Lupus arthritis and a string of things

Arthritis and difficult activities

Some of us lupus patients and those with similar types of inflammatory arthritis find that activities of daily living are sometimes nearly an insurmountable challenge.  Sometimes, with inflammatory arthritis, just doing normal everyday activities of life becomes much more difficult than we would like!  Lupus, psoriatic, rheumatoid, gout or other auto-immune or inflammatory arthritis can affect hands, wrists, elbows, shoulders, hips, knees and feet.  The inflammation and pain can impair normal functions, and can be very frustrating at times.

Thankful for what I can do again.

As I was driving to work this week, I pondered a list of some everyday things that lupus arthritis has affected in my personal life. Somewhat recently, I after ten years off of the NSAID Sulindac due to remission of joint inflammation, I started taking it again.  I was greatly relieved that, when added to my other lupus medications (Benlysta, plaquenil, prednisone) the resumed prescription NSAID relieved most of my arthritis symptoms.  The severity of increasingly painful and disabling arthritis in my hands was greatly reduced.

I have the use of my hands back!  I was thankful as I thought about these simple daily activities that I can do again or at least do better.  Just a couple of months ago these activities were at times excruciating and nearly impossible:

Mornings

holding a hair dryer
clipping fingernails
buttoning clothes
putting on pantyhose
buckling shoes
fastening a necklace or bracelet clasp
opening pill bottles
sealing a zippered sandwich bag
pulling the foil seal off a coffee creamer bottle
opening my favorite thermal Starbucks mug

Out and About and at Work

opening a car door
opening binder rings
using a stapler
opening a new bottle of soda
opening a plastic packet of Taco Bell sauce
carrying a shopping bag
walking through a shopping mall
climbing a flight of stairs
putting a case of soda into a shopping cart
pulling credit cards out of a wallet
opening plastic merchandise packages

Evenings

turning the key in a stiff lock
cutting uncooked meat with a knife
turning on appliance switches
opening a soda can or bottle
turning the knob on my can opener
holding a heavy skillet
stirring stiff cookie dough
pushing down the faucet sprayer button
taking off boots
scrubbing dishes

Weekends or Anytime (some of these I still can’t do)

turning socks right-side out
doing the laundry
changing bed sheets
moping a floor
pulling weeds and grass in the garden
walking up stairs
washing my car
playing my violin

Vacations (these are still on the “no” list)

Walking through amusement parks in the daytime
Roller coasters
Canoeing (part of my past)
Hiking

My choice how to respond

When each of these actions is difficult and painful to do through out my day,  I have a choice how I will respond to the frustration and difficulty of the moment.

Can I make the pain go away in that moment?  No.

Can I by wishing it so, make my joints strong and healthy again?  No way.

Can I make my lupus go into remission, or better yet go away?  Certainly not!

However, I can adjust and do things in new ways, slow down, pace myself, and at times humble myself to ask others to help me with what I cannot do myself.

Sliver of light of God’s wisdom

I resolve to not let this minor string of daily inconveniences steal my joy!  Perhaps, if I can just borrow a sliver of the light of God’s wisdom, I can then see reasons to thank Him for these present difficulties.  Out of the little struggles of day-to-day life such as these, our character is formed.

Perhaps, a new list of things that I can still do, despite my lupus, could be prime mental fodder for my next commute.

Lupus and Benlysta – One year rheumatologist check up with B+ Benlysta grade

One year of Benlysta

This month will mark one year since starting Benlysta infusions for my lupus.  As mentioned before, my lupus is thankfully now a milder, gentler “monster,” and my overall health has improved markedly.  Most importantly, my symptoms of central nervous system involvement and my energy levels have greatly improved.  Now, my cognitive function is much more stable, my short-term memory has vastly improved and my analytical and problem-solving mental processes are “back.”  I have really enjoyed overall improvement in my ability to complete mentally challenging essential functions of my job as a government law office administrator.  Benlysta helped me continue working.

The progress of lupus improvement from monthly Benlysta infusions was slow and moderate, but cumulative.  At the one-year milestone, looking back at the state of my health then compared to now, there is an unmistakable difference.  In the eighteen months before starting Benlysta, I had come of near remission and my overall condition was deteriorating steadily, and was again threatening my work.  After a few months on Benlysta my lupus quieted enough that recurring steroid bursts were not needed, and my daily maintenance steroid dose was cut in half.

Before Benlysta

Before Benlysta, my worsening lupus symptoms were many:

• CNS lupus was extremely flared w/ increasing cognition, memory and analytical deficits
• fatigue and malaise were overwhelming
• joint pain and inflammation levels were high
• gnawing “deep bone pain” in the long bones of my arms and legs
• horribly itchy lupus rashes were out of control on my hands
• mouth and nose ulcers were almost constant
• malar butterfly rash, mostly showing up “peekaboo” more in the mornings and fading at night
• sjogren’s syndrome was  very active in mouth and eyes
• onset of intense peripheral neuropathy pain almost every night
• insomnia due to neuropathy symptoms

Now, after one year of Benlysta infusions, my lupus complaints are fewer:

• pesky, but much milder neuropathy pain several times each week
• insomnia from neuropathy is much less frequent
• arthritis inflammation in my hands running amok
• a handful of random discoid lupus rashes come and go on my hairline, face, neck and arms

Benlysta gets B+ grade

So, the doctor is continuing my treatment with Benlysta infusions, and is very pleased with the improvement of my lupus.  Although we both originally hoped in vain for approval of Rituxan, because of my past dramatic improvement from using that biologic drug, that is old history.  Now, Benlysta has done a good job of quieting my lupus and improving my health.  If I were to rate Benlysta’s performance over the past year with a letter grade, it would definitely earn a B+ rating.  [Although Rituxan comparatively earned an A+, the insurance company would not pay for it.]  Benlysta’s B+ is an acceptable, welcome outcome!

Sulindac for inflammation

I am re-starting the anti-inflammatory prescription drug Sulindac for my arthritis inflammation.  This is my NSAID of choice, since I cannot take over-the-counter aspirin, motrin or naprosyn due to severe adverse reactions.  I took Sulindac successfully for most of 25 years, and it very effectively controlled ballooning hand knuckles.  For the first time in years, I was able to stop taking it completely for the five years following my Rituxan infusions.  It is time to start taking it, once again, since Benlysta is not effective controlling the arthritis inflammation of my lupus in my hands.

Follow Up in 4 weeks

To address my current problems with peripheral neuropathy, my rheumatologist prescribed Lyrica (pregabalin) to help reduce nighttime nerve pain, without having to resort to taking powerful pain killers to get to sleep.  I was surprized when I my pharmacist told me that Lyrica is not on my insurance formulary, and the drug requires precertification.  I cringed at the $350 it would be without my insurance, so my pharmacist contacted my rheumatologist to get the pre-certification process started.  Hopefully, my insurance will coöperate and the  approval will go quickly.  I will follow-up with my rheumy in four weeks.

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.

drugs

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

NSAIDs

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.

Corticosteroids

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.

Antimalarials

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 #12 – Lupus requires multiple medicines!

Diagnosis and Treatment of Lupus:  Successful treatment of lupus often requires a combination of medications. A new treatment for lupus was approved recently, and nearly two-dozen clinical studies are underway to develop a full arsenal of treatments. My treatment plan and combination of drugs used to control lupus and its various symptoms has changed over the years to respond to the variations in my lupus activity, symptoms and organ involvement.

First, aspirin

Many patients with mild to moderate lupus are taking over-the-counter anti inflammatory drugs as a first defense in controlling the symptoms of lupus arthritis and its pain, stiffness and joint swelling. For years I was treated for arthritis of unknown cause, after repeatedly ruling out rheumatoid arthritis through many negative lab tests for it. My family doctor prescribed 10 aspirin per day, in trying to control my inflammation. This was about five years before my lupus diagnosis, when I was new mom in my mid twenties.

Next, Disalcid

Next, my doctor tried the drug Disalcid, after aspirin was inadequate and began causing bleeding from my mucous membranes.   Next, my doctor had me try many non-steroidal anti-inflammatory drugs (NSAIDs) bit I was unable to tolerate most of them. Naproxen caused sharp abdominal pain and Ibuprofen caused bleeding similar to the effects of aspirin.

Then, Sulindac

Eventually, my family doctor put me on an old seldom prescribed anti-inflammatory drug Sulindac because of my intolerance for all the other NSAIDs we had tried.  This was well-tolerated and seemed to control joint inflammation, and helped keep my knuckle joints from ballooning.  This drug was continued for over twenty years, even after my lupus diagnosis and treatment began with lupus medications, because it was still so well tolerated and effective.  Attempts to withdraw this anti-inflammatory medication over the years always resulted in the return of pronounced joint swelling.

Repeated steroid treatments

During those early pre-diagnosis years, there were recurring bouts of discoid raised skin rashes treated with topical steroid ointments and occasional oral and injected steroids.  The multiple use of steroids for the undiagnosed lupus symptoms became problematic, and the doctor began being concerned heavy recurring use of steroids was not medically responsible.  We were frustrated with no answer for my arthritis symptoms, mouth and nose ulcers, rashes and other symptoms before the diagnosis of lupus was finally reached.

After diagnosis, Plaquenil, Sulindac and Tylenol

First post-diagnosis treatments included Plaquenil, continued Sulindac, prednisone and extended-relief Tylenol medications.  For many years this was adequate with bursts of steroids or injections when symptoms would flare and increase from time to time.  There was a gradual worsening of my lupus over time, and eventually stressful life events helped trigger organ involvement in my central nervous system, peripheral neuropathy, liver and overall increased systemic inflammation, joint pain and broad spread lupus activity.

Eventually, Methotrexate and Imuran

For the next ten years, my treatment plan included adding weekly Methotrexate treatment and daily Imuran doses to control the more severe symptoms, but eventually even this combination of medications were unable to control my worsening liver and central nervous system symptoms.

Rituximab, remission and now Benlysta

I entered a clinical trial of the biologic drug Rituximab, and quickly entered into a five-year near remission of the worst of my lupus symptoms.   All my lupus medications were withdrawn except for baseline Plaquenil, occasional Tylenol and smaller short steroid intervention for occasional mild flares.

Recent stressful life events ended the extended remission, and recently the new biologic drug Benlysta became a mainstay of my lupus treatment.

Benlysta was approved by the FDA in March of 2011, and is the first new drug in over 50 years to be approved by the FDA for treating systemic lupus.  Prior to this, only three other drugs were FDA approved for systemic lupus:  Aspirin, Prednisone and Plaquenil.   I am currently receiving monthly Benlysta infusions and have experienced moderate gradual reduction in lupus activity with this medication.

Many drug combinations for lupus

Many other drug combinations are used to treat different lupus patients, and the drugs that they need change over time as their lupus activity and symptoms change.

To read more about drugs and combinations of therapies used in treating lupus, check out the information at the Lupus Foundation of America on this subject.