Aa
Fear
I am only two weeks into treatment and am so anxious. Every time an unfamiliar side effect pops up I fall apart. I am afraid that I will be this ill for all 27 weeks of treatment. How do you deal with the fear?
Results. The role of RVR in the treatment of patients with chronic hepatitis C varies according to viral genotype. Among patients with HCV G2/G3 infection, several studies have shown that shortening the treatment duration to 12–16 weeks is effective among those who attain RVR. In contrast, RVR may be used as an indicator for both shortened and extended treatment durations among patients with HCV G1 infection. HCV G1—infected patients with low baseline viral load who attain RVR may be effectively treated for 24 weeks, whereas patients who do not attain RVR may be candidates for an extended 72‐week regimen.
I didn't read the whole thread because I'm at that lack of motivation stage or lack of something but I care enough to say you may need to bring up the fear to your Dr especially since you say you fall apart, I don't know how bad you mean but these meds can cause or agrivate anxiety disorders and depression and mental stuff I know that didn't sound very medical but my point is you fear if it is bad could be helped with some sort of ad. I am bipolar so I was already on meds but luckily they added one for anxiety for me before I started this or I would have already lost it. This is not for everyone though so talk to your Dr if you feel your fear is a problem so it doesn't get out of control and don't let all that I just said make you worry lol.
Btw I have a 4 year old at home so I understand! I was super mom and now I rarely leave the couch. I AM STILL SUPER MOM NECAUSE I AM GETTING TREATED. As guilty as we feel, the kids will be okay. I bought my son a whole doctor kit and make him very much part of my treatment. The reward for us will be my recovery. This is a family effort at my house..sometimes us supermoms need to have our super kids help us out and that's okay!! My son, husband and I are all bonding so much more over this whole experience. Love will prevail.
Hi and welcome:)
I posted almost the very same thing right where your at entitled "feeling discouraged."
A lot of the same wonderful people who have helped you also helped me...and continue to do so.
I am on week 8 and have had every symptom of tx there is..and have had the same fear.
I want to tell you though...out of nowhere I'm having a really great week. Next week who knows...but THIS WEEK has been pretty great. Even with some sides and a couple depressed moments. So does it get better? Ultimately with svr YES!!! For now...we yoyo around a bit but there are better PARTS of tx. I promise! This week was better. That was cool. just thought I'd share that there still are sunny days in your forecast, you can do this!
WELL WISHES,
Laura
I posted almost the very same thing right where your at entitled "feeling discouraged."
A lot of the same wonderful people who have helped you also helped me...and continue to do so.
I am on week 8 and have had every symptom of tx there is..and have had the same fear.
I want to tell you though...out of nowhere I'm having a really great week. Next week who knows...but THIS WEEK has been pretty great. Even with some sides and a couple depressed moments. So does it get better? Ultimately with svr YES!!! For now...we yoyo around a bit but there are better PARTS of tx. I promise! This week was better. That was cool. just thought I'd share that there still are sunny days in your forecast, you can do this!
WELL WISHES,
Laura
Welcome to the Hep C forum. You are in good hands here. Try try try to be here now....one symptom at a time. All that you can do is to deal with the symptom that you are having now, not the ones that you might have. so happy to hear that you will meet with your doctor soon. Be sure to address EVERY concern that you are having. I am at week 3 1/2 and am doing well with symptoms so far and truly pray that your treatment will be gentle on you. Check in here as often as you can with all of these folks in the know. Continue to care for yourself in the most diligent and loving way and please let us help you where we can. Best wishes forward.
How often are you doing labs ? At first my doctor had me doing labs every week, as our blood levels can drop dramatically. It's important to monitor these things closely until you stabilize.
If fear and anxiety is a big issue, you may want to discuss going on an AD with your doctor. This is common during tx. It can help smooth things out.
Good luck.
If fear and anxiety is a big issue, you may want to discuss going on an AD with your doctor. This is common during tx. It can help smooth things out.
Good luck.
hrsepwrguy may be pointing out, up there ^^^, that if our viral loads are not undetectable at week 4, that treatment will be longer than 28 weeks~
Previously Untreated Patients Following Response Guided Therapy
(HCV-RNA Results)
At Treatment Week 8 At Treatment Week 24
Undetectable Undetectable
Complete three-medicine regimen at TW28
At Treatment Week 8 At Treatment Week 24
Detectable Undetectable
1. Continue all three medicines and finish through TW36; and then
2. Administer peginterferon alfa and ribavirin and finish through
TW48.
http://www.merck.com/product/usa/pi_circulars/v/victrelis/victrelis_pi.pdf
(HCV-RNA Results)
At Treatment Week 8 At Treatment Week 24
Undetectable Undetectable
Complete three-medicine regimen at TW28
At Treatment Week 8 At Treatment Week 24
Detectable Undetectable
1. Continue all three medicines and finish through TW36; and then
2. Administer peginterferon alfa and ribavirin and finish through
TW48.
http://www.merck.com/product/usa/pi_circulars/v/victrelis/victrelis_pi.pdf
Yes, I had that same kind of anxiety, my first 8 weeks of TX. I am now on week 10, and so my fear has lessened, a bit.
I have two kids at home, and a spoiled chihuahua. Believe me, even though I waited until my sons were almost 10 and 12 yrs old, I have gotten no understanding from them, about me not being able to function, like I used to.
I actually think my "dizzy" feeling got better, with time. What I do, when I feel scared ( I used to be scared that these meds would kill me, becuz I've never had to take meds before, I have always been a healthy person) is try to distract myself, by making myself a lil snack, or taking the dog on a small walk, etc. Lots of these side effects tend to only last about 20~40 minutes, they rove around, but a good healthy meal always grounds me.
I started the Victrelis after 4 weeks, and by 6 weeks, I did start getting anemic. Always make a copy of your labs (blood work) and watch the one that says "HGB". Then you can keep an eye on how slow (or fast) your HGB is sliding down. Do you know what your HGB was prior to treatment? This is a good thing to know. Mine was already a little low, about 13., then it slowly dropped until on week 6 it was anemic, and my doctor started me on a "rescue med", for the anemia, called Procrit. The thing is, to stay on top of it, because I had to get a Prior Authorization from my insurance company, and they wont give you the Procrit, until your HGB is below 10., at least my insurance co didn't.
And dont worry, some dont even get anemia, and if you do, it's not that bad, I can still go shopping, do the laundry, prepare some of the meals, and spend quality time with the kids. It's just like having a mild flu, only for 28 weeks, ahhh
Checking in here, everyday, also keeps my mind feeling strong, and I feel more "in control", by arming myself with all this knowledge, concerning Hep C, and treatments, so...keep coming back!
I have two kids at home, and a spoiled chihuahua. Believe me, even though I waited until my sons were almost 10 and 12 yrs old, I have gotten no understanding from them, about me not being able to function, like I used to.
I actually think my "dizzy" feeling got better, with time. What I do, when I feel scared ( I used to be scared that these meds would kill me, becuz I've never had to take meds before, I have always been a healthy person) is try to distract myself, by making myself a lil snack, or taking the dog on a small walk, etc. Lots of these side effects tend to only last about 20~40 minutes, they rove around, but a good healthy meal always grounds me.
I started the Victrelis after 4 weeks, and by 6 weeks, I did start getting anemic. Always make a copy of your labs (blood work) and watch the one that says "HGB". Then you can keep an eye on how slow (or fast) your HGB is sliding down. Do you know what your HGB was prior to treatment? This is a good thing to know. Mine was already a little low, about 13., then it slowly dropped until on week 6 it was anemic, and my doctor started me on a "rescue med", for the anemia, called Procrit. The thing is, to stay on top of it, because I had to get a Prior Authorization from my insurance company, and they wont give you the Procrit, until your HGB is below 10., at least my insurance co didn't.
And dont worry, some dont even get anemia, and if you do, it's not that bad, I can still go shopping, do the laundry, prepare some of the meals, and spend quality time with the kids. It's just like having a mild flu, only for 28 weeks, ahhh
Checking in here, everyday, also keeps my mind feeling strong, and I feel more "in control", by arming myself with all this knowledge, concerning Hep C, and treatments, so...keep coming back!
to me the fear is of the unknown and i find this is true with many folks. it is a lack of control that is frightening. as u go thru tx u will begin to get a sense of what it is like for u. the fear for me was mostly an early symptom. i stayed close to this forum and voiced questions as soon as they came up. the answers came day and night and were hugely comforting. better than a direct line to my doc! hang in there and know that it is a bit of a rollercoaster ride but that many folks have gotten to the other side and are now svr. i am one of those and i wish it for you. best, babs
I see your other post now. I would suggest getting a timer or some alarm clocks or something. I had a timer that I carried from room to room and this was to be certain to take the Incivek on time. When it rang, I would reset it for another 8 hours and go take my pills. At night I set the alarm for the following am. You really have to get anal with the times, lol.
No, I do not have kids at home. I live by myself, which has its advantages and its disadvantages.
I think if your kids are small, or even if they are a little older, maybe it would help if you had some help looking after them (from a sitter, from friends, from relatives, from husband) even if the breaks are a few hours here and there. Also, hopefully someone can help you with cooking for the kids. Or, buy really easy to prepare foods. I did that because I never felt like cooking (way too tired).
I know it has to be difficult for mothers with children to treat. I cannot even imagine. I barely had enough energy to take care of myself, let along take care of kids too.
I think if your kids are small, or even if they are a little older, maybe it would help if you had some help looking after them (from a sitter, from friends, from relatives, from husband) even if the breaks are a few hours here and there. Also, hopefully someone can help you with cooking for the kids. Or, buy really easy to prepare foods. I did that because I never felt like cooking (way too tired).
I know it has to be difficult for mothers with children to treat. I cannot even imagine. I barely had enough energy to take care of myself, let along take care of kids too.
Hi there,
We're on a similar timeline. I took my 2nd shot on 4/15. The following nite(last nite) I was down for the count; total flu-like symptoms. Feel dandy today. I try to visualize my body, using these drugs, to battle them gnarly viral units. Being on this site can only help us as we share each others stories and tips.
I too, am starting boc on day 29. I am more worried about taking my pills on time, than the side effects. So, cheers to us for taking on the big fight. And I'm all for LIVING, one day at a time.
We're on a similar timeline. I took my 2nd shot on 4/15. The following nite(last nite) I was down for the count; total flu-like symptoms. Feel dandy today. I try to visualize my body, using these drugs, to battle them gnarly viral units. Being on this site can only help us as we share each others stories and tips.
I too, am starting boc on day 29. I am more worried about taking my pills on time, than the side effects. So, cheers to us for taking on the big fight. And I'm all for LIVING, one day at a time.
I am due to have my blood checked on Monday of next week. I began treatment on April 6. This was the first day that I have felt like I've been hit by a bus. Somehow, pain is manageable for me but the dizziness makes me feel so helpless. Do you have kiddos at home? I was just wondering how women manage being #1 Mom when your body does not want to cooperate? Thank you for taking the time to encourage and inform me. This forum has been an answer to prayer for me. I am so grateful for the advice.
Thanks for the info. I will call my dr. and let her know what's going on. Did anything get any better over your 13 weeks? I feel so guilty about all of the things I can't do for my kids during this treatment. I will try to keep my eye on the ultimate goal of being virus undetectable. Thank you for your kindness.
If I recall correctly, I felt pretty crummy and spaced out the first few days of treatment. I know for sure I did the first 2-3 days of treatment. I had to lie down a lot because I felt weak and woozy and like I might faint. It was not anemia. It was the meds and my body was trying to adjust to them. I do think a person does adjust somewhat to the meds and some symptoms get better. Of course, some symptoms tend to be accumulative, so some may get worse. (I have been on treatment for 29 weeks and I actually feel better now than I did during most of my treatment. So one never knows.
You should have your blood counts checked every 1-2 weeks to see how you are doing and to make sure you are not getting anemic. If you do get anemic then the docs can treat you with Procrit of transfusions. Not everyone gets anemic. My hemoglobin never went below 11.1.
If the dizziness continues, I think I would talk to my doctor about it. The doctor should be aware of the fact that you are experiencing the dizziness.
Dizziness may be from the meds but it could be another problem (like inner ear problem).
As far as advice, continue to drink lots of water and liquids. Try to eat as normally as possible. Try to get a little excercise daily, even if just walking. Rest. Do not over do. If you feel tired, rest for a bit. Don't over commit yourself. Let the housework go if necessary. (My floors never saw a vacuum cleaner for about 4 to 5 months.) Do something constructive every day ... bills, dishes, sweep, laundry, grocery shop, etc. ... but don't try to do them all in one day. Stay on top of your blood counts. Ask for medication is you get nausea, vomiting, itching or rash. Let your doc know all of your side effects.
You should have your blood counts checked every 1-2 weeks to see how you are doing and to make sure you are not getting anemic. If you do get anemic then the docs can treat you with Procrit of transfusions. Not everyone gets anemic. My hemoglobin never went below 11.1.
If the dizziness continues, I think I would talk to my doctor about it. The doctor should be aware of the fact that you are experiencing the dizziness.
Dizziness may be from the meds but it could be another problem (like inner ear problem).
As far as advice, continue to drink lots of water and liquids. Try to eat as normally as possible. Try to get a little excercise daily, even if just walking. Rest. Do not over do. If you feel tired, rest for a bit. Don't over commit yourself. Let the housework go if necessary. (My floors never saw a vacuum cleaner for about 4 to 5 months.) Do something constructive every day ... bills, dishes, sweep, laundry, grocery shop, etc. ... but don't try to do them all in one day. Stay on top of your blood counts. Ask for medication is you get nausea, vomiting, itching or rash. Let your doc know all of your side effects.
have you mentioned this to your doctor? Sometimes the Rib can cause anemia and once you start the Vic, that can contribute to anemia as well...It's always best to keep your doc in the loop, don't let sides get too out of hand...there are other symptoms of anemia besides the dizziness, there might be shortness of breath, pain in your chest, heart palpitations....have you ahd any of these symptoms? if youo do get anemia and ti gets too bad, they have rescue drugs they can use, or sometimes they adjust the Rib, or sometimes both.
I am on dual therapy, Peg/Rib (type 2 HCV), just completing week 13 this Friday, I have had a few pretty scary dizzy episodes, but my HGB are not too bad right now (this is one of the measurements for anemia), luckily when i have had these episodes, I have been sitting down.
Anyway you let your doc know, he may want to do blood test to see how you are reactining to the drugs.
I am on dual therapy, Peg/Rib (type 2 HCV), just completing week 13 this Friday, I have had a few pretty scary dizzy episodes, but my HGB are not too bad right now (this is one of the measurements for anemia), luckily when i have had these episodes, I have been sitting down.
Anyway you let your doc know, he may want to do blood test to see how you are reactining to the drugs.
I know what you mean about Google. My husband has pretty much forbade me from searching out stuff anymore. I just get so nervous at every new turn that I need to be reassured that it is "normal". Unfortunately, I end up in a full blown panic attack once I've read 285 horror stories from Googling Hep C.
Thank you all so much for answering so quickly. I am currently on Pegintron and Ribovirin. I will be adding the Vicrellis on day 29. The symptom I am currently struggling with is the dizziness. I have been drinking water like an elephant and supplementing Gatorade if I have any diarrhea. I am just afraid that dizziness always means anemia. I'm trying to be brave and I am usually a pretty strong person but this has brought me to me knees. Is there any chance that there are better days on the horizon? This process is so overwhelming to me. What a relief to have somewhere to talk with folks who have been there. Any advice would be so appreciated.
Hello and welcome to the forum.
I think we were all pretty anxious when we started treatment. I found that the side effects seem to change from day to day and week to week. Since I started treatment I have had the fatigue, malaise, lack of motivation, flu like feelings, muscle fatigue most of the time to some degree. The big problems for me were the nausea (and some vomiting) and the bloating, and also the rash and itching. These things can be treated with prescription meds. The fatigue and malaise you just have to put up with, but nausea. vomiting, rash and itching can be treated successfully.
I don't know what meds you are on but if you are on Incivek and have the flaming butt problems or the shards of glass feeling then post here and we can offer our remedies.
As 1oftheclub said, post your side effects and we will respond with our remedies.
Over the past 29 weeks I have had this range of symptoms, a few that persist but many are transitory or minor:
fatigue
malaise
flu like symptoms
aches (headaches, joint aches, muscle aches)
muscle fatigue
lack of motivation
lack of concentration
inability to get started on things
inability to focus
heavy legs and feet (like walking through 2 feet of mud with lead boots on)
dizziness
spinning sensation
balance problems
runs of rapid heart rate (180 per min)
frequent premature beats
weakness
no appetite
horrible abdominal bloating (felt like I was carrying a 60 pound baby)
nausea and vomiting
rash
itching
anal/rectal burning and itching and feeling like passing shards of glass
I am sure I have missed a few (must have blocked them out, lol). This gives you an idea of the range of side effects and that they are common.
Most of the side effects I just put up with as they come and go. Some days I don't feel so good but other days I feel pretty good. I do tire easily. It got better after finishing Incivek.
Keep an eye on your blood counts. Anemia can make you feel pretty weak and tired.
I think we were all pretty anxious when we started treatment. I found that the side effects seem to change from day to day and week to week. Since I started treatment I have had the fatigue, malaise, lack of motivation, flu like feelings, muscle fatigue most of the time to some degree. The big problems for me were the nausea (and some vomiting) and the bloating, and also the rash and itching. These things can be treated with prescription meds. The fatigue and malaise you just have to put up with, but nausea. vomiting, rash and itching can be treated successfully.
I don't know what meds you are on but if you are on Incivek and have the flaming butt problems or the shards of glass feeling then post here and we can offer our remedies.
As 1oftheclub said, post your side effects and we will respond with our remedies.
Over the past 29 weeks I have had this range of symptoms, a few that persist but many are transitory or minor:
fatigue
malaise
flu like symptoms
aches (headaches, joint aches, muscle aches)
muscle fatigue
lack of motivation
lack of concentration
inability to get started on things
inability to focus
heavy legs and feet (like walking through 2 feet of mud with lead boots on)
dizziness
spinning sensation
balance problems
runs of rapid heart rate (180 per min)
frequent premature beats
weakness
no appetite
horrible abdominal bloating (felt like I was carrying a 60 pound baby)
nausea and vomiting
rash
itching
anal/rectal burning and itching and feeling like passing shards of glass
I am sure I have missed a few (must have blocked them out, lol). This gives you an idea of the range of side effects and that they are common.
Most of the side effects I just put up with as they come and go. Some days I don't feel so good but other days I feel pretty good. I do tire easily. It got better after finishing Incivek.
Keep an eye on your blood counts. Anemia can make you feel pretty weak and tired.
I have so been where you are! Sometimes I deal with the fear and frustration by telling myself it is worth it if I remain UND. The sides are reversible & won't last forever.
There are ways to deal with side effects and you are amongst others who are in the same boat so hopefully that will allay some of your fears. Plus, it's likely you won't have all the sides possible. The first time I felt Itchy I freaked. I imagined the horrible rash I read about and saw in Google images and I shoveled Benedryl in my mouth as fast as I could. I never ended up with the rash though.
I just think as prepared and supported you feel the less anxious you will be. Coming on line and reading posts about how others work through things and still manage to function helps me get a grip as well. Hang in there!
There are ways to deal with side effects and you are amongst others who are in the same boat so hopefully that will allay some of your fears. Plus, it's likely you won't have all the sides possible. The first time I felt Itchy I freaked. I imagined the horrible rash I read about and saw in Google images and I shoveled Benedryl in my mouth as fast as I could. I never ended up with the rash though.
I just think as prepared and supported you feel the less anxious you will be. Coming on line and reading posts about how others work through things and still manage to function helps me get a grip as well. Hang in there!
Post your side effects here, I would bet more then a few have had the same thing and suggestions for dealing with it. what treatment are you on?
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