symptoms included times of flare that required the extra power of an occasional burst of steroids to intervene and shut down active lupus.  After many years that followed of daily low dose steroid use, my eyes are beginning to show the beginnings of cataracts, but I have not yet experienced other steroid-related problems.


Third, the LFA also discusses antimalarial drugs and their cornerstone place in the treatment of most lupus patients:

“Antimalarials are used in combination with steroids and other medications, in part to reduce the dose required of the other drugs. Antimalarials are most often prescribed for skin rashes, mouth ulcers, and joint pain, but also can be effective in mild forms of lupus where inflammation and blood clotting are a concern. Antimalarials improve lupus by decreasing auto antibody production, protecting against the damaging effects of ultraviolet light from the sun and other sources, and improving skin lesions.”

“The two types of antimalarials most often prescribed today for lupus are hydroxychloroquine (Plaquenil®) and chloroquine (Aralen®). Unlike the rapid response seen with steroids, it may take months before antimalarial drugs improve your lupus symptoms.”

“Side effects from antimalarials are rare and usually mild; they include upset stomach and changes in skin color. These side effects usually go away after the body adjusts to the medication. In high doses certain antimalarial drugs may damage the retina of the eye, causing vision problems. With the low doses of antimalarials used in the treatment of lupus, the risk of this complication is extremely low. However, as a precaution, people treated with antimalarials should see an eye doctor (ophthalmologist) regularly.”

plaquenil is baseline lupus & RA drug

This third drug, Plaquenil, has been one of my a daily lupus medications for the last twenty-years.  It was the first drug my rheumatologist prescribed for my lupus, and even now, I take it every morning and evening in times of remission and flare.  In the beginning, it took several months for me to see changes they made to limiting my lupus rashes, mouth ulcers and overall disease activity.

Plaquenil is also the first line drug of choice for patients with rheumatoid arthritis (RA), and I have a friend with RA who developed severe rashes while taking plaquenil.  Her inability to take this medication has made the treatment and management of her RA much more difficult, and much less successful that those that I know who tolerate it.  My friend and I often compare notes about our medications and treatment, since lupus and RA often use the same treatments and standard protocols.

Prognosis and future standards of care

Prognosis: normal life span

Even though my lupus has at times entered the higher risk area of organ damage involving my liver and central nervous system, I expect to be able to manage my lupus with the current therapies and lifestyle changes that optimize my health outcomes.  Daily exercise, plenty of rest, a healthy diet, sunlight/UV avoidance and staying within my limits all play a part, along with medications, in managing my lupus.

The exciting new biologic drugs such as the belimumab (Benlysta) I am currently receiving by monthly infusions, are emerging as likely parts of new and developing standards of care for lupus, now and in the future.

Diagnosis and Treatment of Lupus: Fact #9 – Pain and Anti-inflammatory Drugs

Diagnosis and Treatment of Lupus: More than 90 percent of people with lupus will experience joint and/or muscle pain that can be disabling. Lupus causes inflammation in the synovial tissues inside joints of fingers, wrists, feet, ankles and knees. As a result of this inflammation, non-erosive arthritis can develop that causes pain, stiffness and swollen joints.  Decades before my lupus was diagnosed, arthritis was one of the first symptoms of my lupus that appeared as early as my kindergarten years, and recurred all through high school, college and early adult life.

Medications for lupus pain and inflammation

Medications, both over-the-counter and prescription drugs, are used to used to control the pain and inflammation associated with lupus.  Medications for inflammation include non-narcotic analgesics/anti-inflammatory medications such as aspirin, ibuprofen, naprosyn, sulindac, and non-steroidal anti-inflammatory drugs (NSAIDs). Pain medications range from simple aspirin or acetaminophen to strong narcotics used for the most severe lupus pain.  Persistent or severe inflammation at times requires the use of steroid medications to reduce swelling in involved joint tissues.

The Lupus Foundation of America provides the following information on NSAID medications used to treat painful inflammation.

“Pain and inflammation are common in people with systemic lupus erythematosus (SLE). Sometimes these symptoms indicate serious organ involvement which may require powerful anti-inflammatory and immunosuppressive drugs, such as steroids (cortisone, prednisone).

At other times the inflammation is not as severe or does not affect major organs, and a less potent drug is indicated. In these cases, other milder anti-inflammatory and analgesic drugs can be used, especially a group of drugs called the non-steroidal anti-inflammatory drugs (NSAIDs).

While NSAIDs are not approved specifically for SLE by the Food and Drug Administration, they are approved for use in many musculoskeletal pain conditions such as arthritis and tendinitis, which also afflict people with lupus.”

See, the Lupus Foundation of America web site for more information on NSAID medications.

Treatment of lupus arthritis led to a diagnosis

Other approaches to dealing with pain may include various therapies such as applying heat, gentle exercise to stimulate pain-releiving nature endorphins, prayer, meditation, bio-feedback and other non-chemical alternative approaches to pain management.  The most effective methods for reducing and coping with my lupus pain include exercise, heat, acetaminophen and sometimes tramadol for the times I experience the most intense discomfort.

One of the reasons I first sought medical treatment for my lupus arthritis pain was because I was unable to take most over-the-counter NSAIDs, and on my own could find no relief for my pain and joint swelling.  I had intense pain all night, lost a great amount of sleep, and sometimes could not walk without experiencing overwhelming pain and stiffness.  Seeking help for my severe and unrelenting arthritis symptoms eventually led my doctors to find a reason for my symptoms, and this led to my lupus diagnosis.

Lupus is not my Sunday morning foe today!

Lupus is not my Sunday morning foe today

Here I sit on a Sunday morning, trying to overcome the aftermath of a tenacious case of bronchitis.  Ordinarily, my Sunday morning battle would be my lupus, trying to get coherent mentally and physically functioning enough to get to 8:10 a.m. choir practice at church, a  9:00 Sunday School class followed by a morning worship service.  Today, lupus is not my challenge.  It is strange to have something other than lupus be my medical challenge for so many days, and now weeks in a row. Today I am just battling asthma and bronchitis.   Somehow, in a strange way, it is almost refreshing to fight a different medial foe.

Using my asthma nebulizer

So, here I sit for a few minutes, writing my blog and using my asthma nebulizer machine to dilate bronchi.  Soon, lungs should be open enough to sit quietly through just the worship service at church without coughing and distracting everyone around me, at least for an hour or two.  At the end of last week, when my bronchitis re-surged and my steroid dose had dropped to normal, and I was suddenly getting worse instead of better, my doctor started me all over again on a second larger and longer burst of steroids.  I am finally getting over this enough to rejoin my social world safely (for me and for them) however briefly, at first.

My lupus symptoms have now been completely suppressed by the high steroid doses, so my joints are happy and my CNS lupus is quiet this morning.  Other than being unable to breathe well, I feel otherwise semi-decent.  However, being a merely one-service church observer and not a performer and singer will be a challenging enough of a role and adventure at church for me today. As a result, today probably won’t even include singing with the congregational songs or choir, and today certainly holds no plans for solos or duets during the services.

It is a different Sunday!

Besides, there should probably be no handshakes with others in the congregation today, I care too much for my friends at church to share the germs with them.  The afternoon will not include a visit at a nearby senior assisted living home where I play piano some weeks for their Sunday afternoon worship service conducted by a preacher from our church.  The residents there sure don’t want my residual bronchitis germs today!  A 4:00 p.m. practice for a ladies ensemble song is not in today’s plan, either, and nor will be the evening church choir practice at 4:30 p.m., nor the evening worship service at 6:00 p.m.  I won’t even be there to watch.

The day ahead looks like it will deviate significantly from normal Sunday routine.  It will be a great blessing to be back to church this week, and be well enough to at least attend the worship service.  I have missed church while so sick.  This is a different kind of Sunday morning adventure, but lupus is refreshingly not my Sunday morning foe today!

Lupus post-infusion infection, steroids and the E.B. effect

Post Infusion infection

Friday morning started with a 20 minute drive on the freeway to visit my rheumatologist, and ended with a stop for burgers, soda and fries.  In between, there were conversations with medical staff, a nice long visit with my doctor, and the administration of a hefty Kenalog and Celestone steroid injection.  A lupus flare had built up strength all week, while my energy waned.

After my Benlysta infusion on Friday last week, early this week Monday morning began with a burning sensation in my chest from another new case of bronchitis.  Asthma flared, large and small airways narrowed, and mandatory phone calls to my family doctor and rheumatologist were placed.  By the time of the rheumatologist visit, additional lupus flare symptoms piled up on top of the bronchitis: new discoid rashes on hands, forearm, forehead and hairline, a huge new infected mouth ulcer, bilaterally inflamed hand joints, growing malaise, and increased mental clouding and confusion (so much so that everyone around me was talking about it and starting to worry.)

Dust on the piano and coffee tables

Along with the physical lupus symptoms, the house was soon evidencing a few of its own… a pile of unopened mail on the desk, a white tile kitchen floor that really needed mopping, overflowing laundry baskets, an emptying fridge, and record dust fall measurements on the piano, hutch and coffee tables.

Outside, there was plenty of evidence of the flare, too.  Wednesday night ended by driving my vehicle right into the stucco wall bordering the driveway at the property line, grossly misjudging the distance and depth while turning into the driveway.  The first clue that I’d hit the wall was the sensation of the car vibrating and the sound of crunching stucco grinding into the vehicle rear quarter panel.  Then, my Grand Caravan was unable to move any farther forward because the corner of the stucco wall was wedged deeply into the side of the vehicle.  The damaged car was backed out into the street again to get it free from the wall.

Steroids have their place in the treatment of lupus.  A couple of days later, my doctor and I decided that I would not continue to drop my daily prednisone dose any farther, so I would stay at 5 mg. per day for the time being.  A steroid injection quickly began to make me feel better, so much so that everyone was soon talking about how the “E.B. effect” had set in, and teased me lovingly throughout the next day.  I became the object of much amusement to my family who describe the prednisone induced phenomenon as the “Energizer Bunny Effect”.  They have observed it many times before, after a surge of steroids was employed to shut down one of my previous lupus flares.  They love me, but think the way steroids affect me is funny!

The EB Effect in Full Swing

The behavioral impacts of feeling gleefully better and perky after steroids is a shock and often starkly noticeable, especially to the people nearest.  For them and for me, it was truly amazing to see and feel the difference!  Up before the sun rose, I was out and about buying food for a big Saturday breakfast, making coffee, scrambled eggs, cinnamon rolls and bacon before the rest of the household was even thinking about getting up.  The bacon aroma wafted back through the house to the bedrooms, and drew the sleepy occupants out to the kitchen.

They wiped slumber from their eyes and stood staring in disbelief, as they watched their suddenly transformed breakfast cook.  Just the night before, she was hurting, fatigued, very confused and struggling.  That next morning, their breakfast cook was unbearably gabby, perky, fast-moving and smiling while she  juggled skillets, knives, wire whips and a spatula!  They all concluded and decreed by consensus that the “E.B. Effect” was officially in full swing.

Downside of the EB Effect

As the hours passed, the E.B. Effect demonstrated its downside and aftermath.  18 hours of pep and vigor were followed by sheer exhaustion.  The perky little cook of the morning flopped down in a chair at day’s end, and collapsed.  Then, she awoke the following morning in full CNS lupus flare symptoms, and spent all of Sunday home from church in bed, sleeping, resting and recuperating from sheer exhaustion, bronchitis, underlying lupus flare, and ill-advised over activity in the face of the previous day’s false prednisone induced “energy.”

She had forgotten the age-old biblical adage, especially wise and proper after steroid injections, “moderation in all things!”

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