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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
After reading your story I realize how hard you fought this virus and won! Congratulations to you. You are an inspiration to me when I feel so sick and tired I can read your story and feel your strength!
Thank you as well for all your detailed information regarding side effects.
Cangrats,
Shyrl
Thanks so much. I know you fought and won that battle, too, so we both know it is great to be free of Hep C.
You are so right, it was worth it. I could not have made it without you and all the people on here. It was very hard but made me know how strong I could be. I find I am really slow in getting back to my pre tx self but recognize I may never get there and have to be happy with that.
All my best to you
Dee
Thank you so much
All my best to you
Dee
Thank you so much
Thanks so much, Dee. I could not have done it without you and all of the other wonderful, supportive, and helpful friends on the forum. We all did it together. Sometimes I wonder how we did it, but we did do it, LOL. Many, including you, had it much harder than I did, but we all made it. Now most of us have attained SVR (most of us who started about the same time in 2011). And others are approaching and crossing the finish line, too. I love looking at Frijole's spreadsheets and seeing all of those SVRs. As hard as treatment was, it was all worth it. Thanks again. : )
Oh my gosh, day late dollar short me again.
I thought I had responded to your post, evidently not.
You have been one of the best members on here, so informative, so willing to give so much of yourself, I had to come back here and comment.
You are much loved, respected and admired here.
I read all of your posts, not sure how I missed this one. I hope better late than never :)
I am so very happy for you. It was such a hard time, I salute you dear Pooh.
Bless you
Dee
I thought I had responded to your post, evidently not.
You have been one of the best members on here, so informative, so willing to give so much of yourself, I had to come back here and comment.
You are much loved, respected and admired here.
I read all of your posts, not sure how I missed this one. I hope better late than never :)
I am so very happy for you. It was such a hard time, I salute you dear Pooh.
Bless you
Dee
Pooh, You have definately been a beacon of light through so many dark days. You rock. You are free. let me say that again - You rock, You are free. That felt double good. Congratulations to your loved ones. I salute you fierce warrior. Long live the Queen!
How did I miss this news. I really can't say how happy I am for you.
I hope this is the beginning of many happy and healthy years.
Another angel has got her wings and you truely deserve them.
Reva
I hope this is the beginning of many happy and healthy years.
Another angel has got her wings and you truely deserve them.
Reva
I wanted to add my congratulations to the already large list of people, but to also compliment and thank you for your wise posts and compassion.
You have provided help to many people and also set a high bar on the quality of your answers. Kudos and thanks.
Wishing you a speedy recovery and return to a normal life post TX.
willy
You have provided help to many people and also set a high bar on the quality of your answers. Kudos and thanks.
Wishing you a speedy recovery and return to a normal life post TX.
willy
OH, Frihole, Scherpie, Dino ..... Thank you so much. Could not have done it without all of you.
Dino: Congratulations on finishing Tx. It takes a while before the side effects leave. At least it took mine a while to leave. Little by little I felt better and periodically I would realize I no longer had a certain or certain side effects. I am 26 weeks post EOT and mine are mostly gone. Even my gums have improved considerably and I will NOT need a dental graft (just found that out today). So hang in there. I am sure you will feel better as the days go by.
Dino: Congratulations on finishing Tx. It takes a while before the side effects leave. At least it took mine a while to leave. Little by little I felt better and periodically I would realize I no longer had a certain or certain side effects. I am 26 weeks post EOT and mine are mostly gone. Even my gums have improved considerably and I will NOT need a dental graft (just found that out today). So hang in there. I am sure you will feel better as the days go by.
3 weeks post treatment, still have side effects. cant sleep, tired all day, feet hurt bad, chest pain (no heat issue), brain fog. Sometimes I cannot talk right. The words come out wrong. I hope all this ends soon.
It must be nice to finally put all of this behind you. It has been a long haul, pooh, and the treatment is such an isolating ordeal, it will good to reenter the planet earth. My best for an active and hep-c-free life.
bean
bean
Thanks Mike and Stormy. And thanks again to everyone of you. We are all in this together.
I don't know how I missed this but I did.
So a belated..............CONGRATULATIONS ON YOUR GREAT NEWS!!!!!!!!!!!!!
Stay well,
Mike
So a belated..............CONGRATULATIONS ON YOUR GREAT NEWS!!!!!!!!!!!!!
Stay well,
Mike
Wow-that was an impressive list of side effects ;) Congratulations, Pooh!! Such wonderful, wonderful news.
Thank you all for so many wonderful comments and sentiments. Here's hoping everyone attains SVR!
really nice post here!....good work ...good info....have a great time svr !....billy
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