Reported purpose & perceived effectiveness
Purpose Patients Evaluations Perceived Effectiveness
Multiple Sclerosis 25 19
Relapse MS (exacerbation) 20 11
Multiple Myeloma 16 11
Astrocytoma 6 1
Nausea 5 1
Systemic Lupus Erythematosus 5 3

Show all 72 reasons taken


  • Major
  • Moderate
  • Slight
  • None
  • Can't tell

Side effects

Side effects as an overall problem

Side effects as an overall problem
Severity Evaluations
Severe 13
Moderate 35
Mild 17
None 25

Commonly reported side effects and conditions associated with Dexamethasone

Side effect Patients
Insomnia 4
Anxious mood 3
Edema (fluid retention) 3
Elevated blood sugar (hyperglycemia) 3
Increased appetite 3
Insomnia 3

Show all 83 reported side effects

Dosages

Based on patients currently taking Dexamethasone

Dosage Patients
4 mg weekly 2
20 mg weekly 2
4 mg daily 2
1.5 mg m,w,f 1
40 mg monthly 1
44 mg monthly 1
1 other twice daily 1
40 mg weekly 1
4 mg twice daily 1
4 mg four times daily 1

See all 12 dosages

Why patients stopped taking Dexamethasone

Multiple reasons could be selected

Reason Patients
Course of treatment ended 51
Doctor's advice 18
Other 13
Side effects too severe 10
Did not seem to work 5
Personal research 1
See all 85 patients who’ve stopped taking Dexamethasone

Duration

Currently taking Dexamethasone

Duration Patients
1 - 6 months 2
6 months - 1 year 3
1 - 2 years 4
2 - 5 years 4
5 - 10 years 1
10 years or more 1

Stopped taking Dexamethasone

Duration Patients
Less than 1 month 38
1 - 6 months 27
6 months - 1 year 10
1 - 2 years 7
2 - 5 years 1
5 - 10 years 2
10 years or more 1
Adherence
Adherence Evaluations
Always 82
Usually 2
Sometimes 3
Never taken as prescribed 3
Burden
Burden Evaluations
Very hard to take 7
Somewhat hard to take 11
A little hard to take 10
Not at all hard to take 62
Cost per month
Cost per month Evaluations
$200+ 0
$100-199 1
$50-99 2
$25-49 10
< $25 33
Not specified 44

What people switch to and from

Patients started taking Dexamethasone after stopping:

Treatment Patients
Methylprednisolone (Solu-Medrol Infusion) 1
Naltrexone (Low Dose Naltrexone (LDN)) 1
Prednisone (Deltasone) 1
Temazepam (Restoril) 1

Patients stopped taking Dexamethasone and switched to:

Treatment Patients
Naltrexone (Low Dose Naltrexone (LDN)) 1
Prednisolone (Panafcortelone) 1
Prednisone (Deltasone) 1
Last updated:

9 patient evaluations for Dexamethasone

59 members have decided to share their profiles only with other members of PatientsLikeMe.

Fluff4brains
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Fluff4brains
Data Quality: 0 stars
  • Gender: M
  • Age: 50
Condition: Glioblastoma 6 additional condition(s)
Quality of life:
  • Mental: Mild
  • Physical: Moderate
I am: b
I have:
Glioblastoma

See Fluff4brains's full Dexamethasone history

Apr 3, 2015 (Started Oct 20, 2014)

  • Effectiveness
    Can’t tell (for Numbness in hands)
  • Effectiveness
    Moderate (for Numbness in left arm)
  • Effectiveness
    Major (for Glioblastoma)
  • Effectiveness
    Major (for Brain Tumor)
  • Side effects
    Moderate (Increased urinary frequency, Thirst, Muscle cramps, Elevated blood sugar (hyperglycemia))
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 2 mg Daily
Advice & Tips: dex is a very powerful drug. i'm glad its there when you need it, but you'r really thinking for your exit strategy. Dex buys you a little time and pseudo normality when you tumor acts up during radio or chemo, you feel a lot better and perk up no end, but its so tempting to overdo it. As well as the blood glucose rollercoaster, you have the hunger pangs, the puffy face, muscle wastage, sleeplessness, and then there the stuff you don't necessarily see or feel - lowered resistance to colds and similar germs - TBH its as if i've like had a minor cold in the background. not good i you mid-way through chmo- LOL! IN the last month I went from to 4 mg up o 12mg of dex due to a nasty bump on the head, and it really helped speed my recovery, but stay too long in that dex comfortzone stores up issues. the 'weaning off' process can require willpower - you're basically going to get your symptoms back, but hopefully it'all make you rest and heal. dose changes ('titration') take three days to settle, and must be done gradually.especially at the lower end.

Dec 15, 2014 (Started Oct 20, 2014)

  • Effectiveness
    Major (for Brain Tumor)
  • Effectiveness
    Major (for Glioblastoma)
  • Side effects
    Moderate (Increased urinary frequency, Thirst, Muscle cramps, Elevated blood sugar (hyperglycemia))
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Advice & Tips: Okay - update since lowering the dose to 0.5mg per day. Gone too far. Just had a (for me) big seizure - facial spasms, loss of speech, quite stressful in a Starbucks. Managed to contact GP doctor who agreed it was time to up to 1.0 mg per day, and even to 2mg if I could feel 'echoes' of the seizures (I have). Very disappointed in one way (I thought I was doing so well) but grateful that this blasted drug is actually doing something useful after all. UPDATE: 18th December, back to 2mg per day after two seizures at 1mg. It's still allowing some seizure 'echoes' through and so we're increasing the Keppra/levetiracetam up to 750mg twice a day as I really don't want to go beyond 2mg and would hope we can go back down to 0.5mg sooner rather than later.

Dec 12, 2014 (Started Oct 20, 2014)

  • Effectiveness
    Major (for Brain Tumor)
  • Side effects
    Moderate (Increased urinary frequency, Thirst, Muscle cramps, Elevated blood sugar (hyperglycemia))
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Advice & Tips: Ho-ho! What a difference it makes to have some perspective. As of December 11, I've got down to 0.5mg per day, but two things are apparent: 1) all the 'diabetic' symptoms I've been getting - excessive thirst, frequent urgent need to urinate, bouts of tiredness, runny nose, sensitive skin, etc, are all down to the Dexamethazone. If I stopped taking it, doc says I wouldn't be diabetic. Yay. But 2) I'm now getting headaches and faint echoes of what could be my 'simple focal seizures', and some of the side effects of long term corticosteroid use are beginning to show. Skin's getting a bit thin and rough, muscle tone is fading, thirst still high, and I'm using metformin to help with a squeaky liver that is making too much glucose that pushes BG up when I don't eat.

Nov 15, 2014 (Started Oct 20, 2014)

  • Effectiveness
    Can’t tell (for Brain Tumor)
  • Side effects
    Moderate (Increased urinary frequency, Thirst, Elevated blood sugar (hyperglycemia))
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 10 mg Daily
Advice & Tips: Blood sugar levels went up and down like a yo-yo (not that I could tell). 5.4 to 18 and back again. Slightly elevated levels on average (7-9 mmol). Other than that, experienced no side effects - warned of increased appetite, weight gain, mood swings, aggression, reduced urine flow, but nope. If anything, it may be topping up my energy levels. Happily walked 2-3 miles a day in hospital, still doing that now. But this may just be my little coping strategy rather than the drug. Currently having the dosage decreased very slowly. started with 6x 2mg per day, now taking one less pill every third day until its done. I have been told that they may reintroduce it when other treatment starts, but - pffft. No worries. Oh yes, I have to carry a 'Steroid' card on my person 'just in case'. This notes my current dosage levels just in case I'm injured in an accident, as apparently suddenly stopping a Steroid course isn't very good for you.

  • 0 helpful marks
chasmengr
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chasmengr
Sex: M
Data Quality: 2 stars
Sensation: Moderate
Overall: Moderate
Cognition: moderate
Vision: mild
Speech: moderate
Swallowing: moderate
Upper limb: moderate
Walking: moderate
I am: n
I have:
MS

See chasmengr's full Dexamethasone history

Oct 6, 2014 (Started Aug 10, 2014)

  • Effectiveness
    Can’t tell (for Nausea)
  • Effectiveness
    None (for Prostate Cancer)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 24 mg Weekly

  • 0 helpful marks
jmhnm
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jmhnm
Sex: F
Data Quality: 2 stars
Sensation: None
Overall: None
Cognition: none
Vision: mild
Speech: none
Swallowing: none
Upper limb: moderate
Walking: moderate
I am: g
I have:
MS

See jmhnm's full Dexamethasone history

Aug 8, 2014 (Started Sep 03, 2012)

  • Effectiveness
    Moderate (for Multiple Sclerosis)
  • Side effects
    Moderate (Bloating, Skin thinning, Overactive bladder)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 40 mg Weekly
Advice & Tips: Not for long term use.

Sep 9, 2013 (Started Sep 03, 2012)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • Side effects
    Moderate (Bloating, Skin thinning, Overactive bladder)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 160 mg Monthly

  • 0 helpful marks
Last updated:
Showing 3 of 9 patient evaluations for Dexamethasone