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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
Pooh what asbolutely wonderful incredible news! Knew you would make it...but it's still nice to see it in PRINT!
YAY! And yay for all you have done and continue to help. KICKED HCV BUTT! :)
YAY! And yay for all you have done and continue to help. KICKED HCV BUTT! :)
Awesome - another svr giving the rest of us even more hope. You deserve it. Thanks again for chiming in on my posts. This is worthy of dinner at the best restaurant in town!!
Hooray and congratulations for winning the war! Thank you for continuing to post here and help the rest of us.
Pooh I am sooo fricking happy for you! Such wonderful news. With what you have been through it really gives us ALL hope. Thank you for everything.
Thank you all so much! We can beat this disease, one SVR at a time.
I forgot one side effects, LOL, and that is gum recession lower front (3 teeth). So keep an eye on your gums!
I should also mention, ALL of those side effects are now gone except for the gum recession and some lingering psoriasis type skin problems on my face, arms and neck. Even the psoriasis is better than it was and I am hoping it clears up eventually.
I forgot one side effects, LOL, and that is gum recession lower front (3 teeth). So keep an eye on your gums!
I should also mention, ALL of those side effects are now gone except for the gum recession and some lingering psoriasis type skin problems on my face, arms and neck. Even the psoriasis is better than it was and I am hoping it clears up eventually.
Congratulations Pooh, I am soooo so happy for you. This is such great news to hear before weekend. It makes it also so much more bearable for the rest of us still treating knowing that there is hope at the end
Congrats pooh, this is fantastic news, time to break out the red shoes :)
Enjoy your hep c free life
Keith
Enjoy your hep c free life
Keith
So happy for you pooh!!!!! I sent you a note today because I thought I missed your good news. Your not accepting callers at this time. :-) :-) Well great news!!!
Congratulations Pooh! I am very happy for you...VERY! You have been so helpful to me in my journey through treatment...I have learned such a great deal from you. This is your day....enjoy the feeling and.... the rest of your life for that matter....HEP C FREE!!
That is is AWESOME news and thanks for sticking around and help not only me but others as well!!!!
I LOVE logging on and seeing your post! It is great seeing it in print. You've helped us all tremendously. You deserve some more good news. xoxo Karen:)
Yay!!! That is wonderful news. Thank you for all the wonderful information and answers that you dispense here. I've learned so much from your posts.
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凸 (^_^) 凸
Hector
凸 (^_^) 凸
Hector
Hey thats fantastic news. Congratulations!!!!! Wow what a feeling that must be! And thank you for your posts and staying around on this forum helping those of us still on the long journey.
Thank You, Everyone! I could not have done it without all of you.I will be forever grateful for your support and knowledge.
Hector, I don't know how you make all of those things in your posts, but I really love them.
Here's to SVR for Everyone!
Hector, I don't know how you make all of those things in your posts, but I really love them.
Here's to SVR for Everyone!
I just logged on feeling sorry for myself and my balding head. Thinking about quitting and then there was this. It brought a tear to my eye. You hung in there for 48 weeks with all those nasty sx it inspires me to push on for my last six weeks. WELL DONE!
Thanks.
I hope that my post inspires everyone to stay on treatment and attain SVR.
I did not have a picnic on Tx, but I honestly must state that some others on the forum had it much worse than I did, and they stayed on treatment for the entire Tx or until they medically could no longer continue. I was very lucky in that my blood counts never dropped to critical levels so I avoided the added drugs of Procrit and Neupogen, which have their own side effects. While many people had severe side effects and many people inspired me to continue treatment, I think Karen (crossroadsec) stands out as a real fighter and inspiration. If I got discouraged, all I had to do was to think of Karen and everything she was going through, and I knew I could continue. And, of course, Hector is another real fighter. My side effects were nothing compared to what Hector lives with every day. Sometimes it helps to put things into perspective if one looks at what someone else is going through.
I hope that my post inspires everyone to stay on treatment and attain SVR.
I did not have a picnic on Tx, but I honestly must state that some others on the forum had it much worse than I did, and they stayed on treatment for the entire Tx or until they medically could no longer continue. I was very lucky in that my blood counts never dropped to critical levels so I avoided the added drugs of Procrit and Neupogen, which have their own side effects. While many people had severe side effects and many people inspired me to continue treatment, I think Karen (crossroadsec) stands out as a real fighter and inspiration. If I got discouraged, all I had to do was to think of Karen and everything she was going through, and I knew I could continue. And, of course, Hector is another real fighter. My side effects were nothing compared to what Hector lives with every day. Sometimes it helps to put things into perspective if one looks at what someone else is going through.
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Herpes sores blister, then burst, scab and heal.
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