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Posts Tagged ‘joint pain’

Since being diagnosed with RA in 2009, it’s been an interesting process trying to find the right treatment combination. To date, seven biologics and four disease-modifying (DMARDs) medicines in various combinations and dosages have been tried. The DMARDS used in the past include the following:

Sulfasalazine – This was the first DMARD tried after diagnosis. An allergic reaction resulted in severe hives and cessation of this drug.
Methotrexate – Oral pills were used. Unrelenting and unbearable gastrointestinal issues precipitated an end to this trial.
Leflunomide (Arava) – This DMARD did not have much impact on RA symptoms.
Azathioprine (Imuran) – This DMARD did not have much impact on RA symptoms.
Methotrexate – Self-injections were used for the second trial of MTX. Injections were stopped about a year later due to evidence that they were contributing to migraines.

Rituxan (Rituximab) is the latest biologic and I’ve been on it for 1½ years. The typical suggested treatment plan is two infusions every six months but I’ve been on a schedule of two doses every four months. The last infusions were in October and November but it seems that its impact is not just not optimum. Joint pain, swelling, and fatigue are all on the increase and neck surgery six months ago coupled with an elbow surgery in the near future lend evidence that Rituxan alone is not keeping the disease in check. After a discussion with my rheumatologist this week, it was decided that adding another DMARD might help control the disease processes. There aren’t many choices left and my rheumatologist suggested trying Mycophenolate, or CellCept, in combination with the Rituxan infusions.

CellCept was originally developed to help organ transplant patients from rejecting their new organs. It works by suppressing the immune system. Now it’s commonly used to treat lupus but is also used for other autoimmune diseases including rheumatoid arthritis. As with many DMARDs, common side effects involve the gastrointestinal system. Blood counts can be impacted so regular blood tests are conducted. [1] There aren’t many published studies on CellCept although it’s been proposed as an alternate DMARD for those with refractory disease not responding to other treatments. [2]

A new treatment experiment begins. Hopefully it will bring some much needed relief.

[1] http://www.rheumatology.org/Practice/Clinical/Patients/Medications/Mycophenolate_Mofetil_(CellCept)_and_Mycophenolate_Sodium_(Myfortic)/

[2] http://www.smw.ch/docs/pdfcontent/smw-12441.pdf

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While waiting for the next treatment plan to be revealed by my rheumatologist this Friday, the RA beast seems to be running at will. Joint swelling, redness, warmth along with fatigue are at levels rarely experienced during this RA journey. And this means that pain levels have also increased. At one point a few days ago, finger joint pain induced wincing almost to the point of tears making me ready to pull out the “big gun” painkillers. Friends came over to play spades and it was difficult to hold the cards. Besides the regular squaking joints, joints that tend to lay low, rarely speaking that RA is there, are now screaming loudly. Such was the case a few days ago when the elbows were quite conspicuous. Laying down to bed was anticpated in an effort to get some much needed rest. But the pain was too great. Adding insult to injury, knees and ankles joined in the chorus and throbbed incessantly in an effort to gain attention. Rest was not to be had. No amount of tossing or turning helped. I arose out of bed and stumbled back downstairs and turned on the TV. Of course, this was Thursday night and the live coverage of the tragic events in Boston were unfolding. Attention was rivted to the talking heads trying to get the latest scoop until I crashed from exhaustion somewhere around 2:30 a.m.

Sleep with RA can be an elusive goal. While not inspired by RA but likely by his own personal battles, a poem by the famous English writer Samuel Taylor Coleridge captures the “Pains of Sleep” while living with rheumatoid arthritis.

English: Image of poet Samuel Taylor Coleridge...

THE PAINS OF SLEEP

by: Samuel Taylor Coleridge (1772-1834)

Ere on my bed my limbs I lay,
It hath not been my use to pray
With moving lips or bended knees;
But silently, by slow degrees,
My spirit I to Love compose,
In humble trust mine eye-lids close,
With reverential resignation
No wish conceived, no thought exprest,
Only a sense of supplication;
A sense o’er all my soul imprest
That I am weak, yet not unblest,
Since in me, round me, every where
Eternal strength and Wisdom are.
 
But yester-night I prayed aloud
In anguish and in agony,
Up-starting from the fiendish crowd
Of shapes and thoughts that tortured me:
A lurid light, a trampling throng,
Sense of intolerable wrong,
And whom I scorned, those only strong!
Thirst of revenge, the powerless will
Still baffled, and yet burning still!
Desire with loathing strangely mixed
On wild or hateful objects fixed.
Fantastic passions! maddening brawl!
And shame and terror over all!
Deeds to be hid which were not hid,
Which all confused I could not know
Whether I suffered, or I did:
For all seemed guilt, remorse or woe,
My own or others still the same
Life-stifling fear, soul-stifling shame.
 
So two nights passed: the night’s dismay
Saddened and stunned the coming day.
Sleep, the wide blessing, seemed to me
Distemper’s worst calamity.
The third night, when my own loud scream
Had waked me from the fiendish dream,
O’ercome with sufferings strange and wild,
I wept as I had been a child;
And having thus by tears subdued
My anguish to a milder mood,
Such punishments, I said, were due
To natures deepliest stained with sin,–
For aye entempesting anew
The unfathomable hell within,
The horror of their deeds to view,
To know and loathe, yet wish and do!
Such griefs with such men well agree,
But wherefore, wherefore fall on me?
To be loved is all I need,
And whom I love, I love indeed.

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