Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: hopeful304 on September 17, 2014, 04:15:36 am
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Hello all, I am on my 2nd week of treatment with sovaldi/Olysio off label treatment for hepc. I found out I have hepc in november of last year. I was surprised but not shocked bc I am a former drug user. (May as well be honest lol) ever since my diagnosis I have been on a mission to get treated. I was tested bc I was running low grade fevers and feeling awful everyday
. I am very lucky in that I do not have any co- infection (bc of history) and the new treatment was about to be approved when I saw my first GI doctor. Bc I also have depression my doctor put off treatment until he saw that the sovaldi/Olysio study. I am currently being treated for depression and hepc. The 1st few days of treatment I felt wonderful better than I have in 5 years. I got very excited about the possibility of treatment without any side effects. But, after 6 days I started feeling exhausted, having insomnia and headaches & joint pain with occasional stomach cramps. These headaches are sudden out of nowhere on the left side of my head they're like an ice headache it comes on so fast and just when I think it's going to burst it is gone. This is like 1 minute of such severe pain I can't talk or move until it's gone away. The first few times I brushed it off as just a thing that happens and probably never will again. But now it's happened off and on so many times I am starting to wonder if it's something to worry about. I take ibuprofen already as my daily routine bc of back pain I've had for a few years, so I don't know of anything else I can do. I am NOT going to take pain meds bc of my history. Is this something any of you have experienced?? Are my symptoms common on the s/o treatment or am I a big baby lol I recognize that alot of you had the awful treatment before the new meds and this should be a cake walk for me. I can get through the other symptoms but the headache thing is too much. Suggestions? ??
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hi hopeful,first of all your not a big baby, i am on my third bottles of s/o and i am also bipolar and depression rides along with me too, plus i have had some bad injuries over the years so i am also on Oxycontin which i have been on for years,, yes, i got headaches after about a week,they got better after 2 week, yes the first week i felt kinda euphoric, but that that went away, i get tired easy but then i sleep,and it seems like i have been sleeping for hours but when i open my eyes it has only been an hour or two so i read under a dim light and i dose off again,yes i get a sick rush here and there,tingling in my hands and arms about a half hour after i take s/o[around 630pm after i eat i take most of my meds]something i wish and thought would go away by now is the pain in my liver area which still gets pretty intense at times. if anyone reading this could give me somefeedback on that i would appreciate it. anyway hopeful we are all different due to previous meds we are on but your symptoms seem to be on course with mine.yesterday was the first REAL bad day i have had mentally as well as physically,,just plain crazy. we are lucky we are on the s/o treatment because it works and has less side effects, some folks hardly have any! BUT watch out for the sun, eat little good snacks thruout the day, drink healthy liquids and before you know it weeks go by. i am praying for you..''just'' Willie g
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Hi Hopeful,
I don't have personal experience taking the S/O combo, but headaches are one of the most common side effects of Sovaldi (along w/ fatigue). I've also heard about patients who have what Willie described to you - it comes on for a few weeks, and then improves. I had that kind of headache when I took Sovaldi. I had great results with acetaminophen which I took one 500 mg tab when I felt a dull headache coming on, and it never got worse. If I tried to muscle through it, and the headache got worse, the acetaminophen was useless. Although I did get a few stabbing headaches without the dull onset, they were brief and by the time the meds would have kicked in, the HA would be gone, so I didn't take anything. Talk to your doc about these to be sure this is med-related - sometimes we just get other medical problems, and this needs to be addressed.
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I am so glad I heard back from you both. I am by myself most of the time; 12 hours away from my family so it's nice to get feedback & support from others. I knew going into this it would be very trying at times physically as well as emotionally. The promise I made to my family: I will be my old self the next time you see me. I had been on alot of pain meds bc of my back and it got way out of control. You could not have made me believe I would end up so addicted to something a doctor prescribed me. But I was. I have been free of anything for a long time now. Unfortunately bc of that and how far down I spiralled I contracted this lovely virus. So it was one more thing for me to work through while I am away. I miss my family so very very much. Nice having another place to get support . (I have learned how much other people have to offer each other) certainly has been a humbling experience.
Enough about me. Willy G & Lucinda how have you been today? How far into treatment are you?? And how has your response been when you've had the blood checks?
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hey HOPEFUL, i didn't sleep much last night so i assume ill crash after this,i feel OK though, pain has subsided in my liver area this am,i am hoping it goesaway when or before treatment is done. i am into my third set of s/o[9 weeks or so, i use to keep track day to day but i have enough to remember lol somedays i think i dont feed the dogs ad other days i think i over feed them lol you have brain fog a little more whenon these meds. they say to write things down, that helps they say but i always loose the pen so what are you gonna do? somedays its a touchdown, other days its a punt[man, where the heck did i come up with that one]ya, pain pills are addicting but i have been on oxi for 10 years and i have a good dr. who doesn't like giving out narcotics especially these days but he knows my situation and i have to take urine tests once a month to make sure i am taking them[federal law now] alto of people sell them for big bucks,,, its weird i don't abuse them and i have extras every month.in the old days i would take anything to get a buzz but like they say when your pain is real in most cases you take them for the right reason plus i know personally how easy it is to abuse them,, heck you might as well say i am an addict because their pure and their synthetic heroin,IT definitely would not be a nice ride coming off of them, and my Dr. doesn't re comend it because of that and because i have been on them so long. i got issues, that's for sure, and meds do not help your liver but what are you gonna do? go for the touchdown, punt it,or run it in. wow i better get in my coffin, the birds are chirpping,, one day at a time buddy,, hope, faith and LOVE will keep us going. 'just'' Willie g,, PS, Lucinda has been at This since 1997,or longer,she is our sweet moderator, she went thru hell to get on track, she has written two books that really help,they helped me,Lucinda porter[author] you should check them out, they are, reasonable,,plus they have a book called hep c for dummies[the dummie books] i have all the dummie books and i still need a translator,, oh boy, lol nite
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oh ya, i was undetected at 6 weeks in, that seems to be the protocol on these new drugs, SO SMILE,,YAYYYYY
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Hopeful - I am cured and great - thanks for asking. I am looking forward to celebrating your good news, so please keep us posted.