12/3/13

Edit form - [ Steroid Usage in MSers ] - Google Docs

116

responses

Summary See complete responses
Type of MS
C...
12/3/13

Edit form - [ Steroid Usage in MSers ] - Google Docs
No

24

21%

Not sure or I can't remember

15

13%

Other

1...
12/3/13

Edit form - [ Steroid Usage in MSers ] - Google Docs

When you have received steroids for relapses how have you r...
12/3/13

Edit form - [ Steroid Usage in MSers ] - Google Docs
Comments
My only experience with steroids was shortly after ...
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Survey results of steroid usage in MSers

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Survey results of steroid usage in MSers

  1. 1. 12/3/13 Edit form - [ Steroid Usage in MSers ] - Google Docs 116 responses Summary See complete responses Type of MS Clinically-isolated syndrome 2 84 Relapsing-remitting 2% 72% Relapsing secondary progressive 6 5% 12 10% Primary progressive 7 6% Relapsing progressive MS 4 3% Secondary progressive Have you ever been treated with high-dose steroids? Yes 103 89% No 11 9% 2 2% Not sure How many courses have you had? 1 1 5 5 5 6 4 2 2 3 or 5 4 times 1 2 1 3 3 2 8 3 N/A about ten over 40 years 3 3 One one 2 3 1 2 5 1 1 course of 1gram, 3 days iv 1 2 0 Four 1 1 1 1 5 3 1 3 two 1 2 3 2 8 (1 5-day, 1 3-day) 1 5 1 2 one about 5 5 4 One 8 ... about 10 Several 3 1 3 1 1 >10 one 2 5 6 4 How were/are the steroids given? Orally 37 35% Intravenously - pulsed over a few days 81 76% Intravenously - monthly 5 5% Other 6 6% People may select more than one checkbox, so percentages may add up to more than 100%. Were the side effects of steroids explained to you before being treated? Yes - adequately Yes - inadequately 40 34% 26 22% https://docs.google.com/a/giovannoni.net/spreadsheet/gform?key=0At8Wl-mnbSwhdC1KcGtrZTNQeDRnSTdNMnFzQzZYWFE&gridId=0#chart 1/4
  2. 2. 12/3/13 Edit form - [ Steroid Usage in MSers ] - Google Docs No 24 21% Not sure or I can't remember 15 13% Other 11 9% Have you had any of the following side effects from receiving steroids? Water retention - leg swelling, swollen or "puffy" face 45 47% Nervousness or restlessness 47 49% Insomnia - poor sleep 71 74% Mood swings 46 48% Hypomania - persistent euphoria or extreme happiness 17 18% Acute psychosis 3 3% Avascular necrosis 1 1% Thrombosus 2 2% Allergic infusion reactions 2 2% Muscle weakness 14 15% Blurred vision 17 18% Increased growth of body hair 11 11% Easy bruising 14 15% Infection 9 9% 20 21% Osteoporosis (bone thinning) 7 7% Diabetes or worsening of diabetes 4 4% High blood pressure 13 14% Stomach irritation 27 28% 0 0% Increased appetite 31 32% Weight gain 26 27% Other 19 20% Acne Cataracts or glaucoma People may select more than one checkbox, so percentages may add up to more than 100%. https://docs.google.com/a/giovannoni.net/spreadsheet/gform?key=0At8Wl-mnbSwhdC1KcGtrZTNQeDRnSTdNMnFzQzZYWFE&gridId=0#chart 2/4
  3. 3. 12/3/13 Edit form - [ Steroid Usage in MSers ] - Google Docs When you have received steroids for relapses how have you responded? Worsening 3 3% No response 15 13% Poor response 10 9% Moderate response 21 18% Good response 34 29% Excellent respons 21 18% Have you ever been treated with an oral taper of steroids? Yes - frequently 15 13% Yes - infrequently 31 27% No never 61 53% Not sure 0 0% If you have had, or are currently receiving, monthly pulsed steroids how have you responded? Not applicable - I have never had monthly pulsed steroids 79 68% Worsening 1 1% No response 3 3% Poor response 2 2% Moderate response 3 3% Good response 5 4% Excellent respons 0 0% https://docs.google.com/a/giovannoni.net/spreadsheet/gform?key=0At8Wl-mnbSwhdC1KcGtrZTNQeDRnSTdNMnFzQzZYWFE&gridId=0#chart 3/4
  4. 4. 12/3/13 Edit form - [ Steroid Usage in MSers ] - Google Docs Comments My only experience with steroids was shortly after being diagnosed with PPMS and suspect this was a rather desperate measure, as nothing else could be offered. Utterly pointless and not something I will repeat. levels. That's 5 doses in 15 years. I have good calcium The first few times I had rapid improvement and relief. The last couple of times assisted but not to the same degree as the first 3 or so times. If steroids are only really advisable for a severe relapse to help speed recovery, and you have to take them at onset for effectiveness, but you don't know at onset how bad the relapse w ... Disclaimer No personal identifiers, including your computer's IP address, will be collected as part of this survey. Please note that by completing this survey you are consenting to the data you provide being analysed by Prof. Giovannoni and his collaborators. Results of this survey will be presented on this blog and may be submitted for publication. Number of daily responses https://docs.google.com/a/giovannoni.net/spreadsheet/gform?key=0At8Wl-mnbSwhdC1KcGtrZTNQeDRnSTdNMnFzQzZYWFE&gridId=0#chart 4/4

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