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The Prize: SVR (plus side effect note)
I can now officially count myself among those who have attained SVR. My 25 weeks post EOT HCV PCR is UNDETECTABLE. Finally, 37 or so years after contracting the virus, 20 months after being diagnosed with the virus, 48 weeks of triple medication treatment, and 25 weeks of waiting post treatment to be tested, I am free of the virus. I thank everyone on this forum for their valuable information, insight, support, and humor, without which, it would have been much more difficult to complete treatment successfully.
For those who have attained SVR and stayed on the forum to help the rest of us, Thank You! For those who underwent treatment with me, offering advice and support, Thank You! For those for whom treatment did not work, hang in there, new treatments are on the way.
For those still in treatment, hang in there and fight tooth and nail to stay on treatment and attain SVR. When you get to the end of your rope, tie a knot and hang on. SVR is attainable. The big payoff for going through the ordeal of treatment is SVR and a Hep C free life. Yes, it is well worth it.
Just to recap my stats: Genotype 1; infected about 37 years ago; diagnosed July 2011; started Tx Sept. 2011; ended treatment Aug. 2012. Starting VL 14.4 million; Week 4 VL DET; Weeks 8, 12, 16, 20, 24, 28, 32, 36, 48 VL all UND; 12 weeks post EOT VL UND. 25 weeks posts EOT VL UND. No dose reductions. 48 wks of treatment.
(Pretreatment, I did have several extrahepatic manifestations: Systemic Vasculitis with Pericarditis, Pleuritis, & Hemolytic Anemia; Severe Fatigue; Gradually Increasing Blood Glucose; Unexplained Weight Gain; Sudden Onset Unexplained Allergies and Asthma; Dry Eyes; Dry Skin; Peripheral Neuropathy)
Worst Treatment Side Effects: Rash & Itching, Nausea & Bloating & Vomiting, Rectal/Anal issues (crapping shards of glass). These were the worst side effects I had in terms of misery and potential game changers. However, these side effects were compounded by the fact that my treatment team had no clue how to assess and appropriately treat the side effects. I had to demand treatment and they gave it reluctantly after several weeks of having the problems. I firmly believe if my treating team had been competent and had treated the side effects early on, I would have had a much easier treatment.
Other Side Effects. I am listing the other side effects I had so that people can see the wide range of side effects possible with these drugs. Some side effects stayed for the entire treatment and others waxed and waned. Some lasted only a day whereas others moved in for the duration. Some were severe and others were a nuisance. I have decided that these drugs can and do cause just about every possible side effect imaginable. There are many other side effects and I am listing only the side effects I had. If listing these side effects can help anyone know that they are not alone dealing with weird side effects, then it is worth it to list them. And none of us should have to put up with the docs telling us the drugs don’t cause the side effects we have.
Cardiovascular: Premature heart beats; Frequent episodes of rapid heart rate (tachycardia 180 beats per min); swollen ankles and feet
Dermatological: Rash ….. red skin, hives, wheals, confluent hives, macules, papules, pinpoint lesions, flat red-purple lesions, bright red lesions, dry scaling lesions, skin cracks/fissures (palms, fingers, knuckles), eczematous lesions, psoriasis type lesions; Itching continuous/widespread; Hair Loss – mild -mod.; Mouth and Nose Sores; also some weeping of the rash areas
Gastrointestinal: Nausea (severe); Vomiting; Bloating (severe); Belching (excessive); Flatus (excessive); Diarrhea (burning); Crapping shards of glass; Hemorrhoids (internal and external)
Hematological: Anemia (Hgb 10.2); Drop in platelets, WBC, and Neutrophils
Musculo-Skeletal: Muscle and Joint Pain and Aches
Nervous System: Brain Fog; Inability to Concentrate; Poor Memory; Inability to do Abstract Thinking or Calculations; Tinnitis (ringing in the ears – severe, continual); Headache (mild but constant); Dizziness (frequent); Vertigo – (1 episode of severe vertigo lasted about 30 min.); Finger Tremors – fine motor tremors); Taste (everything tasted like cardboard); Restless Leg Syndrome; Romberg’s Sign (loss of balance when eyes were closed); Hypersensitive sensations like electric current in chest and abdomen; Hypersensitive skin – felt like deer flies biting me, also sensation of a spider crawling on me, also burning and prickling sensation of feet like they were wrapped in steel wool; Balance and Coordination Issues; Heavy Legs (felt like I was walking through 2 feet of mud with lead boots on)
Ocular: Dry eyes (like sand in them all of the time); Vision changes … mostly poorer vision, blurry vision, difficulty focusing on small objects or letters
Respiratory: Sinusitis; Dry cough (continuous while on Incivek); Shortness of Breath
Other Side Effects: Fatigue – severe; No Motivation; No Energy; Flu-like Symptoms; Low Grade Fever; Generalized Weakness; Extreme Dry Mouth (despite drinking over a gallon of water a day); Excessive Urination; Urinary Dribbling & Stress Incontinence; Sweating
For those who have attained SVR and stayed on the forum to help the rest of us, Thank You! For those who underwent treatment with me, offering advice and support, Thank You! For those for whom treatment did not work, hang in there, new treatments are on the way.
For those still in treatment, hang in there and fight tooth and nail to stay on treatment and attain SVR. When you get to the end of your rope, tie a knot and hang on. SVR is attainable. The big payoff for going through the ordeal of treatment is SVR and a Hep C free life. Yes, it is well worth it.
Just to recap my stats: Genotype 1; infected about 37 years ago; diagnosed July 2011; started Tx Sept. 2011; ended treatment Aug. 2012. Starting VL 14.4 million; Week 4 VL DET; Weeks 8, 12, 16, 20, 24, 28, 32, 36, 48 VL all UND; 12 weeks post EOT VL UND. 25 weeks posts EOT VL UND. No dose reductions. 48 wks of treatment.
(Pretreatment, I did have several extrahepatic manifestations: Systemic Vasculitis with Pericarditis, Pleuritis, & Hemolytic Anemia; Severe Fatigue; Gradually Increasing Blood Glucose; Unexplained Weight Gain; Sudden Onset Unexplained Allergies and Asthma; Dry Eyes; Dry Skin; Peripheral Neuropathy)
Worst Treatment Side Effects: Rash & Itching, Nausea & Bloating & Vomiting, Rectal/Anal issues (crapping shards of glass). These were the worst side effects I had in terms of misery and potential game changers. However, these side effects were compounded by the fact that my treatment team had no clue how to assess and appropriately treat the side effects. I had to demand treatment and they gave it reluctantly after several weeks of having the problems. I firmly believe if my treating team had been competent and had treated the side effects early on, I would have had a much easier treatment.
Other Side Effects. I am listing the other side effects I had so that people can see the wide range of side effects possible with these drugs. Some side effects stayed for the entire treatment and others waxed and waned. Some lasted only a day whereas others moved in for the duration. Some were severe and others were a nuisance. I have decided that these drugs can and do cause just about every possible side effect imaginable. There are many other side effects and I am listing only the side effects I had. If listing these side effects can help anyone know that they are not alone dealing with weird side effects, then it is worth it to list them. And none of us should have to put up with the docs telling us the drugs don’t cause the side effects we have.
Cardiovascular: Premature heart beats; Frequent episodes of rapid heart rate (tachycardia 180 beats per min); swollen ankles and feet
Dermatological: Rash ….. red skin, hives, wheals, confluent hives, macules, papules, pinpoint lesions, flat red-purple lesions, bright red lesions, dry scaling lesions, skin cracks/fissures (palms, fingers, knuckles), eczematous lesions, psoriasis type lesions; Itching continuous/widespread; Hair Loss – mild -mod.; Mouth and Nose Sores; also some weeping of the rash areas
Gastrointestinal: Nausea (severe); Vomiting; Bloating (severe); Belching (excessive); Flatus (excessive); Diarrhea (burning); Crapping shards of glass; Hemorrhoids (internal and external)
Hematological: Anemia (Hgb 10.2); Drop in platelets, WBC, and Neutrophils
Musculo-Skeletal: Muscle and Joint Pain and Aches
Nervous System: Brain Fog; Inability to Concentrate; Poor Memory; Inability to do Abstract Thinking or Calculations; Tinnitis (ringing in the ears – severe, continual); Headache (mild but constant); Dizziness (frequent); Vertigo – (1 episode of severe vertigo lasted about 30 min.); Finger Tremors – fine motor tremors); Taste (everything tasted like cardboard); Restless Leg Syndrome; Romberg’s Sign (loss of balance when eyes were closed); Hypersensitive sensations like electric current in chest and abdomen; Hypersensitive skin – felt like deer flies biting me, also sensation of a spider crawling on me, also burning and prickling sensation of feet like they were wrapped in steel wool; Balance and Coordination Issues; Heavy Legs (felt like I was walking through 2 feet of mud with lead boots on)
Ocular: Dry eyes (like sand in them all of the time); Vision changes … mostly poorer vision, blurry vision, difficulty focusing on small objects or letters
Respiratory: Sinusitis; Dry cough (continuous while on Incivek); Shortness of Breath
Other Side Effects: Fatigue – severe; No Motivation; No Energy; Flu-like Symptoms; Low Grade Fever; Generalized Weakness; Extreme Dry Mouth (despite drinking over a gallon of water a day); Excessive Urination; Urinary Dribbling & Stress Incontinence; Sweating
Congratulations Pooh! Yes, I loved reading your posts on treatment. You are a true inspiration! Fantastic job! Geeze, those dam side affects..Lydia
Thanks you for your continued support here. I for one when I was on treeatment read your post. I am so glad you got SVR . Thank God you are going be ok. Take care and we all love you here and value your advice and support. So glad you are free of this desease.
Big smile and hug
bbj
Big smile and hug
bbj
Pooh, this is beyond SWEET!!!!! Over and over again, you have contributed to others and in great detail, answering questions, with such commitment to keep us all on track. Your generous spirit will be with me for the rest of my life.
It takes a lot of strength to demand doctors, to do their part. You give us the courage, to advocate for ourselves, and make choices.
48 weeks and no dose reductions! Bravo.
SVR, woohoo!!!!!!!!
C
It takes a lot of strength to demand doctors, to do their part. You give us the courage, to advocate for ourselves, and make choices.
48 weeks and no dose reductions! Bravo.
SVR, woohoo!!!!!!!!
C
Congrats Pooh!!!!!! thats great news
i know i speak for everyone here when i say have a happy and healthy HCV free life : )
swimmer just about said it you have been so helpful to us all here nice to see something good come your way
you post listing all your sides is very helpful to us all as we can read it and refer to our sides i feel like we have all become like a big family here on this site because its hard for our own family to know just what we are going through thanks
i know i speak for everyone here when i say have a happy and healthy HCV free life : )
swimmer just about said it you have been so helpful to us all here nice to see something good come your way
you post listing all your sides is very helpful to us all as we can read it and refer to our sides i feel like we have all become like a big family here on this site because its hard for our own family to know just what we are going through thanks
Dear Wonderful, Awesome, Pooh,
I felt like I should log on today and am so happy I did. You did so much for everyone with your posts and responses. You were a great source of good information and inspiration for everyone. Not everyone who deserves SVR got it, but I am grateful to see that you are one of the people who did. You always sounded remarkably clear headed to me when you were on tx and did a fantastic job. (I was a real mess). Welcome to the SVR club and congratulations! I am so happy for you.
To those for whom the tx failed; as always Pooh has good advice. Hang in there. There should be kinder gentler tx headed your way.
Gerbils
I felt like I should log on today and am so happy I did. You did so much for everyone with your posts and responses. You were a great source of good information and inspiration for everyone. Not everyone who deserves SVR got it, but I am grateful to see that you are one of the people who did. You always sounded remarkably clear headed to me when you were on tx and did a fantastic job. (I was a real mess). Welcome to the SVR club and congratulations! I am so happy for you.
To those for whom the tx failed; as always Pooh has good advice. Hang in there. There should be kinder gentler tx headed your way.
Gerbils
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