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
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.
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
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!!
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!
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.
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
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.
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 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.
CONGRATULATIONS, CONCRATULATIONS& CONGRATULATIONS AGAIN, its absolutely fantastic news you must be over the moon and very proud of yourself and rightly so. Best wishes and love all the way from England x
Whew-hooo, Pooh! And thank you for documenting your extra-hepatic symptoms, which I had some of, also. This is something that we need more research on. All of the time you put into educating people on here is extremely valuable. These Hep C Support Groups are literally, life-savers :)
Pooh I cannot begin to say how happy I am for you. I am sorry your treatment experience started out so horrid. Having said that it was your tenacity and extensive research that paved the way for others and set the ground for treating the side effects of Triple therapy with Incivek here on Medhelp. Until then there were not many helpful detailed posts with data related to the many side effects of Incivek much less effective ways to treat them.
I am sorry it worked out that way but grateful for your perseverance in understanding and 'teaching the framework for SOC for triple with Incivek here on the forum. It saved me a lot of time and grief and I see it continue to do so for others.
I wish you peace & good health with SVR♫
glad to hear you got SVR. you are both an inspiration and a fountain head of knowledge. i thank you from the bottom of my heart for all your wonderful advice and encouragement over the past 73 weeks. i had labs on tuesday, 25 weeks post-treatment, and found out yesterday that i am also SVR.
A bit late for the congrats - sorry, out of town and just saw this. Now that you are "officially" SVR I bet this is a bit of a relief to have this behind you. Even though we know the odds after a UND post eot at 3 months, it still lingers that might be in that miniscule percentage. Now, no more worries. A life with no HCV to worry you and compromise your health. Hope you have a full recovery with good health.
Thanks for all of the support that you've given the forum members. And thanks for being a friend. :)
This is the best news I ve heard lately.I am sooo happy that you can finally live your wonderful SVR life .You gave me and others lots of support which I will always treasure and remember. CONGRATULATION!!!!!!!!! I am done with my Tx as of yesterday.Last 4 months were very tough!Now waiting for EOT lab results.
Congratulations!!! And thank you so much for you input here. You have been a life saver. Dr just are not up on the side effects of triple tx. I have received more info from you, Hector and misc others than my DR could give. They just do not know yet. Your help has save me and my sanity. How can I thank you??? Stay healthy and happy!!!!!! Thanks!
pooh...you're awesome!!!! thanks so much for all the support you give to others. i know you helped me. congratulations on SVR. i've always loved reading your posts. you're an inspiration to all of us here. thanks so much. have a great healthy future without HCV. belle
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.
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.
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.
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!
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.
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. : )
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
Thank you so much
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.
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