long term side effects after taking pegasy/ribrivan

[beachmomma04]

I'm 44 yr old female dx with Hep C genotype 1a stage 3 by liver biopsy, did treatment for 72 weeks 3 months after treatment i relapsed.  it will be 6 months on feb 19 since my last treatment.  I still have serve muscle and joint pain, fatigue, insomnia, white blood count still low, chronic diarrhea, shortness of breath, and can't REMEMBER things (brain fog).   My doctor told me today that my illness wasn't from the treatment but from ANXIETY DISORDER, fibromyalgia,ibs and that i needed to see a psychiatry consultation.  Is there anyone that has Hep C and took treatments having long term problems? OR is it just me!!!  Please Help and let me know

[otterwatcher]

yes 5years post tx have chronic debiltating fatigue and muscle joint bone pain,neuropathy,brain fog,confusion-was fine post tx despite 20years of hepc infection-probs defo from tx-liver specialist agrees,says cheerfully at last appt-do let me know if anything else develops,you know better than us!

[JasmineT]

In response to your original question, your symptoms are also consistent with depression based on what I have heard, not the expert here so could be wrong.  Depression is absolutely a common sx on interferon tx.  I am struggling with it now.  So is anxiety which is also an issue.  I think it's a good call to see someone about getting some hep with that. Maybe ADs or similar will kick it out of your system.  Even people who have not treated need help to knock out depression so maybe this will help rebalance your body a little.  It is hope and I would pursue it to see if it helps.

[JasmineT]

Unfortunately I had a lot of the symptoms double dose lists prior to treatment, not to the degree I have the, on treatment of course.  But that is part of the reason I chose to treat.  I was hoping to eventually heal or at least stop the progression.  Many of the symptoms are symptoms of chronic hep c ( http://www.hepatitis-central.com/hcv/symptoms/hep.htm ).  

Only time will tell if I made the right decision.  Be careful out there.

[Kristina538]

I had similar and struggled through the muscle pain for months (ended up with nerve/tendon pain in one shoulder and arm), but it disappeared after about a year.    I did however, have thyroid issues, (toxic nodule) and was hyper thyroid - they were hoping it would settle down, but it didn't.  

Mine (toxic nodule) was there prior to tx but still 'normal' so I guess tx exaccerbated it.   I think everyone should have thyroid checks for a year after tx.   Lack of, or too much, thyroid hormone, can cause a multitude of symptoms...

[virt111]

This is just a testament to the fact that everyone's physiology is similar in terms of it's structure, but may as well be light years apart when it comes to introducing chemicals into the body.  This is true for treatment as well as long-term sides.  Everyone comes into the situation with different genetic makeup, family history, different stages of disease, etc.  It makes my head hurt just thinking about all of the variables.

I have not read all of the comments, so I may be repeating this, but there could be some level of coincidence with regards to certain conditions that may have occurred regardless of treatment.  Now, if they were continuous and consistent after beginning treatment throughout, then that is a different story.

Let's face it, Tx is not exactly water from the Fountain of Youth that is going into your bodies....

[DoubleDose]

And here is a brief segment copied from the Hepatitis Trust Survey on Post-tx side effects...just FYI:

Post-Treatment Symptoms/Side Effects
In the first six months after treatment 25 people (5%) reported they had experienced no post-treatment symptoms/side effects. Between six months and twelve months, this number increased to 47 (9.3%) and after twelve months 50 people (10%) reported experiencing no symptoms/side effects. This means that 90% of people reported ongoing symptoms/side effects for a period greater than 12 months after treatment ended.

This is an important finding considering the clinical information which suggests that side effects will resolve after a relatively short space of time, and the vast majority of information that is presented to patients which encourages them to contemplate treatment.

The five most frequently reported post treatment symptoms/side effects were fatigue, joint aches/pains, brain fog, depression and mood swings.

Issues of fatigue, joint aches and pains, mood swings and brain fog all reduced by nearly 50% twelve months after treatment. However, significant numbers of patients still reported a range of ongoing symptoms/side effects.

As previously mentioned, there has been insufficient research into the longer term impacts of hepatitis C treatment, be they physical or psychological. Our findings do however concur with recent research which looked at side effects and symptoms experienced by a small number of people who had undergone treatment for HCV.2 This found that 25 out of 27 research participants reported persistent physical and psychological symptoms/side effects (11 participants reporting side effects/symptoms for up to 12 months after treatment and 14 reporting ongoing symptoms/side effects for more than 12 months)

Table 9) Symptoms/Side effects

Symptom/Side effect
First Six Months
Six to Twelve Months
Twelve Months After Treatment


#
%
#
%
#
%

None
25
5%
47
9%
50
10%

Fatigue (lack of energy, sleepiness, feeling run down)
367
72%
289
57%
195
38%

Joint/muscle aches
323
64%
254
50%
182
36%

Brain fog (confusion, memory loss, sudden blankness)
309
61%
237
47%
180
35%

Depression/anxiety
287
56%
228
45%
165
32%

Mood swings
246
48%
180
35%
120
23%

Un-refreshing sleep
217
43%
169
33%
131
26%

Insomnia
207
41%
140
27%
95
18%

Skin problems
201
39%
130
25%
96
19%

Flu like symptoms ( headache, chills, fever)
193
38%
110
21%
73
14%

Digestive problems
190
37%
141
28%
110
21%

Hair loss
173
34%
44
8%
20
3%

Breathlessness
166
32%
100
19%
68
13%

Sight problems
164
32%
128
25%
91
18%

Night sweats
146
28%
99
19%
66
13%

Liver pain/discomfort
141
28%
107
21%
79
15%

Sleeping a lot
139
27%
114
22%
74
14%

Lack of hair growth
100
19%
55
10%
23
4%

Neuropathy/Nervous system problems
17
3%
10
2%
6
1%

Skin problems
13
2.6%
-
-
-
-

Sexual issues
4
0.8%
7
1%
4
0.8%

Hair other
4
0.8%
-
-
-
-

Hearing problems
3
0.6%
2
0.4%
2
0.4%

Blood disorders
3
0.6%
-
-
-
-

Other psychiatric llness
2
0.4%
4
0.8%
3
0.6%

Cognitive problems
2
0.4%
-
-
-
-

Gastrointestinal conditions
1
0.2%
-
-
-
-

Autoimmune disorders
1
0.2%
-
-
-
-

Lung/breathing disorders
1
0.2%
-
-
-
-

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%
-
-