Aa
Starting treatment...
Any advice for the first day of treatment and what to expect? I have the 20 grams of fat thing down. Just worried about how sick I will be. I know we are all different and react differently.. Any hints on how to get through this? Have gotten so much good info from watching all of you. I just signed up to your community. So, any and all info would be great. Going to get meds for the triple threat today. Have geno4, and starting with the incivek. Thanks, and God bless all of you.
I think the lotion (and your concoction) help and may very well be all you need. But there is a difference between dry itchy skin and a few little bumps versus a generalized systemic drug reaction with hives, papules, etc.
I was fine until week 10 or so and I was using keri lotion and aquaphore. At week 10 the fun began, lol.
Like I said, your concoction may work perfectly. You also may not get a bad skin reaction or systemic drug reaction. (I think only 56% get the rash.)However, I do mention the difference because if you get a bad systemic reaction with a generalized rash and hives, you need to get prescription meds sooner rather than later because it will snowball and just get worse.
But you may be in the 44% and not get the rash.
Truthfully, even with the nausea and the rash and the anal problems, I did not get anemic and nothing knocked me off treatment, so I am very happy about that. Plus, had my docs been on the ball and gotten on top of those problems as soon as they appeared, I would have had a much easier treatment. (I know for next time if I ever have to treat again, which I surely hope I do not, lol.)
I was fine until week 10 or so and I was using keri lotion and aquaphore. At week 10 the fun began, lol.
Like I said, your concoction may work perfectly. You also may not get a bad skin reaction or systemic drug reaction. (I think only 56% get the rash.)However, I do mention the difference because if you get a bad systemic reaction with a generalized rash and hives, you need to get prescription meds sooner rather than later because it will snowball and just get worse.
But you may be in the 44% and not get the rash.
Truthfully, even with the nausea and the rash and the anal problems, I did not get anemic and nothing knocked me off treatment, so I am very happy about that. Plus, had my docs been on the ball and gotten on top of those problems as soon as they appeared, I would have had a much easier treatment. (I know for next time if I ever have to treat again, which I surely hope I do not, lol.)
O M G!!! I have been warned that I will more than likely get the rash problem. Yours seems so severe. Bless your heart for sharing that one. My PA told me to go to Dollar General, and this is what we put in a small crock pot on low, and melted down and took a wire whisk to mix it while cooling. Equal parts of real vaseline, not generic, Johnson's baby lotion, and stick cocoa butter. I started using it a couple days ago, because my skin is so dry. It really soaks in. Hopefully I jumped on it, and won't go thru what you have. My 21 year old son stirred that stuff with the whisk for about 20 minutes, and we put it in a bowl, with a bowl of ice under it while he stirred, and it cooled. Maybe that's one nobody has heard of. Take my first shot tonite, so we'll see if it helps. Thank you SOOO much. Maggie
oops... Thank you thank you thank you. More stuff to wrap my brain around. You all are wonderful!!!!
Thanks, Billy. Took my first pills this morning, and slept immediately for another 3 1/2 hours. Second pills on time, too, and, so far, not tired. First shot is tonite, and that's what scaring me. Today has seemed way too easy, and I know it's not going to be. But, I am determined. Been slamming water all day, nothing new there. Thanks for the heads up on my shot tonite. You all have been so wonderful, I have learned so much from you people. Way more than the dr world. Once again, thanks for your time, and I'm sure you'll be hearing from me. Thanks, Billy.... Maggie
Welcome! I am new here too. I see you are getting great advice. I will be treating with boceprevir so the timeline is different. Someone mentioned the need for regular lab work. You can ask your doc for a standing order. This way the lab is aware of your regular tests. I made extra copies and labeled each one; wk.1, wk.2, wk.4, week 8... If I'm not feeling well, at least I know what I'm testing for on a particular week.
Wishing you the best, on this journey.
Wishing you the best, on this journey.
i am unfamiliar with genotype 4. but i'd like to welcome you to this forum. we are a very caring bunch and always eager to answer questions or give advise. good luck with your treatment. belle
I never became anemic and many others also have not become anemic. My Hemoglobin was monitored every week for 12 weeks and it never dropped below 11.1. (Now up in the 12 range) My other blood counts were fine too. But they do need to be monitored in case thatis one of your side effects.
My biggest problems were as follows:
anal/rectal - burning but also internal fisures or something that made it feel like I was passing shards of glass. This was internal so the stuff for the outside did nothing for this internal pain. Lucky for me I do a lot of trial and error and I discovered that I had zero anal/rectal problems as long as I kept the stools very firm. Oh, I did get hemorrhoids but they seem to be almost gone now.
Nausea/vomiting - this can really creep up on you. I mean, you know you are nauseated and bloated and passing gas and belching a lot, but it can creep up on you and can get worse as the days go on. I had nausea from about day 2, lol. But I was still able to eat most things. But, as time passed and I felt worse and worse, I was basically eating only Greek Gods yogurt and eggnog and saltines or toast. I got really ill, systemically and physiologically. I told my case manager every week that I was nauseated but she did nothing and I was new to this so I thought there was nothing they could give me (until I got on this forum, lol). Then I discovered many were on Zofran for the nausea. When I started vomiting I insisted on something and I finally got Zofran, but this was 8 or 9 weeks into treatment and by then Iwas very, very sick (rapid heart rate, runs af tachycardia, premature heart beats, swollen ankles and feet, profound fatigue, dizziness, constan bloat and nausea, shortness of breath). They sent me to cardiology for an exam and a lot of tests. Then I finally got Zofran about 2 days later (after demanding it from the case manager) and it helped right away. Within just a few days all of those other symptoms, the systemic and cardiac symptoms disappeared and I also could eat again.
Rash and Itching: This did not start until about week 10. Then it blossomed. It started as hives on my forearms and eventually went everywhere except my face and neck and my back (just a few on my back). The case manager saw the rash and did nothing. She thought it would get better. It got worse, lol. I finally got some fluocinonide ointment which helped, expecially the itching, but it took weeks to clear an area and then it just moved next door (where there was no fluocinonide oint.). Finally I saw the dermatologist who put me on Hydroxyzine oral plus the Fluocinonide ointment and also clobetesol soln. for my scalp (hives in the scalp too). It was the correct dose of hydroxyzine that has finally gotten this rash and itching under control (4 months now of rash and itching). This is another situation where the drug reaction was not just causing the hives and itching. It was affecting me systemically and physiologically too. I knew I felt like crap but I did not realize how much of it was due to the drug reaction until I got on the hydroxyzine which controlled the drug reaction, the rash, the itching. I felt like a new woman. I could not believe how much better I felt on the hydroxyzine. I should have been on that in Dec.
I can tell you that I am positive if the case manager had been on the ball and had known how to properly assess a person, recognize there was a problem, and do critical thinking and problem solving, neither the nausea nor the rash and itching would have progressed like they did. They should have all been nipped in the bud, not ignored for weeks on end.
This is why I encourage people to get on the side effects right away, especialy the three that I mentioned (since they can be treated with presciption meds). Get something for them right away. They snowball if they are not addressed. One problem leads to another, like a row of falling dominos. I did not know any of this when I started. I figured the case manager knew what she was doing and would treat all of the side effects that they could treat. She assured me she did know her field and they would treat the side effects. But she did not. I had to demand everything I got from her and that was long after I should have been on the meds for the sides. (If I ever have to do this again, I will know what to do and I will be very assertive.)
Anyway, best of luck treating and hopefully your side effects will be mild. If you do get side effects, get on them immediately.
My biggest problems were as follows:
anal/rectal - burning but also internal fisures or something that made it feel like I was passing shards of glass. This was internal so the stuff for the outside did nothing for this internal pain. Lucky for me I do a lot of trial and error and I discovered that I had zero anal/rectal problems as long as I kept the stools very firm. Oh, I did get hemorrhoids but they seem to be almost gone now.
Nausea/vomiting - this can really creep up on you. I mean, you know you are nauseated and bloated and passing gas and belching a lot, but it can creep up on you and can get worse as the days go on. I had nausea from about day 2, lol. But I was still able to eat most things. But, as time passed and I felt worse and worse, I was basically eating only Greek Gods yogurt and eggnog and saltines or toast. I got really ill, systemically and physiologically. I told my case manager every week that I was nauseated but she did nothing and I was new to this so I thought there was nothing they could give me (until I got on this forum, lol). Then I discovered many were on Zofran for the nausea. When I started vomiting I insisted on something and I finally got Zofran, but this was 8 or 9 weeks into treatment and by then Iwas very, very sick (rapid heart rate, runs af tachycardia, premature heart beats, swollen ankles and feet, profound fatigue, dizziness, constan bloat and nausea, shortness of breath). They sent me to cardiology for an exam and a lot of tests. Then I finally got Zofran about 2 days later (after demanding it from the case manager) and it helped right away. Within just a few days all of those other symptoms, the systemic and cardiac symptoms disappeared and I also could eat again.
Rash and Itching: This did not start until about week 10. Then it blossomed. It started as hives on my forearms and eventually went everywhere except my face and neck and my back (just a few on my back). The case manager saw the rash and did nothing. She thought it would get better. It got worse, lol. I finally got some fluocinonide ointment which helped, expecially the itching, but it took weeks to clear an area and then it just moved next door (where there was no fluocinonide oint.). Finally I saw the dermatologist who put me on Hydroxyzine oral plus the Fluocinonide ointment and also clobetesol soln. for my scalp (hives in the scalp too). It was the correct dose of hydroxyzine that has finally gotten this rash and itching under control (4 months now of rash and itching). This is another situation where the drug reaction was not just causing the hives and itching. It was affecting me systemically and physiologically too. I knew I felt like crap but I did not realize how much of it was due to the drug reaction until I got on the hydroxyzine which controlled the drug reaction, the rash, the itching. I felt like a new woman. I could not believe how much better I felt on the hydroxyzine. I should have been on that in Dec.
I can tell you that I am positive if the case manager had been on the ball and had known how to properly assess a person, recognize there was a problem, and do critical thinking and problem solving, neither the nausea nor the rash and itching would have progressed like they did. They should have all been nipped in the bud, not ignored for weeks on end.
This is why I encourage people to get on the side effects right away, especialy the three that I mentioned (since they can be treated with presciption meds). Get something for them right away. They snowball if they are not addressed. One problem leads to another, like a row of falling dominos. I did not know any of this when I started. I figured the case manager knew what she was doing and would treat all of the side effects that they could treat. She assured me she did know her field and they would treat the side effects. But she did not. I had to demand everything I got from her and that was long after I should have been on the meds for the sides. (If I ever have to do this again, I will know what to do and I will be very assertive.)
Anyway, best of luck treating and hopefully your side effects will be mild. If you do get side effects, get on them immediately.
Genotypes 1-4 are seen in the US, and we've had a few forum members here that I can recall with genotype 4.
I am so glad I did not offend you. I read Genotype 4 is more common in other countries as well and that's why I thought it seemed kind of curious.
I know all this is a lot to take in but you seem to be catching on fast! I would cut and paste Pooh's post and put it in your journal since so much of it is spot on.
This one too:
http://www.medhelp.org/posts/Hepatitis-C/Worried/show/1721288#post_7883369
Given the dramatic increase of members treating (or curious about it) with the new PI's, I wish MedHelp was the type of site to have a permanent, read-only thread for Pre-treatment info related to the new Protease Inhibitors. Many forums call this type of post a "Sticky" post"
http://www.medhelp.org/posts/Hepatitis-C/Worried/show/1721288#post_7883369
This is really one of the most comprehensive posts that addresses lots of the Frequently Asked Questions for those treating with PI's the first time.
I know all this is a lot to take in but you seem to be catching on fast! I would cut and paste Pooh's post and put it in your journal since so much of it is spot on.
This one too:
http://www.medhelp.org/posts/Hepatitis-C/Worried/show/1721288#post_7883369
Given the dramatic increase of members treating (or curious about it) with the new PI's, I wish MedHelp was the type of site to have a permanent, read-only thread for Pre-treatment info related to the new Protease Inhibitors. Many forums call this type of post a "Sticky" post"
http://www.medhelp.org/posts/Hepatitis-C/Worried/show/1721288#post_7883369
This is really one of the most comprehensive posts that addresses lots of the Frequently Asked Questions for those treating with PI's the first time.
Hmmm, I would advice, around 6 weeks, really take a good look at your labs, and what your HGB reads. The Triple therapy can cause something called hemolytic anemia, so if your HGB goes under 10, it's good to use a rescue med, like Procrit, before it drops too low, and is harder to treat.
I'm on the other one, Victrelis, not Incivek, but they both cause something that we refer to, around here, as "fire butt". My Doctor mentioned that she thinks it might be caused by not enough food in the stomach, when the Invivek (or Victrelis) is taken. I also cut out all spicey food, garlic, and onions.
Also, I use fragrance free skin products, because the skin can be prone to rashes, but it hasn't happened to me~ good luck!
I'm on the other one, Victrelis, not Incivek, but they both cause something that we refer to, around here, as "fire butt". My Doctor mentioned that she thinks it might be caused by not enough food in the stomach, when the Invivek (or Victrelis) is taken. I also cut out all spicey food, garlic, and onions.
Also, I use fragrance free skin products, because the skin can be prone to rashes, but it hasn't happened to me~ good luck!
Thanks Jules. Gonna need all the luck I can muster. I am very, very determined, so I know that is a plus. Keep in touch, someday when I am sitting here, I'll let you know where the Chainsaw came from... LOL Love this forum. Have found people that really know their stuff, and I have a lot to learn.
wow.. Thanks. You just gave me a wonderfully condensed version of everything I have been trying to get all in front of me at the same time to look at.. I drink tons and tons of water, so that doesn't seem hard. Hope I get all the rest of it down pat. Thanks so much!! Maggie
Positive about being a 4. My NP said this is very rare, as it most common in I think Egypt and West Africa. Never been to either, nor do I know anybody who has. I am certainly not offended at all by any and questions, I know so little about all of this. I have been watching the forum for awhile, and I was sorta wondering why I haven't seen a 4 yet, either, from anybody else. Totally positive, though. Any info???
Thanks so much for the info. Didn't know about the labs every week. Crap, there's just so very much I don't know. I really appreciate all of the wonderful people in this community, and thanks so much for taking your time to answer me. Will be watching you. That wasn't meant to be creepy!!! You sure seem to know a lot, and I sure do have a lot to learn. Please keep in touch. Thanks, AGAIN! Maggie
That is a great handle!!!
I would not try to drink gallons of water the first days out.
If you can get (1) gallon down to start you'll be doing good.
Also, you don't want to get your electrolites off balance.
There is such a thing as too much water in the body.
I would not try to drink gallons of water the first days out.
If you can get (1) gallon down to start you'll be doing good.
Also, you don't want to get your electrolites off balance.
There is such a thing as too much water in the body.
Hi chainsawmaggie.....LOL....have to admit I love your handle. Cracked me up. I don't know anything about G4 but welcome to the forum and best of luck!
Jules
Jules
I took a 325 mg Tylenol 1/2 hour before my injection and another one 1/2 hour after my inj. I do my injections on Monday eves about 8:30pm. I think the tylenol helped. I also usually take one the next am because sometimes I feel a bit headachy.
My first day on the meds I took the pills in the am and felt rather spaced out, not quite all there. That spaced feeling left after 2-3 days, in the meantime I rested a lot.
I never got real sick from the injections, mainly just a little headachy, a few other aches, bad fatigue and malaise, no motivation, brain fog, but nothing like fever or vomiting or chills from the injection.
You may do fine and have very few side effects. Drink as much water as you can (I was told 4 gallons a day). I think the tylenol is a good idea around injection time. I think doing the inj. in the eve is best so you can go to bed shortly after the inj.
And, as mentioned above, stay out of the heat and sun, keep the house cool, do not get hot.
Also, it is good to have a small supply of benadryl, loperimide, Huggies baby wipes (for the butt), preparation H cream, and hydrocortizone cream. you may not need all of them but it is better to have some on hand if you need them in the middle of the night or have exploding diarrhea and cannot go out to get Loperimide.
One last thing, keep your stools firm, quite firm. If they get loose or soft, the anal/rectal problems really get bad. By trial and error I figured out the firm stool solution but not before crapping "shards of glass" a few times.
Post any side effects you need help with and we will chime in.
Best of luck.
My first day on the meds I took the pills in the am and felt rather spaced out, not quite all there. That spaced feeling left after 2-3 days, in the meantime I rested a lot.
I never got real sick from the injections, mainly just a little headachy, a few other aches, bad fatigue and malaise, no motivation, brain fog, but nothing like fever or vomiting or chills from the injection.
You may do fine and have very few side effects. Drink as much water as you can (I was told 4 gallons a day). I think the tylenol is a good idea around injection time. I think doing the inj. in the eve is best so you can go to bed shortly after the inj.
And, as mentioned above, stay out of the heat and sun, keep the house cool, do not get hot.
Also, it is good to have a small supply of benadryl, loperimide, Huggies baby wipes (for the butt), preparation H cream, and hydrocortizone cream. you may not need all of them but it is better to have some on hand if you need them in the middle of the night or have exploding diarrhea and cannot go out to get Loperimide.
One last thing, keep your stools firm, quite firm. If they get loose or soft, the anal/rectal problems really get bad. By trial and error I figured out the firm stool solution but not before crapping "shards of glass" a few times.
Post any side effects you need help with and we will chime in.
Best of luck.
You are Genotype 4? I hope I you do not think I am out of line for asking this but are you certain about your Genotype? It's just that I rarely see it mentioned and I was curious. Welcome to the Forum!
After my first injection I had a bad headache.
It was recommended I take Tyelenol before my second injection.
headache after second injection. That worked well for me.
The best advice I've been given and the most difficult for me was
drinking lots and lots of water.
Also, stay out of heat and sun unless you like scratching.
It was recommended I take Tyelenol before my second injection.
headache after second injection. That worked well for me.
The best advice I've been given and the most difficult for me was
drinking lots and lots of water.
Also, stay out of heat and sun unless you like scratching.
not sure about g4...but...you might have bad symptoms..you might not....i had bad symptoms but most likely will clear the virus...we will see...first make sure to talk with your doctor about what to do if your blood counts get low or high...like when to bring in rescue drugs like procrit or whatever...make sure to let anyone close to you know the symptoms can be tough...you may not be who you think you are to other folks...maybe start and ad if you haven't already....get your blood work ..cbcs...done every week..keep a close eye on them...you can always post blood work on this forum and theres lots of help here...if you do post remember that folks are taking there time to answer you and sometimes its easy to get aggravated while on tx...make sure to have a pill organizer...cheap at walmart....wash in cold water or at least not hot...the hot feels good while your in it but later can be really itchy....the goal is to beat the virus..i would take it easy instead of working too hard or working out too hard...i took the drugs until i could barely walk...but some folks seem to clear being able to do all kinds of stuff...everyone is different...my first shot was the worse shot by far..i got very sick...the symptoms change as treatment moves on...i always ate my incivek on time..very important!....if you use reader glasses your eye site may get worse but will come back after tx...so theres some stuff to think about..stay on the forum and ask questions...the outside world wasn't any help to me....good luck...billy
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