About Me: Female, Chilliwack, BC, member since Apr 2013
I'm 48 years old and I have Hep C, genotype 1A. I just found out in 2011, and I know I've had it since about 1981 when I used needles briefly for 6 months. I have lived symptom free for over 30 years and it was a routine blood test that found my liver enzymes were high
[More]er than normal. A biopsy put my liver at grade 2 and stage 2. I am blessed to be a rapid responder (virus free) at 4 weeks, and I had only 288,000 viral count when I began treatment.
I am 26 weeks into a 48 week treatment on Interferon/Ribavirin. I would have been done at 26 weeks but my body rejected Victrelis (Boceprevir) after 30 days. I ended up in the hospital for 3 days and was taken off Boceprevir. I awoke after having brain seizures with a new perspective on my life. I quit smoking, and have found an awareness in myself and in the world around me, to put it mildly. I am enjoying this time off work to take care of myself and heal physically, emotionally and spiritually.
My tx was stopped in week 45/48 on Nov 25th. I did complete 94% of the Inter-Riba combination.
I spent 14 days in the hospital from Nov.28 to Dec.12, 2013 and was diagnosed with myositis and interstitial lung disease caused from the hepc drugs called interferon and ribavirin. Treatment was stopped at 45/48 weeks and I completed 94% of tx.
Myositis is an inflammation of the skeletal muscles causing muscle damage, hence the elevated CK enzymes. It is mostly in my upper legs, hips, shoulder, arm and neck regions. It makes it difficult to support my head, lift my arms, to walk & climb stairs, and I am unable to stand from a squat position on my own.
The CK muscle enzyme test results since late November were 1495, 1200, 800 & now 1575 (should be <140). The docs say the numbers will drop but they are not. I was taken off the drugs Nov 25.
Interstitial Lung Disease (ILD) was caused by both the drugs and Myositis. ILD inflames or scars the lungs making it hard to get enough oxygen. Specifically it thickens the structure that encases the lungs. This is why I have shortness of breath. I was unable to walk without oxygen, and now I am recovering quite well. I only need oxygen if I exert any energy.
The good news is my heart is perfectly normal and the fluid around my heart will go away. I have been taken off the blood pressure pills. Also, my white & red blood cells, platelets are almost normal.
One last word: If I had not asked them to test my CK muscle enzymes they would only have found the lung disease. I kept complaining about the pain in my body. It was so bad I could not brush my teeth or lift my arms for days! No one listened to me until they did that test. I had googled elevated CK and found my symptoms matched only one reason, polymyositis. The doctor asked me if I was a medical student! I laughed and said no, just very inquisitive so I can ask the right questions. One thing I learned is to ask questions, and question everything.
My ALT/AST levels are elevated at 96/92 respectively.
I get my EOT HCV PCR test results next Friday. I've been UND since week 4 & I've never been so nervous as I am now.
"interestingly I was just tested for food sensitivities and I am now highly sensitive to gluten, dairy, beef, pork and lamb. I don't know what 'minor issues' you had but my doctor seems to think that my immune system took a hit while on t..."
"that is exactly what I am experiencing. The good days last longer but then once a week now I am completely exhausted. After 3 days of working, and that's just sitting in front of a computer, I'm exhausted. I sleep 10-12 hours on the wee..."
I am thrilled that you wrote me. I have faith in God, who in turn will give me the faith and strength I need to get through what I have to. After losing my daughter last year, I try to be grateful for everything in my life. I guess when I think about it, everything I am feeling is bound to help me in the end. I also think about Hector and again I am very grateful. thank you for your words of encouragment and if you need me, I am here, well when I can be. God bless you Blue
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