Diary of Steroid Effects - May 09 onwards

Today (at long last) it appears the medical profession have given up hope of sorting my head problems and have agreed for a trial of half-dose steroids. I feel it prudent therefore to keep a daily diary and as it is specifically about steroids I decided to post it as a journal here too.

This will be a daily update of any condition changes regardless whether it seems directly related or not. Be warned I will be using graphic detail if necessary so if squeamish don't read on - you have been warned!

Firstly an update of where I am now. I have had "symptoms" for about 5 years and being investigated for about 3 years. For full details see my journal and profile to save duplicating everything
https://www.inspire.com/member-journal/entry/my-story-a-year-on-and-20-hosp ital-appts-later-but-still-no-joy/

My tremors are now under control with 30mg beta-blockers and I started 20mg steroids for an initial fortnight from today. My memory loss, confusion, fatigue, under & over sleeping, balance, aching limbs throughout my body, occasional IBS, poor and painful grip and dizziness have been pretty constant since leaving the hospital 5 weeks ago.

I will complete the diary every morning (or when next able to if later).

The percentages relate to:
Mobility - 100% = able to do a 5 mile walk across fields, 0% = stuck in bed
Cognitivity - 100% = no problems in conversation, pc use, planning or accounting, 0% = totally unable to speak, type coherently or focus
Daytime Fatigue - 100% = straight out of bed & knuckle down to tasks within an hour, 0% = unable to operate effectively without returning to bed & sleeping hours more
Overnight - quality of sleep

My additional medication is:
20mg citalopram (mild anti-depressant) taken each morning
7.5mg zopiclone (sleeper) taken when necessary (about 2-3 a week)
10mg cetirizine (hayfever remedy) taken daily during approximately April to August
15mg lansoprazole (stomach protection) daily - evidently essential if taking steroids!
40mg atorvastatin (statin to control liver function) nightly
30mg propranolol (beta blocker to control tremors) as 20mg morning & 10mg nightly

Day 1 on 11 May 09

Took four 5mg tablets with Lanzopalone 15mg at 10am today.
Out for lunch, 2 bus journeys.
Feel slightly tired but head fairly stable.
Mobility 75%
Cognitivity 65%
Daytime Fatigue 65%
Managed to keep going till about 7.30pm but by 10pm I was in bed aching all over. Difficult nights sleep, awake 4-7am then sleep again till 9.30am. Need to stagger dose.
Overnight 35%

Day 2 on 12 May 09

Took three 5mg tablets with Lanzopalone 15mg at 10am
Weight check: 15st 0.5lb
Stay indoors. A lot of muscle ache particularly hands and shoulders.
Mobility 75%
Cognitivity 70%
Daytime Fatigue 50%
Took remaining 5mg tablet with dinner at 6pm - this tactic seemed to have worked although still aching a lot at night. Took sleeper and managed to sleep night though although bit fatigued in morning.
Overnight 75%

Day 3 on 13 May 09

Took three 5mg tablets with Lanzopalone 15mg at 10am
Bus journey into town & appt at work. Still seem to have the memory problem although brain fog has lifted replaced with lots of random thoughts all vying for attention. Seem to be ok if I concentrate on one task at a time. Still muscle ache particularly hands and shoulders.
Mobility 70%
Cognitivity 75%
Daytime Fatigue 70%
Forgot to eat so took remaining 5mg tablet with toast at 8.30pm - big mistake leading to rough night with IBS flare up. No sleeper taken, bit dizzy in morning.
Overnight 40%

Day 4 on 14 May 09

Took four 5mg tablets with Lanzopalone 20mg at 11am (forgot to split dose)
Car journey to see relatives. Same as yesterday - seem to be ok if I concentrate on one task at a time. Muscle aches reduced again. In evening managed to get some admin done (first time I have been able to do that in months)
Mobility 70%
Cognitivity 75%
Daytime Fatigue 70%
Took sleeper, slept ok, bit hazy in morning.
Overnight 70%

Day 5 on 15 May 09

Took three 5mg tablets with Lanzopalone 15mg at 10am
Stayed in - same as yesterday
Mobility 75%
Cognitivity 75%
Daytime Fatigue 75%
Took remaining 5mg tablet at 6pm
Overnight 70%

Day 6 on 16 May 09

Took three 5mg tablets with Lanzopalone 15mg at 10am
Stayed in - lot of PC use so stopped by 7pm
Mobility 75%
Cognitivity 75%
Daytime Fatigue 75%
Took remaining 5mg tablet at 6pm, took sleeper at 11pm
Overnight 70%

Day 7 on 17 May 09

Took three 5mg tablets with Lanzopalone 15mg at 10am
Stayed in.
Mobility 75%
Cognitivity 75%
Daytime Fatigue 75% (ok until 6pm)
Took remaining 5mg tablet at 6pm
Took sleeper
Overnight 75%

Day 8 on 18 May 09

Took three 5mg tablets with Lanzopalone 15mg at 11am
Out for breakfast at friends so late taking tablets. Whizzed around a few shops and paid dearly for it an hour later. Afternoon short sleep.
Mobility 75%
Cognitivity 75% very variable
Daytime Fatigue 60%
Took remaining 5mg tablet at 6pm
Still awake 2am, took sleeper
Overnight 50%

Day 9 on 19 May 09

Took three 5mg tablets with Lanzopalone 15mg at 9am
Car journey to doctors and onward into town by bus. A few shops and CVS pc search for an hour until fuzzy. Fuzzy until afternoon lie-down for 15 mins (didn't sleep).
Mobility 65%
Cognitivity 60% very variable
Daytime Fatigue 60%
Took remaining 5mg tablet at 6pm
Took sleeper Overnight 65%

Days 10 to 12 on 20th to 22nd May 09

Decided on slightly different approach. Took sleeper every night and all 4 steroid tablets at 10am in the morning. Unfortunately this seems to be making me too tired and needed a 2pm nap so I will now take the fourth steroid at lunchtime from tomorrow. Eventually I will get it right!

Mobility 65%
Cognitivity 60% very variable - good to start, poor 12-2pm, good again after nap
Daytime Fatigue 60% - as above
Took sleeper Overnight 75% - now sleeping through night better

Days 13 to 15 on 23rd to 25th May 09
All pretty stable now day by day. Will only add to diary if things change now.