Friday, March 7, 2014

Planet Prednisone

I've almost forgotten what it feels like to take larger doses of prednisone. Whoooeeee.

It tends to make my mind race; make my body feel as though it could race; and then reality catches up with me after I've half started a zillion things. Yesterday an hour after slugging down my pred with a big ol' cup of coffee, I felt that delicious zing right down to my fingertips begin. I decided to do several loads of laundry, thought perhaps I should run out for groceries, then pick up Lulu's flea medicine at the vet, oh, and gee....I thought we were out of super glue.

But I reasoned that once I finished all those things I may be a tad tired, so before I began my errands I decided to write up a brilliant scholarly post elaborating on the specifics of the European League Against Rheumatism's (EULAR) disease activity index in the evaluation of Sjogren's syndrome found here. I cut and copied this table, then couldn't for the life of me figure what else to say about it. So here it is. Make of it what you will -- then please explain it all to me in a few weeks after I return to Earth from Planet Prednisone:

From:
Table 3
The EULAR Sj√∂gren’s Syndrome Disease Activity Index (ESSDAI): Domain and item definitions and weights.
Domain [Weight]
Activity level
Description
Constitutional [3]
Exclusion of fever of infectious origin and voluntary weight loss
No = 0
Absence of the following symptoms
Low = 1
Mild or intermittent fever (37.5°–38.5°C)/night sweats and/or involuntary weight loss of 5 to 10% of body weight
Moderate = 2
Severe fever (>38.5°C)/night sweats and/or involuntary weight loss of >10% of body weight
Lymphadenopathy [4]
Exclusion of infection
No = 0
Absence of the following features
Low = 1
Lymphadenopathy ≥ 1 cm in any nodal region or ≥ 2 cm in inguinal region
Moderate = 2
Lymphadenopathy ≥ 2 cm in any nodal region or ≥ 3 cm in inguinal region, and/or splenomegaly (clinically palpable or assessed by imaging)
High = 3
Current malignant B-cell proliferative disorder
Glandular[2]
Exclusion of stone or infection
No = 0
Absence of glandular swelling
Low =1
Small glandular swelling with enlarged parotid (≤ 3 cm), or limited submandibular or lachrymal swelling
Moderate = 2
Major glandular swelling with enlarged parotid (> 3 cm), or important submandibular or lachrymal swelling
Articular [2]
Exclusion of osteoarthritis
No = 0
Absence of currently active articular involvement
Low = 1
Arthralgias in hands, wrists, ankles and feet accompanied by morning stiffness (>30 min)
Moderate = 2
1 to 5 (of 28 total count) synovitis
High = 3
≥ 6 (of 28 total count) synovitis
Cutaneous [3]
Rate as “No activity” stable long-lasting features related to damage
No = 0
Absence of currently active cutaneous involvement
Low =1
Erythema multiforma
Moderate = 2
Limited cutaneous vasculitis, including urticarial vasculitis, or purpura limited to feet and ankle, or subacute cutaneous lupus
High = 3
Diffuse cutaneous vasculitis, including urticarial vasculitis, or diffuse purpura, or ulcers related to vasculitis
Pulmonary [5]
Rate as “No activity” stable long-lasting features related to damage, or respiratory involvement not related to the disease (tobacco use etc.)
No =0
Absence of currently active pulmonary involvement
Low = 1
Persistent cough or bronchial involvement with no radiographic abnormalities on radiography
Or radiological or HRCT evidence of interstitial lung disease with: No breathlessness and normal lung function test.
Moderate = 2
Moderately active pulmonary involvement, such as interstitial lung disease shown by HRCT with shortness of breath on exercise (NHYA II) or abnormal lung function tests restricted to: 70% >DLCO≥ 40% or 80%>FVC≥60%
High = 3
Highly active pulmonary involvement, such as interstitial lung disease shown by HRCT with shortness of breath at rest (NHYA III, IV) or with abnormal lung function tests: DLCO< 40% or FVC< 60%
Renal [5]
Rate as “No activity” stable long-lasting features related to damage, and renal involvement not related to the disease.
If biopsy has been performed, please rate activity based onhistologicalfeatures first
No = 0
Absence of currently active renal involvement with proteinuria< 0.5 g/d, no hematuria, no leucocyturia, no acidosis, or long-lasting stable proteinuria due to damage
Low = 1
Evidence of mild active renal involvement, limited to tubular acidosis without renal failure or glomerular involvement with proteinuria (between 0.5 and 1 g/d) and without hematuria or renal failure (GFR ≥60 ml/min)
Moderate = 2
Moderately active renal involvement, such as tubular acidosis with renal failure 
High = 3
Highly active renal involvement, such as glomerular involvement with proteinuria >1.5 g/d 
Muscular [6]
Exclusion of weakness due to corticosteroids
No = 0
Absence of currently active muscular involvement
Low = 1
Mild active myositis shown by abnormal EMG or biopsy with no weakness and creatine kinase (N
Moderate = 2
Moderately active myositis proven by abnormal EMG or biopsy with weakness (maximal deficit of 4/5), or elevated creatine kinase (2N
High = 3
Highly active myositis shown by abnormal EMG or biopsy with weakness (deficit ≤ 3/5) or elevated creatine kinase (>4N)
PNS [5]
Rate as “No activity” stable long-lasting features related to damage or PNS involvement not related to the disease
No = 0
Absence of currently active PNS involvement
Low = 1
Mild active peripheral nervous system involvement, such as pure sensory axonal polyneuropathy shown by NCS or trigeminal (V) neuralgia
Moderate = 2
Moderately active peripheral nervous system involvement shown by NCS, such as axonal sensory-motor neuropathy with maximal motor deficit of 4/5, pure sensory neuropathy with presence of cryoglobulinemic vasculitis, ganglionopathy with symptoms restricted to mild/moderate ataxia, inflammatory demyelinating polyneuropathy (CIDP) with mild functional impairment (maximal motor deficit of 4/5or mild ataxia),
Or cranial nerve involvement of peripheral origin (except trigeminal (V) neralgia)
High = 3
Highly active PNS involvement shown by NCS, such as axonal sensory-motor neuropathy with motor deficit ≤3/5, peripheral nerve involvement due to vasculitis (mononeuritis multiplex etc.), severe ataxia due to ganglionopathy, inflammatory demyelinating polyneuropathy (CIDP) with severe functional impairment: motor deficit ≤3/5 or severe ataxia
CNS [5]
Rate as “No activity” stable long-lasting features related to damage or CNS involvement not related to the disease
No = 0
Absence of currently active CNS involvement
Low = 1
Moderately active CNS features, such as cranial nerve involvement of central origin, optic neuritis or multiple sclerosis-like syndrome with symptoms restricted to pure sensory impairment or proven cognitive impairment
High = 3
Highly active CNS features, such as cerebral vasculitis with cerebrovascular accident or transient ischemic attack, seizures, transverse myelitis, lymphocytic meningitis, multiple sclerosis-like syndrome with motor deficit.
Hematological [2]
For anemia, neutropenia, and thrombopenia, only auto-immune cytopenia must be considered
Exclusion of vitamin or iron deficiency, drug-induced cytopenia
No = 0
Absence of auto-immune cytopenia
Low = 1
Cytopenia of auto-immune origin with neutropenia (1000 < neutrophils < 1500/mm3), and/or anemia (10 < hemoglobin < 12 g/dl), and/or thrombocytopenia (100,000 < platelets < 150,000/mm3)
Or lymphopenia (500 < lymphocytes < 1000/mm3)
Moderate = 2
Cytopenia of auto-immune origin with neutropenia (500 ≤ neutrophils ≤ 1000/mm3), and/or anemia (8 ≤ hemoglobin ≤ 10 g/dl), and/or thrombocytopenia (50,000 ≤ platelets ≤ 100,000/mm3)
Or lymphopenia (≤500/mm3)
High = 3
Cytopenia of auto-immune origin with neutropenia (neutrophils < 500/mm3), and/or or anemia (hemoglobin < 8 g/dl) and/or thrombocytopenia (platelets <50 mm3="" p="">
Biological [1]
No = 0
Absence of any of the following biological feature
Low = 1
Clonal component and/or hypocomplementemia (low C4 or C3 or CH50) and/or hypergammaglobulinemia or high IgG level between 16 and 20 g/L
Moderate = 2
Presence of cryoglobulinemia and/or hypergammaglobulinemia or high IgG level > 20 g/L, and/or recent onset hypogammaglobulinemia or recent decrease of IgG level (<5 g="" p="">

CIDP= chronic inflammatory demyelinating polyneuropathy; CK= creatine kinase; CNS= central nervous system; DLCO= diffusing CO capacity; EMG= electromyogram; FVC= forced vital capacity; GFR= glomerular filtration rate; Hb= hemoglobin; HRCT= high-resolution computed tomography; IgG= immunoglobulin G; NCS= nerve conduction studies; NHYA= New York heart association classification; Plt= platelet; PNS=peripheral nervous system;

After looking blankly at what I'd started to write, I decided that in fact it was time to head out on my errands. I poured myself a brimming travel mug of coffee, slapped a lid on it, and hopped into the car. And then returned to the house to put on my coat and tuck my shopping list into my pocket. And then after snapping my seat belt into the buckle, realized that I didn't have my keys. Lulu was completely confused by my coming and going and coming and going and coming and going.

Finally I was on my way. As I drove to the grocery store, it occurred to me that groceries were boring. And that shopping for groceries was boring. And a waste of all this perfectly good energy. So I pulled into one of those outlet stores that have the darndest things. I love those stores. An hour later, I left with three bags of junk unusual items that I simply couldn't live without. Like new cutting boards. And not one but TWO packages of super glue. And this beauty:


A battery powered shower scrubber! Brilliant! After doing all my shopping, I could scrub out both showers! And anything else that needed scrubbing! Maybe I could use it to give Lulu a bath, even!

I found myself hankering for something starchy to snack on. So I drove myself and my purchases through the Taco Bell drive-through and ordered one bowl of refried beans and cheese. I spent a whole dollar. I sped out of the parking lot smug in the knowledge that I hadn't caved and ordered three bags of their cinnamon crisps instead. And that in the process had only driven over one curb. Who designs those itty bitty lanes in drive throughs, anyway?

I felt myself begin to perspire as I drove, and tried to recall what I had planned to do next. I had forgotten that my list was hanging out right in my coat pocket, so drove directly past the grocery store  (Groceries? We don't need no stinkin' groceries! I was sure that I could whip up a gourmet dinner for John with canned tuna and whatever leftover vegetables were hiding in the crisper drawer of the fridge) and went all the way out to the veterinarian clinic because I vaguely remembered that Lulu needed.....something. I marched into the foyer, certain that these nice girls would help me figure out what it was that I came for. Thank goodness those nice girls did indeed sell me some flea drops. And heart worm pills. And set up an appointment for Lulu's next round of shots and routine exam.

As I climbed back into my car, I noticed with some disappointment that that lovely tingly feeling was beginning to diminish.

Rats.

And then suddenly.......it was gone. I was done. With everything. Lucky for me I was only blocks from my house at that point and within minutes was crashed on the couch surrounded by my purchases with my lovely Taco Bell refries sitting cold and forgotten in the car. Laundry? HA! Cooking a gourmet dinner? Forget it. And what on earth was I thinking when I bought this gadget for CLEANING? Pffft.

Funny how my day began with a bang at 9 AM and ended before noon. I think tomorrow I will skip drinking a gallon of coffee and take my prednisone with plain water. See y'all then....zzzzzzzzz......

4 comments:

LM said...

Though I can't explain that chart you uploaded, I can tell you I loved the post. Too funny. I often find myself biting off far more than I can chew (on a 'good' day) and ending up with only 2 of the six items crossed off the to-do list. Then, I say to myself, "Self, WHY did you think this was a good idea? What gave you the notion that you had limitless amounts of energy to accomplish all of these things?" This is when I give up, drive back home, drag my three bags into the house, force myself to put anything cold into the fridge, and then fall back into my lovely chair. Ahhh...I love that chair. Take a rest and you'll be ready for great things, tomorrow. Okay...maybe you'll be ready for one great thing.

Belinda Beaver said...

I love this post! lol, your prednisone induced frenzy reminds me of when I was on it, and why I no longer am! Besides the constant, crazy thoughts and body feeling like it wants to go a million miles an hour, I'd have the "shakes/buzz" also and didn't bode well while driving. I had two minor accidents with the brand new car that now sports scrapes in a couple of places. After the second one, I said I wasn't driving anymore til I was off of it. Enjoy your day!

Heda said...

What the heck? Seriously, if you put on three kilos you need to reconsider because obesity has bigger problems that even serious autoimmune. I know I'm in the minority and I don't care. Have you considered long term low dose antibiotic therapy? For example Plaquenil is a low dose antibiotic. Lots of folks have a strong reaction to this therapy and stop. But sadly they are the ones who are most receptive to this therapy. Personally given the choice between prednisone and low impact long term antibiotics I know what would choose. But hey ho, not my bees wax and I don't care what anyone else either chooses to do or any opinion they may have about what I choose to do.

Julia Oleinik said...

Heda, you're so sweet to worry for me. I'm trying to be a really good girl regarding over eating, truly I am. Right now I have actually lost a teensy bit of weight, even. I'll be done with the prednisone in a few weeks. I'm not completely writing off low dose antibiotic therapy, just giving the rituximab the old college try. I'll keep you posted. And thanks.

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