Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: lporterrn on October 21, 2015, 12:05:22 pm
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I read something today in Greg Jefferys' blog (http://blogs.hepmag.com/gregjefferys/2015/10/hepatitis_c_treatmen_17.html (http://blogs.hepmag.com/gregjefferys/2015/10/hepatitis_c_treatmen_17.html)) that I had not heard before:
Of course some people do get side effects from Sof + Dac and Sof + Led and I was discussing this issue with a doctor the other evening.
He explained that it is mostly a weight based issue. Because both these DAA combos are a "one dose fits all" tablet people with a small body mass are going to have more difficulty dealing with any side effects. For example a person of 60 kilograms of weight is essentially taking double the dosage of a person of 100 kilos of weight. So obviously any negative effect of the drug combo is going to exaggerated in the thinner person.
This seems so simple and logical, I can't believe that I hadn't heard this before. So my questions are, "Is this true?" (Does anyone have scientific support for this?) And, are the people on this Forum who are having side effects generally smaller than those who aren't? Hope to hear back from some of you.
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I thought about this and the weight issue. I wasn't on combo of drugs listed but Harvoni, and I am small to medium, female, 130 lbs. and it didn't seem to fit for me... very few difficult side effects overall and I have seen others who weigh much more have a very difficult time with many side effects.
Seems to me it could be a factor but there are numerous factors at work in each individual, depending on health, and a myriad of factors. I'm no expert, just my two cents.
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Thanks Bree!
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Iportern,
they may have something there. I went thru the pegasys and ribapac in 2009. at that time I weighed 225 and 6' tall, just had major fatigue (I would sleep for 8 to 10hrs easily) and mild riba rage. was diagnosed with diabetes type 2 around that time and dropped to 175 losing almost all of body fat and some muscle mass. about 6 months before the sol/dak/riba combo that I am now on, I had a infected tooth and was on antibotics for 2 months and dropped down to 160. I am now experiencing muscle aches and joint pain, along with mild short term memory/fogginess? problems and some fatigue but having problems getting enough sleep (2-3 hrs, normally I just sleep around 5 hrs), but no riba rage problems. I am back up to 168 now and on week 5 of this tx.
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Makes sense. I'm not on ribavirin but I thought that was already weight-based. ???
Anyway, I'm 6'0" and currently 182 lbs. Should be 162 lbs, but Harvoni has made me ravenous. (I love having an appetite again after a noticeable absence of about 6 years at least, but fortunately have stopped gaining.)
Other than that, side-effect free. Yay! :D
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follow up on previous post, I am now half way thru tx 12 wks more to go. I now weigh 176, still have muscle aches and pains but not as bad. the memory loss/fogginess is going away. still having problems getting enough sleep but getting 4 to 5 hrs now. seriously rundown but this could be due to riba causing anemic so started EPO injections last week, reading right before injection HGB 8.9 (ref range is 13.6 to 18). I am taking Sovildi 400mg and Daklinza 60mg once per day and Ribavirn 200mg 2 in am and 2 in pm, was on 5 a day but doctor had me drop down to only 4 per day when my HGB dropped to 9.9 2 weeks before EPO injection.
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Chuck, your liver function lab work looks great! Congrats on being half way home. Sorry to hear about the rundown-by-riba, but it looks like your doctor is keeping a close eye on you. :)
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I'm 136 pounds, but I'm slightly overweight for my frame/height. I do notice the side effects of Harvoni, but overall, I don't think they're that bad. I think I notice it more because I've been fairly healthy and have never taken medication before. (I've taken antibiotics and ibuprofen. That's about it.)
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I read something today in Greg Jefferys' blog (http://blogs.hepmag.com/gregjefferys/2015/10/hepatitis_c_treatmen_17.html (http://blogs.hepmag.com/gregjefferys/2015/10/hepatitis_c_treatmen_17.html)) that I had not heard before:This seems so simple and logical, I can't believe that I hadn't heard this before. So my questions are, "Is this true?" (Does anyone have scientific support for this?) And, are the people on this Forum who are having side effects generally smaller than those who aren't? Hope to hear back from some of you.
I have been on Sovaldi and Daklinza for just over 9 weeks (Yay...less than 3 weeks to go!). I am petite at 5'3" and 106 lbs. I have very mild sides...mainly headaches which respond well to drinking plenty of water. I really haven't noticed any fatigue (I did notice significant fatigue over the past couple of years prior to starting the meds). I believe my fatigue has actually improved since starting treatment. My muscle/joint aches....maybe some mild improvement. I think I might be unusual (and lucky) in terms of escaping significant side effects, however.
It does seem very logical that side effects might be weight-based and possibly some gender differences as well. I might just be an oddity. :-)
Mary
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Hi lucinda,
For the record I am 178 and weigh 63kg.
I have always had a fast metabolism and found it extremely hard to put weight in.
As far as drugs go, I have always had a hard time with side effects and my thoughts on why have now been substantiated.
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Hi all
I have just started a 12 week course of Harvoni and am now in day 7, seven tablets taken at 6am in the morning. I have had Hep C now since 1991 and have had two other treatments that were quite upsetting, one in 1997 that nearly made me kneck myself and another in 2013 that wasn't quite as bad but it was not pleasant at all , both had really bad side affects aspecialy the first one. Well day 7 of the new treatment with Harvoni and things a going very well indeed, get out on my bike every morning and do 30 plus Kim's then when home brekky and a tablet, must share the symptoms l am enduring so far, get a little tied by day's end, nausea, constipation, hot flushes other than that l feel pretty dam good and if this is as bad as it gets l am more than happy to continue to the end if it means totally clear of the virus which my specialist has told l will be, here's hoping and fingers crossed.
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Fantastic Gonzo!
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Welcome Gonzo! That's great that you've got your first week of Harvoni under your belt. :)
kim
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Hey, congratulations! Feels pretty damned good, doesn't it? Tomorrow's Day 7 for me too, and I've felt fantastic since the beginning. Woke up the morning of Day 2 feeling better than I have in 20 years or more, and I'm still feeling somewhat better almost every day.
I did have some weird sides on Day 3, mostly gastrointestinal but some "spacey" head stuff going on as well. But, I was fine the next day. Other than that, the only problem I have is insomnia. That's my only side effect currently, and it's really bad and getting worse every day. Started our averaging about 5 hours of sleep a night, then about 4, then about 3... on Sunday night, didn't get to sleep until 4:30, then I slept 2 1/2 hours woke up at 6. That's the last time I was asleep; this is Tuesday night and I've been up since 6 AM Monday morning. They prescribed some Ambien today, and I'll take some in an hour or so, but damn. Hope you don't get this side too.
Good luck the rest of the way. Hope it just keeps getting better every day!
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Go Gonzo and Baxter!
Welcome to the club.
Have just started taking Iberogast for my upset stomach caused by dac/sov and it has made the world of difference.
Baxter, Hope you have a fantastic nights sleep.
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Linda, that would explain a lot. Not that my sides are all that bad: I get a headache every now and then, where I wasn't having them before, and have been since my third week. They are mild, though, and go away without intervention.
But I'm down roughly 40 pounds, and this might help explain how I could be undetected at two weeks. Maybe body mass/dosage works both ways. In fact I think it would be odd were it not so.
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Hallo again
I have a few questions to all those on here going through or finished their treatment.
Do you feel generally better with your health and yourself ?
When you finished the treatment were there any side affects to not taking the meds ?
I find this forum very interesting and great value hearing so many positives from so many great people, cannot wait till l can say to all on hear.... I am cured of this horrible monster that has been part of my life for 35 years
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Welcome, Gonzo. I have more energy after treatment than I had before treatment, but DURING treatment I had even more energy (I miss that superabundance of energy). Other than energy, I don't notice any outward physical changes. Before treatment, my laboratory results were getting worse every year, so it is a good feeling to have normal liver enzyme numbers and a lower number for the test that estimates the risk of getting liver cancer. I also like being able to say "I HAD hepatitis C" rather than "I HAVE hepatitis C." Being cured has meant I could cross one extremely big problem off my "to-do list."
Every good wish to you during your treatment.
Gnatty
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Hey, Gonzo. I'll be finishing my first four weeks of Harvoni tomorrow. I can't honestly say that I consistently feel all that much better yet, though my two weeks' lab numbers are all good. At my two week blood draw my liver and metabolic numbers were all in the acceptable range, where they were all out of whack before treatment. Also, my viral load was undetected, down from 14.7 million.
Some days I feel better than others. For example last night I slept nearly 11 hours; the night before, ~1-1/2 hours with a 1-1/2 hour nap the next morning. Some days I have more energy than others. I think my liver is still trying to get accustomed to not being constantly under attack. My appetite has been voracious for the last couple of weeks, which is good.
Sounds like you are pretty healthy, aside from HepC of course; you should do well. Hey, best of luck to you, and keep us informed whenever you feel like it.
Bike riding is starting to sound pretty good about now. I think I'll dig mine out of the shed. ;D
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Hi, Gonzo. Welcome to the forum. I hope your treatment goes well. I'm nearly finished, but I'm not on Harvoni. I noticed early on I had severe loss of appetite, but after several weeks it changed to ravenous hunger. Despite that I've lost 3 Kg since starting treatment.
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Hey good luck with your treatment, where abouts in Australia are you ?
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Thanks. I'm in Melbourne. Are you in Aus too?
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Yes l am in Sunny Queensland, got my HepC while living in Melbourne some 35 years ago from a tattoo shop in Richmond.
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Wow. I got a tattoo about 35 years ago from a tattoo shop in Bridge Rd
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Now that is scary, l had my tattoo done in Bridge Rd Richmond by a guy named Dicky Reynolds and his shop was just near the old picture theatre some 38 years ago, met another guy in Qld who also had a tat done by him around the same time and he has the HepC virus as well.
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Small world. I used to go to the Valhalla to see movies regularly. It's the same shop, but a different artist. The guy who did mine had the same name as a guy in a famous British rock band. I have always assumed I got my Hep C at the same time as I came down with an acute hepatitis. It was diagnosed as Non A - Non B, at the time. If that response in the body can be delayed it's possible I contracted it there too and not later via accupuncture as I always believed. Will never know for sure but it sure is a suspicious coincidence.
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Welcome Gonzo - a fellow Australian! :)
I'm in Tamworth. I finished treatment last Sept and have just had my 24 week post treatment test - all clear. I have some issues hanging over from having had hcv, but I was really sick so no surprise. I feel good, plenty of energy, work full time in a demanding job, travel a lot and keep up a pretty full schedule. I'm so pleased I no longer have the virus - I had it for 28 years - half my life.
Getting that all clear was the best thing ever. Are you accessing DAAs through a clinic up there?
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Great stuff hearing you all clear mate, what are DAAs mate ? I am getting the 12 weeks of Harvoni treatment for $35 a month via the government rebate system which was approved on the 1st of March 2016.
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DAAs are direct acting antivirals - like what you are taking. As opposed to the olden days of interferon and the like.
I was lucky (and sick) enough to get a spot on a compassionate access program early last year so I am 6 months hep c free. It's a good feeling!
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Well today is week three, 21 tablets of the Harvoni and I must say I am feeling pretty dam good.... still getting out nearly every morning and riding my push bike 30klms and also still able to get on my motorcycle at the race track and enjoy myself. Few strange side affects like feeling a little hazzy for 4 hours after taking the tablet and sore eyes and of course minor headaches but if that's all I have to put up with then this is gunna be easy, now its just a case of blood tests and see how it going, fingers toes, every thing crossed for a good first result.
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Such good news Gonzo. How wonderful that the federal government is giving EVERYONE with HCV the opportunity to access treatment.
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Hi all, I take day 56 pill tomorrow of Harvoni and have had very, very few sides thus far. My BMI is 21, small-med frame female......... and feel better than I've felt in years. I'm overall pretty healthy other than the HCV, don't take any other meds except OTC antihistamines as needed. There is still a lot we just don't know about these DAAs and their sides, but just think what info will be available in the next 5 years! FT
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:)I got my blood test results today and after 4 weeks and very little side effects my VL has gone from 875,000 to NOT DETECTED, great news is all I can say ALT & AST are nearly within normal and were very high prior to Harvoni, still 8 weeks to got and fingers crossed.
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Gonzo, that's wonderful!
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Congratulations Gonzo!!!
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Awesome news Gonzo!
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Great news, Gonza and keep up the fight! FT
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Your going pretty well yourself mate, keep up the good work.
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I am 61 years old. Blood transfusion in 1974 and one in 1985. not sure which one gave me hep c. I am on day 2 of taking Harvoni. But I am having side effects that have me a little upset. Headache, nausea, fatigue, panic attack, and a fear of the side effects the drug may continue to have after taking. I have genotype 1 and this is my first attempt at treatment. Need moral support so I don't go nuts. Also I am not very computer savvy so am not sure how to participate in this news feed and receive replies.....any info would be of help to me
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Hi Morab, quite a few people mention headache and nausea as common side effects. Make sure you drink plenty of water! That often reduces the headache impact. Nausea - well you might find that settles after a few days. Try and isolate whatever you think may be causing you to feel icky. For me, it was acidic foods.
Most people with side effects find they diminish as soon as as treatment ends. Of course there will always be outliers - people who fall outside the statistical range and for whom sx may continue longer than usual, but for most people they don't.
Remember, there are tens of thousands of people worldwide out there taking these drugs successfully. The problems you hear about are generally small in number. I'm not diminishing the effect of sx on the people who get them, but not everyone gets them.
I always found it was best for me to keep myself busy so I didn't have a chance to focus on sx.
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Hi Morab and welcome!
You'll be right, just post your messages like you have this one, get the computer to remember your username and password so you can log on easily, and when you do, have a look for any replies. You'll get the hang of it. Your side effects might pass, don't be too worried about them. Do you have people around you who know that you are on the treatment, and who might want to go for a walk with you regularly, or something like that? Regular exercise is good for any possible side effects too, and nice to combine it with some social time.
Best wishes,
Hazel
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Hi Morab,
I am on my 5th week of harvoni and I just can't believe how fast the time is going. I had mild side effects off and on for the first few weeks, but overall I can't complain. What time do you take your med? My doctor told me to take it with a meal as I was concerned about nausea too. I take it right after dinner and so far I have only had one upset stomach. I was paranoid that I might get sick, but a glass of ginger ale did the trick. The water is so important to keep the headaches away. Good luck and I think everyday you will feel a bit better!! Brie
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Morab, there is an option in your profile settings that allows you to receive an e-mail notification every time someone replies to a thread that you post in. That helps keep track of when people reply to your posts!
I had a weird assortment of side effects for the first couple of weeks too, including terrible insomnia. Most of the side effects were just.... I dunno... more weird than annoying, because I just wasn't used to feeling them. The insomnia was bad, though - I was only getting 2 or 3 hours of sleep a night, and at one point, I went over 40 hours without sleep before I finally broke down and got some Ambien. That was, like, Day 6 I think. But at any rate, I just started Day 29 today, and every side effect has been gone for quite a while. They were all over within a couple of weeks, and now all I feel is.... healthy. Extremely healthy.
Hang in there, bro - it gets better, and usually doesn't take long at all to get there.
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Hi Morab and welcome to the Harvoni train! I just started my 3rd and last bottle of Harvoni today. I totally understand your hesitation/fears/concerns w/ this new drug -- we all probably had some reservations before taking that first pill, be it Harvoni or Viekira or Daklinza or Zepatier, due to the "unknown". It was scary for me!! However, my course, so far, has been extremely uneventful, w/better cognitive clarity and more energy, a very nice surprise. Give it some time. All of us are different, the majority breeze thru this and others have some sides. Just try to take it as it comes and focus on getting to the other side, the side of SVR. Consult your doctor, too, to see if he/she has some suggestions to help you get thru this very important treatment course.
Give it some time and hopefully this will get easier for you to tolerate..... or even enjoy. Don't hesitate to use this forum, there is lots of support, great information and a unique understanding of what you're going thru. Hang in there!! FT
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Thanks to all of you. I have no idea how to actually use this site, hopefully I can learn, headed to bed with a brain fog, on day 3 and feeling really low, symptoms almost unbearable
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Morab, give your doctor a call tomorrow and let them know how you're feeling. They will hopefully have some suggestions for you. FT
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side effects were much better for day 3. Thanks to all for your advice. Eating and drinking more yesterday so I am hoping for smooth sailing from here on out and less side effects. Is anyone having side effects that continue after the drug completion is done? Thanks for any advice
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So I can start eating cake, cookies, and pie to gain wait so I will feel better. ;0
I do like this forum.
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One thing I am certain of with this Harvoni treatment it is certainly different to the two others I tried in 1997 and 2013, I am eating like a horse so obviously there is no weight loss. Still getting a few mild side effects but nothing at all that I cannot handle with eaz. Very easy train ride this one, not like the other train wrecks I was on.
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I had very strange side effects after taking my 2nd dose of Sovaldi/Daklinza. It seemed to be an allergic reaction where my lungs became filled with fluid and I kept coughing, along with some other symptoms. Very similar to when I feel the Epstein-Barr virus has activated, though i do wonder now if what I thought was Epstein-Barr is actually an allergy.
I ate some grapes, and read today that this can increase the levels of Daklinza too much, and increase symptoms...so maybe this is what happened. I just pray I am not allergic to Daklinza. There is a laundry list of excipients added to both Daklinza & Sovaldi, and I do wonder about allergic reactions to these ingredients too.
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Hi Luna. I have read that grapes are very high in naturally occurring sulfties and some people are allergic to grapes for that reason. Some of us experienced heightened allergic reactions of one sort or another while on treatment. My body reacted to each mosquito bite as though it was a wasp sting while I was on treatment - in terms of pain, swelling, and longevity of the injury. Normally a mosquito bite would be nothing to me. So I seemed to have a heightened histamine response.
Perhaps you are reacting to the sulfites in grapes in a heightened way?
kim
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Bingo, that seems to be it, Kim. Thanks!
I had no idea that grapes have naturally occurring sulfites, and I am allergic to sulfites, though it is usually minor. I can get away with a few dried apricots/figs that are preserved that way, but a sulfite-laden salad bar will make me quite ill.
Some years back, when I first discovered the HCV, I tried to go a more natural route. Since my C-reactive protein was so high they tested to see if I might be having a response to some foods. It appears that everyone has a bit of inflammation when they eat food, to a more/less degree, and I definitely had the higher markings for some fruits.
This Bai water I consumed that morning, along with a bit of fruit juice containing grapes also had 'natural flavors'...and who knows what that might mean! Anyway, I will be minimizing fruit from now on, as well as 'natural flavors' and other chemicals.
Interesting to ponder just why the histamine response is heightened for some. But the reaction, like with the mosquito bite, is gone for you post treatment?
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Interesting to ponder just why the histamine response is heightened for some. But the reaction, like with the mosquito bite, is gone for you post treatment?
I haven't encountered any mosquitoes since finishing treatment in late July last year. We are coming up on mosquito season again, so we shall see what my body does with the first mosquito bite. But I think my body has gone back to normal in that regard. Other things have gone back to normal. For example, I had a super-heightened taste of sweet and salty during treatment - so much so that I really couldn't eat fruit (too sweet) or cheese (too salty). They just tasted disgusting to me during treatment. But that went away post-treatment, thanks goodness! I love fruit and cheeses.
kim :)
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Well l am hoping that something totally different went wrong today, l had a shocker of a day that started about two hours after my Harvoni tablet at 6.30am this morning, l have never been so tired and feeling so worn out, this is the first little hikup while on this treatment and hopefully the last, Every day l have been getting out early in the morning and riding 30 Kim's on my push bike and feeling fairly energetic, so hopefully tomorrow it turns around and back to how l was traveling at week 6 of 12. Funny part is l had the best sleep the night before.... Fingers crossed for the next 6 weeks.
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OK l didn't have any of the symtoms that l experienced yesterday thank god, normal sort of day only a few head aches which is quite exceptable, pretty happy again.
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Hi Gonzo,
Glad to hear you are feeling better. It is so strange how side effects come and go. I was having pain around my liver the last few days and dealing with some fatigue the other day too. I am undetected, so not going to worry about it. Overall I feel really good most days. Hang in there! Brie
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Thanks Brie41 l havo NO intentions of giving in at all, this is a breeze compaired to what the two other treatments put me through somevyears ago.
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Hi Gonzo, glad to hear things are leveling out. I am 9.5 wks into my Harvoni, and yes, most days are uneventful, but then some have fatigue, feeling "off", mild fleeting HA, and/or some liver discomfort........ who knows why! I inquired to my doctor about these yesterday and there was no concrete answer. I guess as long as they are infrequent, it's par for the course. These are powerful drugs despite feeling like nothing for the most part. Keep up the fight, FT
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Hi FT,
I have been having some liver discomfort the last few weeks too. Only a few times, but it just surprised me for some reason. I am now worried again that you said the hcv can hide in the liver cells. I hope for all of us on 8 weeks that won't be the case. I keep wondering why they don't test for resistance before starting therapy. I would think it only makes sense, but what do I know. Fingers crossed!! Brie
Hi Gonzo,
I really can't imagine going through the other treatment once never mind twice. I was lucky I had time to wait, but never did I think we would be able to cure ourselves so easily. Hope you feel better everyday!!!
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Brie41, my understanding is that it's not necessarily "hiding" in the liver cells, I believe it originates there and finds it's way into our bloodstream, like the liver enzymes do. They leak into the bloodstream when there is a liver problem. The research is showing good results with 8 wk treatments, so don't worry! Some of the new research is showing even lower times, so they are still figuring this all out. My doctor chose 12 wks due to VL fluctuating all over the place -- they don't yet understand that yet fully, either. They have enough evidence to get Harvoni approved for 8 + weeks at this point, but who knows what the treatment times will be in the near future? Think positive thoughts! FT
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Brie41 - One thing that I think happens is that when we had hep C and had sensations in the liver, we just naturally correlated the two. Now I know that the liver, just like all other organs, may give us feedback that has absolutely nothing to do with anything. Those who don't have hep C don't seem to notice it, since it probably occurred much less often and because they had nothing to be afraid of. But we have been conditioned, like Pavlov's dogs, to notice and wonder about things going on in our bodies, especially if it feels just like it did when we had hep C. But one thing we know about hep C is that it doesn't lurk - it either replicates or it doesn't. When you get that SVR, unless you are re-exposed, you can safely assume that hep C is gone (with rare exceptions that are so rare, not worth mentioning). It takes us awhile to really believe it. Personally, I'd be wondering too - not just because of the liver pain, but because wondering is a natural part of the process.