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Why am I afraid to take the medications? 8 years 5 months ago #2770
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I'm posting this because it is actually quite common. I had one patient's family ring me. He was in hospital having had ascites drained. They had the medications to hand but had been delaying giving them. I insisted they go to the hospital and give them. The patient in question, some 2 weeks ago had a MELD score indicating a 20% 3 month mortality. Things have got better and this risk is now reduced to 6%. Still not great but much better. For this patient the future looked like a game of Russian roulette with 5 bullets and 1 empty chamber. On treatment it looks like 1 bullet and 5 empty chambers. I know which game I would prefer. Fear of the unknown is an instinctive response designed to keep us safe. This website exists in part to help reduce that fear that bad things will happen taking generics. We don't censor anything other than spam, so what you're reading is everything everyone is saying. These medications do have risks with an approximate 1:5000 death rate on treatment, and a 1:100 rate of significant side effects. The off treatment death rate is 1:10 and the chronic HCV effects are well known and impact > 1:2 - fatigue, brain fog, depression, loss of hope, fear of infecting others.... I know which set of odds I would prefer. There is a phenomenon called Stockholm Syndrome where hostages start to feel empathy for their captors. Like it or not HCV has become part of your identity and for some people there will curiously be a sense of loss when they get cured. The treatment experience is usually nothing short of miraculous with 3 days of feeling slightly under the weather (like a hangover or the beginning of influenza) and then within a week feeling better than in 20 years. These medicines are possibly the best development since penicillin where people who were going to die miraculously got better. If you have your medications but are afraid to start consider this. Brave you of several weeks ago decided to take a leap of faith. Scared you today is second guessing brave you. Listen to brave you. He or she knew best. Get a glass of water, open the bottles, and take the medicine. The only thing standing between you and a better life is fear. Don't let it. YMMV The following user(s) said Thank You: dointime, tweakmax, LondonGirl, coral, SShady43, CJ, Chejai, Jan-Dowling-facebook, Ariel, Gaj, Lynne-Francis-facebook, beaches, IRMA88, isaing4, Another Attempt, Kathryn, Sven, Murr | |
Why am I afraid to take the medications? 8 years 5 months ago #2771
As you ramble on through life Whatever be your goal Keep your eye upon the donut And not upon the hole. Huon Valley, Tasmania Hep C+ since 1980s Genotype 1b F3/4 VL 480,000 Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015 UND at 4 weeks Finished treatment 19 November 2015 12 February 2016 UND SVR12 | |
Why am I afraid to take the medications? 8 years 5 months ago #2772
I wrote this after a doctor friend, who I used to fly with, died in a hang gliding accident. The Path We Choose Do not shed a tear for me For I would not for you Instead just drink a beer for me And know well that I knew Dreams of flight do not come free There comes attached a price And we do not do it blindly We know we roll the dice Before you sail into the sky A sky slow to forgive Ask am I, afraid to die? Or just afraid to live? So if you try, to question why When fate can seem unjust We take these risks, not to escape life But to stop life escaping us YMMV | |
Why am I afraid to take the medications? 8 years 5 months ago #2787
That's beautiful Dr James. x J the young dragon slayer is: HepC 1a since birth Male aged 15 VL 2000000 Started Twinvir/ 10-11-15-then Sof/led. NO sides so far ! after one week VL : 37 after 4 wks VL : UND ! EOT 2/2/16 UND.! 4 wks. post tx results....pending.... 7/3/16 VL result : 4 week post tx: SVR ! 12 weeks SVR ! 24 wks SVR yeeaa!! The following user(s) said Thank You: DrJames | |
Why am I afraid to take the medications? 8 years 4 months ago #6119
| Ive been on this forum for a month or so and have only just read that poem...WOW SVR 24 The following user(s) said Thank You: DrJames |
Why am I afraid to take the medications? 8 years 4 months ago #6376
I hesitated at first pill, fear of the unknown. But I wanted so much to be healthy again. I wanted so much less harsh treatment than interferon. I refused Interferon 5 years ago when there was no alternative. Now I'm glad I did. Who does not risk anything will not win anything! PS Very true what you say so beautifully in this poem, Dr. James. HCV since I don't know. Diagnosed in 2010. GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive, started 12 wks Twinvir on 06.12.2015. Feeling great and grateful virus not detected 06.02.2016 & SVR24 This email address is being protected from spambots. You need JavaScript enabled to view it. The following user(s) said Thank You: pat1 | |
Why am I afraid to take the medications? 8 years 4 months ago #6416
You were right about refusing interferon. If I knew about side effects I would never went on it. Luckily after 12 weeks I was pronounced nonresponder and quit therapy. I've met people that was cured by 48 weeks hell of pegi/riba therapy, and year after tx end still have numerous strange side effects. I've heard of possibility that things can go wrong with new DAA, but that is a risk I'm willing to take. My viral count is steadily growing and strange headaches, brain fog, and itching are also emerging, so I'm not preparing to wait of a miracle happening in Serbia, like it happened in Australia with PBS approving cheap therapy. For me miracle started when I found Greg's blog in May just after stopping interferon/riba tx. Genotype 1b & 4, F0/A1, failed Peg&Riba TX 2015, 22 Jan. 2016 - Back from Delhi with 12 week Ledifos supply Started TX on 27.Jan.2016 - AST 41, ALT 59, GGT 39, ALP 74, VL 500.000, Fibroscan 6.8 19. Feb 2016 - ALT 14, AST 14, GGT 19, ALP 107 19. Apr 2016 EOT - Undetected 26. Apr 2016 (1 week after EOT) - ALT 14, AST 17, GGT 12, ALP 77 28. Aug 2016 (17 weeks after EOT) - UND, ALT 15, AST 12, GGT 5, ALP 39 The following user(s) said Thank You: pat1, Another Attempt | |
Why am I afraid to take the medications? 8 years 4 months ago #6431
Thanks for this post I am just waiting my treatment to arrive and yes feeling anxious in fact I just wrote a private message about it then found this awesome page (I am a nwebie here and about to get my meds) . I think after relapsing post tx interferon it must be normal to be anxious! This is a great thread, thanks so much loving the affirmation. Happy New year to us all Gen 1a Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas. pre sof/led VL 240,000 Fibsc F0 Day 25 <30 Day 32 UND Week 10 UND EOT UND ALT11AST17GGT19 SVR4 UND ALT10 AST16 GGT13 SVR8 UND ALT <9 AST16 GGT15 SVR12 UND ALT14 AST19 GGT12 Bili 5 EOT +18 ALT13 AST20 GGT9 Bili 5 EOT +21 ALT11AST15 Cured SVR12 Dysplasia Adenomas RemvdAug '16 SVR24 UND ALT11AST16 ColonoscopyClear Nov17 LumpectomyClear ‘18 LithotripsyCytoscopyBiopsy 4/18 The following user(s) said Thank You: LondonGirl, Another Attempt | |
Why am I afraid to take the medications? 8 years 4 months ago #6436
Hi Ariel, welcome to the forum. After failing the old drugs I wouldn't blame you at all for being a bit apprehensive! You know its not going to be anything like that I should finally start tx on Friday,on the Redemption-2 trial...got a few anticipatory butterflies too lol GT1a since 1988, diagnosed 1990 F0, tx naive VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9 Started Mesochem sof/dac 12 weeks 01/01/2016 11/02/2016 - 6 weeks UNDETECTED AST 26 ALT 26 The following user(s) said Thank You: Ariel, Another Attempt | |
Why am I afraid to take the medications? 8 years 4 months ago #6438
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About time Nothing to worry about you'll be fine mate. Two time relapser. SVR 4 achieved 12/16 at last SVR 12 achieved 22/02/2017 The Bastard has been defeated GT 3 - about 28 yrs with HCV |
Why am I afraid to take the medications? 8 years 4 months ago #6442
Ha, thanks Paul! I'm sure I will, appreciate the vote of confidence Definitely the month that took several years to pass lol GT1a since 1988, diagnosed 1990 F0, tx naive VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9 Started Mesochem sof/dac 12 weeks 01/01/2016 11/02/2016 - 6 weeks UNDETECTED AST 26 ALT 26 | |
Why am I afraid to take the medications? 8 years 4 months ago #6447
Hi Ariel and welcome! Yes, go for your it ! And let us know about your story. You will see that is an easy treatment and also very powerful. Happy new year! HCV since I don't know. Diagnosed in 2010. GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive, started 12 wks Twinvir on 06.12.2015. Feeling great and grateful virus not detected 06.02.2016 & SVR24 This email address is being protected from spambots. You need JavaScript enabled to view it. The following user(s) said Thank You: Ariel | |
Why am I afraid to take the medications? 8 years 4 months ago #6448
Hi Zhuk, Happy for you! The world will not be the same after starting the treatment! It will change in a good way. Happy new year and happy treatment! HCV since I don't know. Diagnosed in 2010. GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive, started 12 wks Twinvir on 06.12.2015. Feeling great and grateful virus not detected 06.02.2016 & SVR24 This email address is being protected from spambots. You need JavaScript enabled to view it. The following user(s) said Thank You: Ariel | |
Why am I afraid to take the medications? 8 years 4 months ago #6449
Thanks very much isaing4, fingers crossed GT1a since 1988, diagnosed 1990 F0, tx naive VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9 Started Mesochem sof/dac 12 weeks 01/01/2016 11/02/2016 - 6 weeks UNDETECTED AST 26 ALT 26 | |
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