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!

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.