Introduction
- Are post-treatment problems widespread or are we only hearing from those that experience them?
- What are the common ones?
- How long do they last?
Between April 2006 and September 2007 just over 500 respondents completed the survey. All of these respondents were more than 6 months “post treatment”.
TABLE 1 - Respondents by Gender and Age Bracket
|
Age
|
Female
|
Male
|
No response
|
Grand Total
|
|
|
18 - 30
|
13
|
4
|
|
17
|
3.4%
|
|
31 - 40
|
30
|
20
|
|
50
|
10%
|
|
41 - 50
|
134
|
89
|
|
223
|
44.6%
|
|
51 - 60
|
87
|
107
|
|
194
|
38.8%
|
|
61 - 70
|
6
|
6
|
|
12
|
2.4%
|
|
over 70
|
1
|
|
|
1
|
.2%
|
|
No response
|
|
|
3
|
3
|
.6%
|
|
Grand Total
|
271
|
226
|
3
|
500
|
|
|
54.2%
|
45.2%
|
.6%
|
|
100.0%
|
TABLE 2 - Respondents by Age and Genotype
|
geno |
|
|
|
|
|
|
|
|
|
1 |
2 |
3 |
4 |
5 |
6 |
|
Total |
|
| 18-30 |
9 |
3 |
4 |
|
|
|
1 |
17 |
|
| 31-40 |
29 |
3 |
9 |
1 |
|
|
8 |
50 |
|
| 41-50 |
106 |
37 |
50 |
9 |
|
1 |
21 |
224 |
|
| 51-60 |
118 |
26 |
34 |
1 |
1 |
|
14 |
194 |
|
| 61-70 |
9 |
1 |
|
1 |
|
|
1 |
12 |
|
| over 70 |
|
|
|
1 |
|
|
|
1 |
|
| blank |
1 |
|
1 |
|
|
|
|
2 |
|
| TOTAL |
272 |
70 |
98 |
13 |
1 |
1 |
45 |
500 |
|
|
54.4% |
14%
|
19.6%
|
2.6%
|
.2%
|
.2%
|
9%
|
100% |
|
Table 3 shows Outcomes of SVR by genotypes. The percentage of successful outcome reflects approximately the same outcomes quoted in recent medical research.
TABLE 3 - SVR Outcomes by Genotype
|
SVR
|
Genotype 1
|
2
|
3
|
4
|
5
|
6
|
Don't know
|
Total
|
|
Yes
|
164
|
60.3%
|
58
|
82.9%
|
59
|
60.2%
|
7
|
53.8%
|
|
|
1
|
(100%)
|
34
|
(75.5%)
|
323
|
|
No
|
86
|
31.6%
|
7
|
10%
|
25
|
25.5%
|
4
|
30.7%
|
1
|
100%
|
|
|
11
|
(24.5%)
|
134
|
|
Waiting for result
|
19
|
6.9%
|
5
|
7.1%
|
14
|
14.3%
|
2
|
15.5%
|
|
|
|
|
|
|
40
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
(blank)
|
3
|
(1.2%)
|
|
|
|
|
|
|
|
|
|
|
|
|
3
|
|
Total
|
272
|
|
70
|
|
98
|
|
13
|
|
1
|
|
1
|
|
45
|
|
500
|
Symptoms Before Treatment
Of the symptoms we asked about before treatment, the most commonly reported issues were:
Fatigue (e.g. lack of energy, sleepiness, feeling run down) 77.5%,
Joint and muscle aches or problems 53.2%
Depression/anxiety 48.2%
Brain fog (e.g. confusion, memory loss, sudden blankness) 42.9%
Digestive problems/nausea 42.5%
Mood swings 41.3%
Problems associated with sleep, skin, sight and liver discomfort were the next commonly reported:
Un-refreshing sleep 39.9%
Night sweats 34.5%
Liver pain/discomfort 33.3%
Skin problems (e.g. itching, rashes, dermatitis, lichen planus) 31.5%
Flu like symptoms (e.g. headache, chills, fever) 29.6%
Sleeping a lot 27.5%
Sight problems 25.4%
A small percentage (4%) also reported various conditions of the nervous system, and constant infections (mouth, sinus, urinary)..2% reported feeling hot and/or cold constantly and .2% said they had hair loss.
Only 65 or 12.8% of our respondents reporting having no symptoms before treatment.
TABLE 4- Symptoms Before Treatment
|
504 respondents were asked to tick any that apply
|
|
|
|
None
|
65
|
12.8
|
|
Fatigue (e.g. lack of energy, sleepiness, feeling run down)
|
391
|
77.5
|
|
Flu like symptoms (e.g. headache, chills, fever)
|
149
|
29.6
|
|
Joint/muscle aches
|
268
|
53.2
|
|
Digestive problems/nausea
|
214
|
42.5
|
|
Liver pain/discomfort
|
168
|
33.3
|
|
Depression/anxiety
|
243
|
48.2
|
|
Brain fog (e.g. confusion, memory loss, sudden blankness)
|
216
|
42.9
|
|
Mood swings
|
208
|
41.3
|
|
Skin problems (e.g. itching, rashes, dermatitis, lichen planus)
|
159
|
31.5
|
|
Insomnia
|
138
|
27.4
|
|
Un-refreshing sleep
|
201
|
39.9
|
|
Sleeping a lot
|
139
|
27.5
|
|
Sight problems
|
128
|
25.4
|
|
Night sweats
|
174
|
34.5
|
|
Other, Please Specify
|
|
|
|
(individual conditions grouped as follows)
|
|
|
|
Conditions of the nervous system
|
4
|
0.8
|
|
Hot/cold constantly
|
2
|
0.4
|
|
Hair Loss
|
2
|
0.4
|
|
Infections (mouth, sinus, urinary)
|
4
|
0.8
|
Medical Conditions Before Treatment
We also asked what medical conditions people had before they started treatment.We were interested in what diagnosed illnesses our respondents had.
About 5% had Hepatitis B, and .6% had Hepatitis A
Almost 4% had rheumatoid or other forms of arthritis
3.4% had diabetes
4.3% had thyroid problems
Although considerably higher numbers of people reported experiencing symptoms of depression and digestive problems, only 1% had been diagnosed with Depression and 1% diagnosed with gastrointestinal conditions.
TABLE 5 - Medical Conditions Before Treatment
|
Medical Conditions Before Treatment
|
number |
% |
|
HIV/Aids
|
7
|
1.4
|
|
Hepatitis B
|
25
|
4.9
|
|
Rheumatoid Arthritis
|
19
|
3.8
|
|
Colitis
|
8
|
1.6
|
|
Diabetes
|
17
|
3.4
|
|
Hypo-Thyroidism
|
15
|
2.9
|
|
Hyper-Thyroidism
|
7
|
1.4
|
|
Other, Please Specify
|
|
|
|
(individual conditions grouped as follows)
|
|
|
|
Hepatitis A
|
3
|
0.6
|
|
Fibromyalgia
|
4
|
0.8
|
|
Depression
|
5
|
1
|
|
Alcoholism/Cirrhosis
|
3
|
0.6
|
|
High Blood Pressure
|
7
|
1.4
|
|
Neuropathy
|
3
|
0.6
|
|
Cancers
|
4
|
0.8
|
|
Gastrointestinal conditions
|
5
|
1
|
|
Haemophilia
|
3
|
0.6
|
|
Other Blood Disorders
|
3
|
0.6
|
3 people, or .6%, reported being diagnosed with cirrhosis or alcoholism in this question.However in another question directly about cirrhosis, 90 people or 18% reported affirmatively.
Medical Conditions During Treatment
The survey asked whether people had any medical conditions diagnosed whilst on treatment or within 6 months of the end of treatment that have become chronic? (i.e. that lasted more than 6 months).
The most frequently reported chronic condition were those associated with sight problems (21%) followed by arthritic illnesses (14%) and thyroidism (7%).
High blood pressure (8%) gallbladder disease (4%) depression (4%) and diabetes (3%) were the next most frequently reported conditions to develop during treatment.
In a section allowing reports of other conditions, many issues listed appeared to be symptoms rather than diagnosed chronic condition.This creates a somewhat unclear picture of medical illnesses arising during treatment.
TABLE 6 – Medical Conditions During Treatment
|
respondents
|
|
|
Diabetes
|
15
|
3
|
|
Pancreatitis
|
5
|
1
|
|
Hypo-Thyroidism
|
44
|
8.7
|
|
Hyper-Thyroidism
|
13
|
2.6
|
|
Gallbladder disease (e.g. gall stones)
|
22
|
4.4
|
|
High Blood Pressure
|
41
|
8.1
|
|
Arthritis
|
69
|
13.7
|
|
Eye problems
|
107
|
21.2
|
|
Colitis
|
10
|
2
|
|
Other, Please Specify
|
|
|
|
(individual conditions grouped as follows)
|
|
|
|
Fibromyalgia
|
9
|
1.8
|
|
Depression/Anxiety
|
20
|
4
|
|
Other Psychiatric Illness
|
7
|
1.4
|
|
Blood disorders
|
16
|
3.2
|
|
Neuropathy/Nervous system
|
3
|
0.6
|
|
Cancers
|
2
|
0.4
|
|
Gastrointestinal conditions
|
4
|
0.8
|
|
Autoimmune disorders
|
4
|
0.4
|
|
Hearing Problems
|
4
|
0.8
|
|
Skin problems
|
13
|
2.6
|
|
Lung/breathing disorders
|
14
|
2.8
|
|
Memory Loss
|
3
|
0.6
|
|
Fatigue
|
14
|
2.8
|
|
Insomnia
|
5
|
1
|
|
Hair problems
|
3
|
0.6
|
|
Sinus problems
|
2
|
0.4
|
|
Teeth/gum problems
|
3
|
0.6
|
|
Severe/chronic Pain (unspecified)
|
5
|
1
|
Cirrhosis
Of our respondents, 18% (90 people) reported they had cirrhosis before starting treatment.Of this group 62% achieved SVR, 32% did not, 5% were still waiting for their results and 2% did not respond.
TABLE x – Cirrhosis & SVR Outcomes
|
SVR
|
Cirrhosis
|
|
|
No Cirrhosis
|
Total
|
|
No
|
28
|
31.1%
|
|
104
|
132
|
|
Yes
|
55
|
61.1%
|
|
268
|
323
|
|
Waiting for result
|
5
|
5.5%
|
|
35
|
40
|
|
(blank)
|
2
|
2.3%
|
|
|
2
|
|
Total
|
90
|
|
|
407
|
497
|
|
18.1
|
|
|
81.9
|
|
Of those with Cirrhosis, 9 reported having no symptoms before treatment,
Post Treatment Symptoms
In the first six months after treatment 25 people (5%) reported they experienced no symptoms after treatment. Between six months and a year, this number increased to 47 (9.3%) and after a year 50 people (9.9%) reported experiencing no symptoms.
Many people will be surprised that these numbers are so low.After all, the pharmaceutical company literature talks about the medicine and its effects clearing out of the body in a relatively short period of time.
The five most frequently reported post treatment symptoms are
At Six Months Six Mths to Year After a Year
Fatigue 73% 57% 39%
Joint Aches/Pains 64 50 36
Brain Fog 61 47 36
Depression 5745 33
Mood Swings 49 36 24
Fatigue reduced as an issue by almost a half a year after treatment. Likewise the number of people reporting issues with joint aches & pains (including arthritis and arthritic symptoms) also reduced to almost half the number after a year.So too did the number of reports about mood swings and brain fog became less of an issue.Depression, however, did not reduce to quite the same extent.
TABLE 7 – Post Treatment Symptoms
|
Symptom
|
First Six Months
|
|
Six Month to Year
|
|
Year After
Treatment
|
|
None
|
25
|
5
|
|
47
|
9.3
|
|
50
|
9.9
|
|
Fatigue (e.g. lack of energy, sleepiness, feeling run down)
|
367
|
72.8
|
|
289
|
57.3
|
|
195
|
38.7
|
|
Flu like symptoms (e.g. headache, chills, fever)
|
193
|
38.3
|
|
110
|
21.8
|
|
73
|
14.5
|
|
Joint/muscle aches
|
323
|
64.1
|
|
254
|
50.3
|
|
182
|
36.1
|
|
Digestive problems
|
190
|
37.7
|
|
141
|
28
|
|
110
|
21.8
|
|
Liver pain/discomfort
|
141
|
28
|
|
107
|
21.2
|
|
79
|
15.7
|
|
Depression/anxiety
|
287
|
56.9
|
|
228
|
45.2
|
|
165
|
32.7
|
|
Brain fog (e.g. confusion, memory loss, sudden blankness)
|
309
|
61.3
|
|
237
|
47
|
|
180
|
35.7
|
|
Mood swings
|
246
|
48.8
|
|
180
|
35.8
|
|
120
|
23.8
|
|
Skin problems
|
201
|
39.9
|
|
130
|
25.8
|
|
96
|
19
|
|
Insomnia
|
207
|
41.1
|
|
140
|
27.8
|
|
95
|
18.8
|
|
Un-refreshing sleep
|
217
|
43.1
|
|
169
|
33.5
|
|
131
|
26
|
|
Sleeping a lot
|
139
|
27.6
|
|
114
|
22.6
|
|
74
|
14.7
|
|
Sight problems
|
164
|
32.5
|
|
128
|
25.4
|
|
91
|
18
|
|
Night sweats
|
146
|
28.9
|
|
99
|
19.6
|
|
66
|
13.1
|
|
Breathlessness
|
166
|
32.9
|
|
100
|
19.8
|
|
68
|
13.5
|
|
Hair loss
|
173
|
34.3
|
|
44
|
8.7
|
|
20
|
3.9
|
|
Lack of hair growth
|
100
|
19.8
|
|
55
|
10.9
|
|
23
|
4.6
|
|
Other, Please Specify
|
|
|
|
|
|
|
|
|
|
(individual conditions grouped as follows)
|
|
|
|
|
|
|
|
|
|
Sexual issues
|
4
|
0.8
|
|
7
|
1.4
|
|
4
|
0.8
|
|
Neuropathy/Nervous system
|
17
|
3.4
|
|
10
|
1.9
|
|
6
|
1.2
|
|
Hearing Problems
|
3
|
0.6
|
|
2
|
0.4
|
|
2
|
0.4
|
|
Other Psychiatric Illness
|
2
|
0.4
|
|
4
|
0.8
|
|
3
|
0.6
|
|
Gastrointestinal conditions
|
1
|
0.2
|
|
|
|
|
|
|
|
Autoimmune disorders
|
1
|
0.2
|
|
|
|
|
|
|
|
Blood disorders
|
3
|
0.6
|
|
|
|
|
|
|
|
Skin problems
|
13
|
2.6
|
|
|
|
|
|
|
|
Lung/breathing disorders
|
1
|
0.2
|
|
|
|
|
|
|
|
Cognitive problems
|
2
|
0.4
|
|
|
|
|
|
|
|
Hair other
|
4
|
0.8
|
|
|
|
|
|
|
|
Headaches, sinus
|
|
|
|
5
|
1
|
|
3
|
0.6
|
|
Fibromyalgia
|
|
|
|
1
|
0.2
|
|
1
|
0.2
|
|
Blood disorders
|
|
|
|
2
|
0.4
|
|
|
|
|
Autoimmune issues
|
|
|
|
1
|
0.2
|
|
|
|
|
Heart problems
|
|
|
|
1
|
0.2
|
|
|
|
Food Drink and Exercise
When we asked about diet – did people eat plenty of fruit and vegetables, etc, 81% of our respondents replied that they did.
51% said they took regular exercise at least three times a week
70% said they drank one and a half litres of water a day
71% said they now get enough rest.
TABLE 8 – Diet Exercise Water and Rest
|
Of 504 respondents
|
Total
|
|
|
Have a good diet
|
408
|
81
|
|
Take regular exercise (at least three times a week)
|
256
|
50.8
|
|
Drink plenty of water ()
|
349
|
69.2
|
|
Take enough rest
|
358
|
71.0
|
Asked about alcohol intake following treatment, 23 respondents (4.6%) left this area blank on the survey.Of the remaining respondents, 61% said they stopped drinking alcohol completely and one quarter (24.2%) said they drink less than 2 units of alcohol per day on average.21 (4.1%) acknowledge they drink more than 2 units of alcohol per day.
Some people’s intake of alcohol became so “occasional” that we categorised this into several subgroups:
4 people (.8%) said they had one drink a week
14 (2.8%) 2 or 3 drinks a month
10 (2%) had 2 or 3 drinks very rarely.
4 (.8%) people said they had one drink a year
2 (.4%) acknowledged binge-drinking occasionally
TABLE 9 – Alcohol Intake
|
Of 504 respondents
|
Total
|
|
|
Drink no alcohol
|
304
|
60.3
|
|
Drink less than 2 units per day
|
122
|
24.2
|
|
Drink more than 2 units per day
|
21
|
4.1
|
|
Other, Please Specify
(individual conditions grouped as follows)
|
|
|
|
“Occasional drink”:
|
|
|
|
One unit per week
|
4
|
.8
|
|
2 or 3 units per month
|
14
|
2.8
|
|
2 or 3 units rarely
|
10
|
2
|
|
“One unit a year”:
|
4
|
.8
|
|
“Occasional bingeing":
|
2
|
.4
|
|
Blank
|
23
|
4.6
|
|
|
|
And After Treatment – Did You Feel Better?
152 (or 30.1%) of our respondents said they felt consistently better after their treatment.However, 196 (38.9%) said they felt consistently worse and 140 (27.8%) said they felt no different.(16 people, or 3.2%, did not reply to this question)
TABLE 10 – Did You Feel Better
|
Of 504 respondents
|
Total
|
|
|
CONSISTENTLY BETTER than before treatment
|
152
|
30.1
|
|
CONSISTENTLY WORSE than before treatment?
|
196
|
38.9
|
|
NO DIFFERENT
|
140
|
27.8
|
|
Blank
|
16
|
3.2
|
|
|
|
We looked more closely at this response, breaking the responses into those who had achieved PCR and those who hadn’t.
Of the 326 who achieved PCR
48% said they felt consistently better
35% said they felt consistently worse
And 26% said they felt no different after treatment than before
TABLE 11 – PCR Yes Outcome
|
Of 326 respondents – PCR yes
|
Total
|
|
|
CONSISTENTLY BETTER than before treatment
|
155
|
47.5
|
|
CONSISTENTLY WORSE than before treatment?
|
113
|
34.6
|
|
NO DIFFERENT
|
85
|
26.0
|
|
Blank
|
13
|
3.9
|
|
|
|
Of the 135 who did NOT achieve SVR
18% said they felt consistently better
50% said they felt consistently worse
32% said they felt no different
TABLE 12 - PCR No Outcome
|
Of 135 respondents – PCR no
|
Total
|
|
|
CONSISTENTLY BETTER than before treatment
|
24
|
17.7
|
|
CONSISTENTLY WORSE than before treatment?
|
67
|
49.6
|
|
NO DIFFERENT
|
43
|
31.9
|
|
Blank
|
1
|
.8
|
|
|
|
Of the 40 people still awaiting their PCR outcome
28% said they felt consistently better
40% said they felt consistently worse
28% said they felt no different
2% did not reply
TABLE 13 – Still Awaiting Outcome of PCR
|
Of 40 respondents – waiting for results
|
Total
|
|
|
CONSISTENTLY BETTER than before treatment
|
11
|
27.5
|
|
CONSISTENTLY WORSE than before treatment?
|
16
|
40.0
|
|
NO DIFFERENT
|
11
|
27.5
|
|
Blank
|
2
|
5.0
|
TABLE 14 – How Long Before Feeling Better
|
Of 152 respondents
|
Total
|
|
|
felt better within the first six months
|
59
|
38.9
|
|
felt better after 6 months
|
44
|
28.9
|
|
felt better after I year
|
27
|
17.8
|
|
felt better after 18 months
|
7
|
4.6
|
|
felt better after 2 years
|
11
|
7.2
|
|
did not respond to this question
|
4
|
2.6
|
