Every day is a little different, especially in the first few weeks. That's good news about some lift in brain fog. Who doesn't want that?! It sounds like you've got this and are making progress.
Funny, with anxiety, how the mind makes a mountain out of a molehill only to be followed by a less dramatic outcome. I'm glad it's not turning out to be as bad you thought it might.
Just hang in there, rolling with the punches. It seems like along time, until it's over. Over time, this will be just one well earned chapter.
All the best to you.
Cheddy
5-1-18 said
Jan 21, 2019
hi Lil', good to hear from you today
Hoodietree said
Jan 21, 2019
Hey lil, way to go! Good job keeping up with the ins and outs of being on treatment. Glad to hear your brain fog is lifting, that is wonderful. For 12 weeks I took my pill at 7:30PM so that I would sleep through the worst of the effects. That worked well for me, and I think youre wise to move your pill time to 8pm or just before bedtime. Nice that you only have to do 8 weeks! It will fly by. Keep up the good work
Tig said
Jan 21, 2019
lilbrownie wrote:
All in all, so far it has not been bad. Except for a few days, I cannot feel any effects of the meds, period. I hope that holds true for the remainder of the time, but like Canuck pointed out, its a roller coaster (for ME) and I will take it as it comes.
One wonderful thing I have noticed in the last few days, even when I was physically tired, my mind seems clearer. The brain fog is lifting, and for that I am joyful. I took SO many supplements over the years to combat the dull fog I walked around with, and although some did help, this is the clearest I've been in years. Not sure if this has to do with my HepC clearing or my heart rate and blood pressure not being dragged down by my beta blocker, but I'll take it!
Sounds a lot like others that have traveled this journey before you. I like your expectation that you will get to feeling better, and you will. I would say both of your recent changes are responsible for your differences in cognition and clarity. Certainly the beta blockers are going to act that way. The way your heart and vessels react to any of the blockers is sure to affect you. I see great things ahead! Stay adequately hydrated, that's most important now. If you're not drinking AT LEAST 3-4 liters per day, try harder! Trust me, it's worth all the effort you're putting in now.
lilbrownie said
Jan 21, 2019
Canuck wrote:
Hi Lillb,
Some of us on trials have been lucky enough to have had frequent bloods drawn for VLs, and ALTs, can we get to see these big drops for ourselves. Some of us have seen our VL's plummet at week 1 of treatment. And other trial studies have shown how quickly (often within days/weeks of therapy start) the VL does crash. A crash beginning at day 3 was the shortest I have read about in studies.
I did not notice prior the addition to your sig llne info until yesterday... " Harvoni 8 weeks - 12 weeks approved if required" ... I assume this was something you and your doc discussed right from the beginning? I had inquired before about what date(s) they plan on doing VL's on you, within the 8 week course (aside from the 4 week VL draw we know is planned). Did you get confirmation about what the date should be for an early 8 week EOT VL draw? Depending on and following the results of your first 4 week VL draw, and if you are going in for a 4 week visit to the doc, then at that time you could firm up with the doc what your next VL testing date should be (if a 2nd draw date has not already been decided on).
You sound as though you are riding these Harvoni waves very well indeed. I sometimes visualized being bobbed along, being moved, immersed and cradled in a sea of cure. : ) C.
Canuck you got me thinking here, on the "12 Weeks approved if required. I called to clarify what this meant, and I was told my insurance company approved me up through April 12. My treatment ends on March 5. Way before that. The reason they approved it that way was in case I had any delays in START of treatment. NOT to EXTEND treatment if I don't respond. Glad you brought that up so it would not confuse anyone who is just starting. I will edit my signature immediately.
Okay, so the "wired "feeling lasted two days, and on the third day, I kinda crashed, laying around all Saturday, in a weird, tired but unable to sleep state. That night, I slept really well, waking yesterday just feeling normal. The wired feeling is gone for now and so is the fatigue for the most part. It catches up with me if I overdo things, which I do a lot, but it's not bad most times.
I did have a small epiphany on my "wired "feeling, it may not be completely the Harvoni causing it. As I mentioned my Primary Care Doc had lowered my Beta Blocker for the duration of the treatment. For a long time I have been wishing he would do this, as it was not only slowing my heart rate and controlling my PVCs and PACs, it was causing my blood pressure to be SO low. I used to scare the nurses when I would go in for visits early in the morning after I had taken my blocker because it was that low. Last blood pressure reading I had, since I had the dosage lowered was 110/72, I was THRILLED. This could be contributing to my increased energy.
You were right, it was a bit of a roller coaster last two weeks. I see my doctor next week for a blood draw, and they will be calling the pharmacy for my next box. ( I cannot believe I am saying that already!)
After that, I go in for another round of tests exactly 4 weeks later, and they will monitor me until 6 months ( I think that is what they told me, I'll ask again next visit)
All in all, so far it has not been bad. Except for a few days, I cannot feel any effects of the meds, period. I hope that holds true for the remainder of the time, but like Canuck pointed out, its a roller coaster (for ME) and I will take it as it comes.
One wonderful thing I have noticed in the last few days, even when I was physically tired, my mind seems clearer. The brain fog is lifting, and for that I am joyful. I took SO many supplements over the years to combat the dull fog I walked around with, and although some did help, this is the clearest I've been in years. Not sure if this has to do with my HepC clearing or my heart rate and blood pressure not being dragged down by my beta blocker, but I'll take it!
SeeTheLight said
Jan 18, 2019
Hi Lil glad to hear your journey is well on the way, and going pretty good by the sounds of it. Keep up the good work. That Dragon Spawn is now well and truly leaving the building.
5-1-18 said
Jan 18, 2019
for sure, your liver is a few thou virus lighter and the newer ones are not replicating.... so they are just about outta there.
not only do the old ones die but now none of them that are left can reproduce becos of the DAA action on the rna of the virus
bug spray and birth control all in one
Canuck said
Jan 18, 2019
Hi Lillb,
Ah, the harvoni "high"! Others on Harvoni have described kind of what you did about a time of feeling wired (I think people can feel like that on other DAA's too) but this is not to leave out some feelings of fatigue, that we see can happens too (for some of us)! i had the most curious mix of both when i was on vosevi, but for me the fatigue was the overriding. 5 describes it well, that you never know if you will feel anything much at all or if you could (might) get a "roller coaster ride" mix of things - we always hope for nothing too noticable. The good thing is that the things you think you might be feeling now could well ebb/dissipate quickly.
You said ... " Maybe my body is already a few hundred thousand viruses less, and feeling it. Hope so. " ...
I agree, that your VL has probably decreased by now - with this many days of Harvoni under your belt now your VL number has probably been decimated. Likely your VL number started to be decimated within days, I personally guess these bouts of the "runs" actually may herald very good (viral death) news and marks a big internal event of DAA's hard at work. Very significant and telling crashes of VL's and ALT's can start to happen within days of being on therapy (often at least by week 4). We complete the DAA course to seal the kill.
Some of us on trials have been lucky enough to have had frequent bloods drawn for VLs, and ALTs, can we get to see these big drops for ourselves. Some of us have seen our VL's plummet at week 1 of treatment. And other trial studies have shown how quickly (often within days/weeks of therapy start) the VL does crash. A crash beginning at day 3 was the shortest I have read about in studies.
I did not notice prior the addition to your sig llne info until yesterday... " Harvoni 8 weeks - 12 weeks approved if required" ... I assume this was something you and your doc discussed right from the beginning? I had inquired before about what date(s) they plan on doing VL's on you, within the 8 week course (aside from the 4 week VL draw we know is planned). Did you get confirmation about what the date should be for an early 8 week EOT VL draw? Depending on and following the results of your first 4 week VL draw, and if you are going in for a 4 week visit to the doc, then at that time you could firm up with the doc what your next VL testing date should be (if a 2nd draw date has not already been decided on).
You sound as though you are riding these Harvoni waves very well indeed. I sometimes visualized being bobbed along, being moved, immersed and cradled in a sea of cure. : ) C.
lilbrownie said
Jan 18, 2019
5-1-18 wrote:
lil, my hubby was wired the entire time after he took his pill, he is retired so could sleep anytime.
i had to move my pill back a few hrs at a time till i got to my best time.
not everyone reacts the same re: sleep and energy.
hang in there, you are getting cured; you may have a roller coaster ride but at the end of tx you will be CURED.
i'm glad you came here to post; this place saw me thru all the weird experiences i encounter whilt OT.
let us know how this turns out for yu
Phew , good to know about your hubby!
I ended up falling asleep at around 2:30 AM, slept like a baby once I did fall asleep. Got up at 6:00 AM to get hubby off to work and went back to bed for a couple of hours. I woke up feeling normal, not wired like I was yesterday. I didn't mind it too much, as it was not a manic kind of wired, more of a "one too many cups of expresso wired" It just kinda threw me to see myself go from fatigue one day to wired the next ! The upside is my house is spotless for the weekend :lol:
Maybe my body is already a few hundred thousand viruses less, and feeling it. Hope so.
5-1-18 said
Jan 18, 2019
lil, my hubby was wired the entire time after he took his pill, he is retired so could sleep anytime.
i had to move my pill back a few hrs at a time till i got to my best time.
not everyone reacts the same re: sleep and energy.
hang in there, you are getting cured; you may have a roller coaster ride but at the end of tx you will be CURED.
i'm glad you came here to post; this place saw me thru all the weird experiences i encounter whilt OT.
let us know how this turns out for yu
lilbrownie said
Jan 18, 2019
Okay , so...kind of a strange update. At 1:00AM!
I should be asleep!
Today I woke up with a LOT of energy.
I mean a LOT. I did more today, than I have in weeks. I'll talk more about it later, as I'm doing this on my phone and no glasses on , so posting is kinda hard. I think I edited a reply I just posted to another persons thread 3 times, dang tiny phone keyboard :groan:
Gonna try to sleep, what an odd turn of events!
Canuck said
Jan 16, 2019
Hey Karyl - HI! : )
Hi Lillb,
Back to you. : )
About "the runs", we have had more than a few folk around here note the same event, seems to be a therapy related event (I am guessing) when there is no evidence to the contrary (no other explanation such as pre-existing sensitive gut hx, a stomache flu or bug or something-bad-one-ate reason surfaces) - personally, I do think when the DAA drugs start in on their initial work we can exhibit GI signs, just such as these runs (but i think most often these runs are VERY short-lived bouts). Some folk notice nothing that way. I always think of Lamont at times like these, him riding along on his motorcycle when the runs hit him, looking at bushes as he speeds by trying to get to that nice Costco washroom in a hurry.
You can read until you are blue in the face the "side" drug monographs and reports, and they do not really indicate very well how many and what kind of "GI" experiences a person may or may not get - just known we have had a few folk here just like you, who experienced the runs as well. I do not recall any of our folk who had "ongoing" trouble with this, it seemed always to be a transitory "passing" thing! You did the right things anyway, with your water drinking and electrolytes.
About moving the dose time (sounds like a plan) IF that is what you think you should do (what I have heard is never moving it more quickly than by a one hr increment per day). I don't recall what time of today you were taking your dose before (just that you had been taking it in the "evening"), so, if you change the dose to be taken at 7PM or at 8PM, how many hours are you adding?? - what time of "the evening" were you taking it before?
In moving the dose time, another consideration would be it's timing to a meal - I was just saying to someone else, i would always opt to take meds "with a meal" when there is any choice. I would be striving to take the drug with a meal, at the same time everyday.
Good informative thread you are writing. : ) C.
Karyl said
Jan 16, 2019
Welcome. I'm 65 and also have panic disorder. Don't worry. The Harvoni won't be mean to you. I finished my 8 week treatment with little side effects, just woozy the first week then a few headaches and the fatigue. That's all. The weeks will fly by and soon you'll be rid of that pesky virus.
lilbrownie said
Jan 16, 2019
5-1-18 wrote:
hi lil, it sounds like you are getting your routine down. awesome.
i didn't feel anything for 2 weeks, then a few sides hit me and i was so disappointed. i felt sad that i had to rest more and just let the medicine do it's job rather than lead a more active lifestyle.
we are here if you decide you have something to talk about more than once a week; but i'm so glad you posted today
5
Oh 5, you hit it on the head there! I find that being active is the best way to handle my anxiety, it seems that when Im moving, my brain has less room for the constant noise of worry. Besides that, I'm a bit hard on myself since I retired, thinking I have to find other ways to stay relevant and productive.
That being said, the treatment has forced me to slow wayyyy down. It actually feels kind of good to give myself permission to just ....rest.
lilbrownie said
Jan 16, 2019
Observer wrote:
I was on twice a day treatment and had to accomodate the daylight savings time change, so I moved my pill times in small increments.
Thanks Observer and all the kind souls here who are so supportive.
Actually, my dear hero of a husband was expressing concerns over me moving my dosing time, my doctor was very stern about me taking the pill at the same time every day. I scoured the Giliad website and others and found its okay to move it in the way you described. I plan to do it in 30 minute increments.
Just a bit more, to maybe 7:00 pm should be good.
.
Tig said
Jan 16, 2019
Thanks for the update, Lil. Sounds like you have things firmly under control and that alone will make your journey much smoother. The first few weeks are an adjustment period for most people starting these DAA’s. As long as you continue to be proactive with the issues you’re having in the beginning, the remainder will go by much smoother!
Observer said
Jan 16, 2019
Really nicely written discription Lil...
you are really tuned in to your body and on top of developing good on treatment lifestyle.
I was on twice a day treatment and had to accomodate the daylight savings time change, so I moved my pill times in small increments.
when I got headaches on treatment , I found that drinking extra water usually sorted them, but I do remember one or two times when I needed pain relief.
Looking forward to next weeks update
5-1-18 said
Jan 15, 2019
hi lil, it sounds like you are getting your routine down. awesome.
i didn't feel anything for 2 weeks, then a few sides hit me and i was so disappointed. i felt sad that i had to rest more and just let the medicine do it's job rather than lead a more active lifestyle.
we are here if you decide you have something to talk about more than once a week; but i'm so glad you posted today
5
lilbrownie said
Jan 15, 2019
Hi everyone, I decided early on to post updates one week at a time, this is day seven of my Harvoni journey.
First of all, for anyone who is not familiar with me, I posted in the Newcomers thread back a while ago. There, I gave background on my history with HepC, and my issues with panic disorder, and general anxiety issues, so I won't go into that again ;)
This is the meds and supplements I take in case anyone is curious:
Beta blocker for PVCs and PACs, NOTE: MY primary care physician decided to lower my dosage on this for the duration of treatment just as a precaution. So far, I have noticed no difference, with the exception of one night when the PVCs got really annoying at bedtime. This, however, was very early in my treatment (I think Day 2 or 3, so my anxiety was still pretty high, and I had breakthrough PVCS even at the higher dose when I was particularly anxious.
I have been prescribed Xanax for panic attacks and when my anxiety becomes uncontrollable. I am only given a certain amount a year and am very careful never to abuse it. I take the lowest dose and have done so for 4 years. It has changed my life, as I was increasingly fearful of leaving my house because of the unpredictable nature of panic attacks. I used the Xanax on the first few days, but have not needed it since'
The only supplements I am comfortable taking right now is a multivitamin every other day, with a B complex on alternate days. I take fish oil as well for my joints every few days and B12 every day on the advice of my doctor since I do not like meat and eat very little of it. I stopped my magnesium for now, choosing to eat high magnesium content foods instead.
What is funny and surprising is...it was hard for me to put my supplements away for this time! Since I was diagnosed, and having to live with HepC, I became almost obsessed with supplements and eating healthy. In the early years, I spent hundreds of dollars on all kinds of stuff to help my liver. Over the years, I backed off, but still have some staples I really loved taking, because I really did feel the difference in my well being. I pretty much put them all away except the few I mentioned.
The first day, I was a mess. It was almost like I EXPECTED side effects. The second day....again nervous, but curiously I was feeling fine physically. It might as well have been a placebo, I felt nothing different except what my anxiety was giving me.
Every day that passed, I relaxed more. I actually felt nothing from the Harvoni. AT ALL, Until...
The fifth day, the fatigue hit me like a ton of bricks, about two hours before and two hours after I took my pill. Luckily I chose to take it in the evening so It didn't affect my day much. In fact, I had not slept that good in a long time . I would wake up refreshed, feeling nothing until about 3:00 PM, then I would fade. Also on day five, I got a bout of awful diarrhea, but it cleared up quickly in a few hours. I mixed Gatorade with my water during that time, and have had no more issues with my gut since.
Yesterday the fatigue didn't happen as drastically as it had the day before, even after a really busy day, but it was still there. I am thinking of actually pushing my dose back by a bit every day until I get to about 8:00 PM if this doesnt clear up soon.
I have had one headache this week that got close to pounding. and for the first time in a LONG time, I took an extra strength Tylenol. I was reading on the Harvoni website and they suggest NSAIDs such as Advil and Aleve are not suggested because they may cause rebound headaches. Luckily my husband had some Tylenol and took one 500 mg pill and went back to bed, in one hour the headache was gone and has not returned.
All in all this last week was kinda of anti-climactic from what I made it out to be in my head. I am cautiously optimistic and will update next week.
OH, I was to say one thing...the water drinking thing haha, has been a challenge, so I figured out a way that it works for me. I fill up my bottles in the morning, and I set a timer. I put 8OZ in a glass and by the time the timer goes off it has to be empty... I found guzzling from my water bottles had me drinking too much at one time, make it so I was constantly running to pee. This way, my body seems to be able to absorb more, and I pee less, but when I do it is nice and clear. Oh, I stop all water two hours before bed, the day before I did this, I was up SEVEN times peeing. That was just not gonna work for me lol.
See you all next week
Tig said
Jan 9, 2019
Well done, LilB! I like your strength and positive message. I have every reason the believe you are going to slay more than one Dragon with this treatment. You started by believing in yourself and the good that these new medications will deliver. This is your time to shine and you’ll do it!
5-1-18 said
Jan 9, 2019
congrats LilB
i take 1mg valium before bed if i have to work the next day. i get good sleep and that makes my work nite better for me.
i love that my doctor put me on them 10yrs. ago. , my dose has remained consistent and gives me better quality of life.
i needed 2mg during the harvoni but went back down to 1mg soon after eot.
your body will let you know.
i carried hcv for about 36yrs and going thru treatment was soooooo worth it.
5
Annie said
Jan 9, 2019
Congratulation Lil!! I too have had this dragon in my body for probably over 40 years and have dealt with anxiety and panic. I have wanted so many times to quit Lorazepam but I think it might be what gets me through my treatment too. Then we'll see. I can only hope this disease has been contributing to the anxiety issues and fatigue.
I'll be following your journey and praying for you. Hopefully I won't be far behind you. We've got this!
Ashenvale said
Jan 9, 2019
Well done LilB, the first battle won, such an important step on your path to becoming hep-free - keep going!
Observer said
Jan 9, 2019
Congratulations on making friends with that marvellous medicine and getting started on your dragon slaying.
Long term HCV wreaked havoc on my nervous system, heres hoping your anxiety will become less of a burden to your life when you rid yourself of the hep c.
Cheddy said
Jan 8, 2019
Good on you LilB! Not only are you getting started on a major and new found cure, you are facing your fears, big time. Sometimes the intruders are in our livers, and sometimes they are in our heads! You've just made some excellent choices. Chalk one up for LilB.
Canuck said
Jan 8, 2019
Hey lilB,
Congrats on your start - Day One! yay! I did post you back on your prior thread "New here ..." - you are sounding strong! Good going. : ) C.
lilbrownie said
Jan 8, 2019
First of all, from those who have read my "New Member " introduction post, I have carried this virus around for a long time. I have suffered Panic Disorder for years, and the general anxiety that comes with it. It sucks, and I kind of wondered all these years, how much the HepC contributed...Oh, and I have a drug phobia.
I was in the midst of a horrid panic attack when I first got my Xanax prescription. I stared at it for 30 mins before I got the nerve to take it. The relief I felt when the medication set in, was something I will not soon forget. My therapist thinks it is because I abused pills in my youth and I associate it with all the bad things in my life. She told me I had to rewrite the narrative I had about drugs. The Xanax is medicine for me, as the Harvoni is. Any medication I take, I have to become friends with.
That being said, starting the process of beginning treatment was stressful, to say the least. I had a panic attack when I received the pill bottle. I took a deep breath and just ripped the band-aid off. I swallowed the magic medicine with a prayer, knowing my Xanax was there in case I could not control the panic.
So here I begin my journey to be rid of these intruders in my body, thanks to this little orange pill. It's going to be interesting how much water I can shove into my body, but I have my Nalgene bottles filled and ready, and I'm hoping on the Harvoni train.
Hi LilB
Every day is a little different, especially in the first few weeks. That's good news about some lift in brain fog. Who doesn't want that?! It sounds like you've got this and are making progress.
Funny, with anxiety, how the mind makes a mountain out of a molehill only to be followed by a less dramatic outcome. I'm glad it's not turning out to be as bad you thought it might.
Just hang in there, rolling with the punches. It seems like along time, until it's over. Over time, this will be just one well earned chapter.
All the best to you.
Cheddy
hi Lil', good to hear from you today
Hey lil, way to go! Good job keeping up with the ins and outs of being on treatment. Glad to hear your brain fog is lifting, that is wonderful. For 12 weeks I took my pill at 7:30PM so that I would sleep through the worst of the effects. That worked well for me, and I think youre wise to move your pill time to 8pm or just before bedtime. Nice that you only have to do 8 weeks! It will fly by. Keep up the good work
Sounds a lot like others that have traveled this journey before you. I like your expectation that you will get to feeling better, and you will. I would say both of your recent changes are responsible for your differences in cognition and clarity. Certainly the beta blockers are going to act that way. The way your heart and vessels react to any of the blockers is sure to affect you. I see great things ahead! Stay adequately hydrated, that's most important now. If you're not drinking AT LEAST 3-4 liters per day, try harder! Trust me, it's worth all the effort you're putting in now.
Canuck you got me thinking here, on the "12 Weeks approved if required. I called to clarify what this meant, and I was told my insurance company approved me up through April 12. My treatment ends on March 5. Way before that. The reason they approved it that way was in case I had any delays in START of treatment. NOT to EXTEND treatment if I don't respond. Glad you brought that up so it would not confuse anyone who is just starting. I will edit my signature immediately.
Okay, so the "wired "feeling lasted two days, and on the third day, I kinda crashed, laying around all Saturday, in a weird, tired but unable to sleep state. That night, I slept really well, waking yesterday just feeling normal. The wired feeling is gone for now and so is the fatigue for the most part. It catches up with me if I overdo things, which I do a lot, but it's not bad most times.
I did have a small epiphany on my "wired "feeling, it may not be completely the Harvoni causing it. As I mentioned my Primary Care Doc had lowered my Beta Blocker for the duration of the treatment. For a long time I have been wishing he would do this, as it was not only slowing my heart rate and controlling my PVCs and PACs, it was causing my blood pressure to be SO low. I used to scare the nurses when I would go in for visits early in the morning after I had taken my blocker because it was that low. Last blood pressure reading I had, since I had the dosage lowered was 110/72, I was THRILLED. This could be contributing to my increased energy.
You were right, it was a bit of a roller coaster last two weeks. I see my doctor next week for a blood draw, and they will be calling the pharmacy for my next box. ( I cannot believe I am saying that already!)
After that, I go in for another round of tests exactly 4 weeks later, and they will monitor me until 6 months ( I think that is what they told me, I'll ask again next visit)
All in all, so far it has not been bad. Except for a few days, I cannot feel any effects of the meds, period. I hope that holds true for the remainder of the time, but like Canuck pointed out, its a roller coaster (for ME) and I will take it as it comes.
One wonderful thing I have noticed in the last few days, even when I was physically tired, my mind seems clearer. The brain fog is lifting, and for that I am joyful. I took SO many supplements over the years to combat the dull fog I walked around with, and although some did help, this is the clearest I've been in years. Not sure if this has to do with my HepC clearing or my heart rate and blood pressure not being dragged down by my beta blocker, but I'll take it!
Hi Lil glad to hear your journey is well on the way, and going pretty good by the sounds of it. Keep up the good work. That Dragon Spawn is now well and truly leaving the building.
for sure, your liver is a few thou virus lighter and the newer ones are not replicating.... so they are just about outta there.
not only do the old ones die but now none of them that are left can reproduce becos of the DAA action on the rna of the virus
bug spray and birth control all in one
Hi Lillb,
Ah, the harvoni "high"! Others on Harvoni have described kind of what you did about a time of feeling wired (I think people can feel like that on other DAA's too) but this is not to leave out some feelings of fatigue, that we see can happens too (for some of us)! i had the most curious mix of both when i was on vosevi, but for me the fatigue was the overriding. 5 describes it well, that you never know if you will feel anything much at all or if you could (might) get a "roller coaster ride" mix of things - we always hope for nothing too noticable. The good thing is that the things you think you might be feeling now could well ebb/dissipate quickly.
You said ... " Maybe my body is already a few hundred thousand viruses less, and feeling it. Hope so. " ...
I agree, that your VL has probably decreased by now - with this many days of Harvoni under your belt now your VL number has probably been decimated. Likely your VL number started to be decimated within days, I personally guess these bouts of the "runs" actually may herald very good (viral death) news and marks a big internal event of DAA's hard at work. Very significant and telling crashes of VL's and ALT's can start to happen within days of being on therapy (often at least by week 4). We complete the DAA course to seal the kill.
Some of us on trials have been lucky enough to have had frequent bloods drawn for VLs, and ALTs, can we get to see these big drops for ourselves. Some of us have seen our VL's plummet at week 1 of treatment. And other trial studies have shown how quickly (often within days/weeks of therapy start) the VL does crash. A crash beginning at day 3 was the shortest I have read about in studies.
I did not notice prior the addition to your sig llne info until yesterday... " Harvoni 8 weeks - 12 weeks approved if required" ... I assume this was something you and your doc discussed right from the beginning? I had inquired before about what date(s) they plan on doing VL's on you, within the 8 week course (aside from the 4 week VL draw we know is planned). Did you get confirmation about what the date should be for an early 8 week EOT VL draw? Depending on and following the results of your first 4 week VL draw, and if you are going in for a 4 week visit to the doc, then at that time you could firm up with the doc what your next VL testing date should be (if a 2nd draw date has not already been decided on).
You sound as though you are riding these Harvoni waves very well indeed. I sometimes visualized being bobbed along, being moved, immersed and cradled in a sea of cure. : ) C.
Phew , good to know about your hubby!
I ended up falling asleep at around 2:30 AM, slept like a baby once I did fall asleep. Got up at 6:00 AM to get hubby off to work and went back to bed for a couple of hours. I woke up feeling normal, not wired like I was yesterday. I didn't mind it too much, as it was not a manic kind of wired, more of a "one too many cups of expresso wired" It just kinda threw me to see myself go from fatigue one day to wired the next ! The upside is my house is spotless for the weekend :lol:
Maybe my body is already a few hundred thousand viruses less, and feeling it. Hope so.
lil, my hubby was wired the entire time after he took his pill, he is retired so could sleep anytime.
i had to move my pill back a few hrs at a time till i got to my best time.
not everyone reacts the same re: sleep and energy.
hang in there, you are getting cured; you may have a roller coaster ride but at the end of tx you will be CURED.
i'm glad you came here to post; this place saw me thru all the weird experiences i encounter whilt OT.
let us know how this turns out for yu
Hey Karyl - HI! : )
Hi Lillb,
Back to you. : )
About "the runs", we have had more than a few folk around here note the same event, seems to be a therapy related event (I am guessing) when there is no evidence to the contrary (no other explanation such as pre-existing sensitive gut hx, a stomache flu or bug or something-bad-one-ate reason surfaces) - personally, I do think when the DAA drugs start in on their initial work we can exhibit GI signs, just such as these runs (but i think most often these runs are VERY short-lived bouts). Some folk notice nothing that way. I always think of Lamont at times like these, him riding along on his motorcycle when the runs hit him, looking at bushes as he speeds by trying to get to that nice Costco washroom in a hurry.
You can read until you are blue in the face the "side" drug monographs and reports, and they do not really indicate very well how many and what kind of "GI" experiences a person may or may not get - just known we have had a few folk here just like you, who experienced the runs as well. I do not recall any of our folk who had "ongoing" trouble with this, it seemed always to be a transitory "passing" thing! You did the right things anyway, with your water drinking and electrolytes.
About moving the dose time (sounds like a plan) IF that is what you think you should do (what I have heard is never moving it more quickly than by a one hr increment per day). I don't recall what time of today you were taking your dose before (just that you had been taking it in the "evening"), so, if you change the dose to be taken at 7PM or at 8PM, how many hours are you adding?? - what time of "the evening" were you taking it before?
In moving the dose time, another consideration would be it's timing to a meal - I was just saying to someone else, i would always opt to take meds "with a meal" when there is any choice. I would be striving to take the drug with a meal, at the same time everyday.
Good informative thread you are writing. : ) C.
Welcome. I'm 65 and also have panic disorder. Don't worry. The Harvoni won't be mean to you. I finished my 8 week treatment with little side effects, just woozy the first week then a few headaches and the fatigue. That's all. The weeks will fly by and soon you'll be rid of that pesky virus.
Oh 5, you hit it on the head there! I find that being active is the best way to handle my anxiety, it seems that when Im moving, my brain has less room for the constant noise of worry. Besides that, I'm a bit hard on myself since I retired, thinking I have to find other ways to stay relevant and productive.
That being said, the treatment has forced me to slow wayyyy down. It actually feels kind of good to give myself permission to just ....rest.
Thanks Observer and all the kind souls here who are so supportive.
Actually, my dear hero of a husband was expressing concerns over me moving my dosing time, my doctor was very stern about me taking the pill at the same time every day. I scoured the Giliad website and others and found its okay to move it in the way you described. I plan to do it in 30 minute increments.
Just a bit more, to maybe 7:00 pm should be good.
.
Thanks for the update, Lil. Sounds like you have things firmly under control and that alone will make your journey much smoother. The first few weeks are an adjustment period for most people starting these DAA’s. As long as you continue to be proactive with the issues you’re having in the beginning, the remainder will go by much smoother!
Really nicely written discription Lil...
you are really tuned in to your body and on top of developing good on treatment lifestyle.
I was on twice a day treatment and had to accomodate the daylight savings time change, so I moved my pill times in small increments.
when I got headaches on treatment , I found that drinking extra water usually sorted them, but I do remember one or two times when I needed pain relief.
Looking forward to next weeks update
hi lil, it sounds like you are getting your routine down. awesome.
i didn't feel anything for 2 weeks, then a few sides hit me and i was so disappointed. i felt sad that i had to rest more and just let the medicine do it's job rather than lead a more active lifestyle.
we are here if you decide you have something to talk about more than once a week; but i'm so glad you posted today
5
Hi everyone, I decided early on to post updates one week at a time, this is day seven of my Harvoni journey.
First of all, for anyone who is not familiar with me, I posted in the Newcomers thread back a while ago. There, I gave background on my history with HepC, and my issues with panic disorder, and general anxiety issues, so I won't go into that again ;)
This is the meds and supplements I take in case anyone is curious:
Beta blocker for PVCs and PACs, NOTE: MY primary care physician decided to lower my dosage on this for the duration of treatment just as a precaution. So far, I have noticed no difference, with the exception of one night when the PVCs got really annoying at bedtime. This, however, was very early in my treatment (I think Day 2 or 3, so my anxiety was still pretty high, and I had breakthrough PVCS even at the higher dose when I was particularly anxious.
I have been prescribed Xanax for panic attacks and when my anxiety becomes uncontrollable. I am only given a certain amount a year and am very careful never to abuse it. I take the lowest dose and have done so for 4 years. It has changed my life, as I was increasingly fearful of leaving my house because of the unpredictable nature of panic attacks. I used the Xanax on the first few days, but have not needed it since'
The only supplements I am comfortable taking right now is a multivitamin every other day, with a B complex on alternate days. I take fish oil as well for my joints every few days and B12 every day on the advice of my doctor since I do not like meat and eat very little of it. I stopped my magnesium for now, choosing to eat high magnesium content foods instead.
What is funny and surprising is...it was hard for me to put my supplements away for this time! Since I was diagnosed, and having to live with HepC, I became almost obsessed with supplements and eating healthy. In the early years, I spent hundreds of dollars on all kinds of stuff to help my liver. Over the years, I backed off, but still have some staples I really loved taking, because I really did feel the difference in my well being. I pretty much put them all away except the few I mentioned.
The first day, I was a mess. It was almost like I EXPECTED side effects. The second day....again nervous, but curiously I was feeling fine physically. It might as well have been a placebo, I felt nothing different except what my anxiety was giving me.
Every day that passed, I relaxed more. I actually felt nothing from the Harvoni. AT ALL, Until...
The fifth day, the fatigue hit me like a ton of bricks, about two hours before and two hours after I took my pill. Luckily I chose to take it in the evening so It didn't affect my day much. In fact, I had not slept that good in a long time . I would wake up refreshed, feeling nothing until about 3:00 PM, then I would fade. Also on day five, I got a bout of awful diarrhea, but it cleared up quickly in a few hours. I mixed Gatorade with my water during that time, and have had no more issues with my gut since.
Yesterday the fatigue didn't happen as drastically as it had the day before, even after a really busy day, but it was still there. I am thinking of actually pushing my dose back by a bit every day until I get to about 8:00 PM if this doesnt clear up soon.
I have had one headache this week that got close to pounding. and for the first time in a LONG time, I took an extra strength Tylenol. I was reading on the Harvoni website and they suggest NSAIDs such as Advil and Aleve are not suggested because they may cause rebound headaches. Luckily my husband had some Tylenol and took one 500 mg pill and went back to bed, in one hour the headache was gone and has not returned.
All in all this last week was kinda of anti-climactic from what I made it out to be in my head. I am cautiously optimistic and will update next week.
OH, I was to say one thing...the water drinking thing haha, has been a challenge, so I figured out a way that it works for me. I fill up my bottles in the morning, and I set a timer. I put 8OZ in a glass and by the time the timer goes off it has to be empty... I found guzzling from my water bottles had me drinking too much at one time, make it so I was constantly running to pee. This way, my body seems to be able to absorb more, and I pee less, but when I do it is nice and clear. Oh, I stop all water two hours before bed, the day before I did this, I was up SEVEN times peeing. That was just not gonna work for me lol.
See you all next week
Well done, LilB! I like your strength and positive message. I have every reason the believe you are going to slay more than one Dragon with this treatment. You started by believing in yourself and the good that these new medications will deliver. This is your time to shine and you’ll do it!
congrats LilB
i take 1mg valium before bed if i have to work the next day. i get good sleep and that makes my work nite better for me.
i love that my doctor put me on them 10yrs. ago. , my dose has remained consistent and gives me better quality of life.
i needed 2mg during the harvoni but went back down to 1mg soon after eot.
your body will let you know.
i carried hcv for about 36yrs and going thru treatment was soooooo worth it.
5
Congratulation Lil!! I too have had this dragon in my body for probably over 40 years and have dealt with anxiety and panic. I have wanted so many times to quit Lorazepam but I think it might be what gets me through my treatment too. Then we'll see. I can only hope this disease has been contributing to the anxiety issues and fatigue.
I'll be following your journey and praying for you. Hopefully I won't be far behind you. We've got this!
Congratulations on making friends with that marvellous medicine and getting started on your dragon slaying.
Long term HCV wreaked havoc on my nervous system, heres hoping your anxiety will become less of a burden to your life when you rid yourself of the hep c.
Good on you LilB! Not only are you getting started on a major and new found cure, you are facing your fears, big time. Sometimes the intruders are in our livers, and sometimes they are in our heads! You've just made some excellent choices. Chalk one up for LilB.
Hey lilB,
Congrats on your start - Day One! yay! I did post you back on your prior thread "New here ..." - you are sounding strong! Good going. : ) C.
First of all, from those who have read my "New Member " introduction post, I have carried this virus around for a long time. I have suffered Panic Disorder for years, and the general anxiety that comes with it. It sucks, and I kind of wondered all these years, how much the HepC contributed...Oh, and I have a drug phobia.
I was in the midst of a horrid panic attack when I first got my Xanax prescription. I stared at it for 30 mins before I got the nerve to take it. The relief I felt when the medication set in, was something I will not soon forget. My therapist thinks it is because I abused pills in my youth and I associate it with all the bad things in my life. She told me I had to rewrite the narrative I had about drugs. The Xanax is medicine for me, as the Harvoni is. Any medication I take, I have to become friends with.
That being said, starting the process of beginning treatment was stressful, to say the least. I had a panic attack when I received the pill bottle. I took a deep breath and just ripped the band-aid off. I swallowed the magic medicine with a prayer, knowing my Xanax was there in case I could not control the panic.
So here I begin my journey to be rid of these intruders in my body, thanks to this little orange pill. It's going to be interesting how much water I can shove into my body, but I have my Nalgene bottles filled and ready, and I'm hoping on the Harvoni train.
LilB