Aa
started hep c treatment
I am going into the third week of the hep c treatment, and i am feeling worse then I ever did, my gums are bleeding, i get headaches, I am chronically tired, can no longer function in day to day life, and a little depressed, on top of it all for the last several weeks I have a rash that pops up all over my body and the itching is crazy.. creams and ointments seem to help a little, dr gave cream, and some pills that help a little, is this the way it is supposed to be, the Dr says this is normal, but I was sugar coated in the start, I was told that a few people get this rash and maybe some people experience headaches and fatigue but most people have little side effects, anybody else like me ......????? oh yea I forgot to talk about the interferon (pegasys) once a week, and then a bad flu for the next couple of days.
Finally starting to feel better, been answering questions for others on this site, gives me a purpose. and finally realized that i am just going to feel this bad for a while, so just deal with it....
Thanks,
I rolled a troll up in rice paper and deep fried him, with a little sweet and sour sauce eggtrolls are quite good....lol
I rolled a troll up in rice paper and deep fried him, with a little sweet and sour sauce eggtrolls are quite good....lol
Yes, you are stuck in between a rock and a hard place...do you see any troll there, by the way? I hear eating them cures the creepy crawlies~
Man, we are fighting for our lives here. I
noticed you mentioned taking benadryl, but that causes dehydration, which we already get, from the meds. The Hydroxine (Atarax) pills are perscription, but they dont cause the dehydration. Try getting some of those (if you lived in my town, I would give you mine), and take them VERY regularly. It took a ew days, but I did see a difference. I also avoided heat, and stayed away from the sun.
I hope you start to feel better real soon~
Man, we are fighting for our lives here. I
noticed you mentioned taking benadryl, but that causes dehydration, which we already get, from the meds. The Hydroxine (Atarax) pills are perscription, but they dont cause the dehydration. Try getting some of those (if you lived in my town, I would give you mine), and take them VERY regularly. It took a ew days, but I did see a difference. I also avoided heat, and stayed away from the sun.
I hope you start to feel better real soon~
Yeah bad morning, depressed, everyone is at the fair and showing my prize animals and I am in my chamber of horrors, itching and itching, and worrying, but next wed I will have the results of the week 4 tx. and of course i am worrying about that, they already told me that I was further along then they thought and I will have to do the 48 weeks, blood sugar is ok still alot of ups and downs, and now that I cannot remember anything, I dont know if I did the insulin or not, took a risk and did it anyway, I hope I didnt mess up, guess I will have to use sticky notes lol . Thanks for responding I feel better already. it is so funny sometimes just typing to someone makes it easier and to know that I am not alone.....
Yeah bad morning, depressed, everyone is at the fair and showing my prize animals and I am in my chamber of horrors, itching and itching, and worrying, but next wed I will have the results of the week 4 tx. and of course i am worrying about that, they already told me that I was further along then they thought and I will have to do the 48 weeks, blood sugar is ok still alot of ups and downs, and now that I cannot remember anything, I dont know if I did the insulin or not, took a risk and did it anyway, I hope I didnt mess up, guess I will have to use sticky notes lol . Thanks for responding I feel better already. it is so funny sometimes just typing to someone makes it easier and to know that I am not alone.....
Yeah, anybody would feel the same way, in your shoes. You felt bad before yout Tx, with your sugar getting worse, and now...your Doc put you on the Incivek, which is known or terrible side effects.
Try to keep in mind, you only have 8 more weeks on
the Incivek. Once you are on just the Ribaviran and the Interferon, you should feel SO much better. There is a light at the end of the tunnel.
Usually, after you reach Undetected (viral load)..if you are still having bad side efects, then your Doctor can reduce your ribaviran dose a bit, which also makes us eel much better.
Our kids need us healthy, and the way you are feeling is terrible, but the problem is, if you didn't treat, then it would get worse.
Usually, if you get a viral load test that has your virus gone or almost gone, then that gives us an added boost, to carry on, as well.
Try to keep in mind, you only have 8 more weeks on
the Incivek. Once you are on just the Ribaviran and the Interferon, you should feel SO much better. There is a light at the end of the tunnel.
Usually, after you reach Undetected (viral load)..if you are still having bad side efects, then your Doctor can reduce your ribaviran dose a bit, which also makes us eel much better.
Our kids need us healthy, and the way you are feeling is terrible, but the problem is, if you didn't treat, then it would get worse.
Usually, if you get a viral load test that has your virus gone or almost gone, then that gives us an added boost, to carry on, as well.
Wow is all I can say on these last comments, I just want to scream stop stop stop..and wish I never started, but I am fortuante to get to start, the meds are very expensive, and not everyone has this chance , so I should feel lucky, but it is hard to feel lucky when you just want to lay down and die...
Well, I had the bleeding gums, prior to Tx, when my platelets began to drop, so I did stop the flossing, and bought a more gentle tooth-paste, and did the mouth-wash.
The bruising I got eaily, prior to Tx (prob due to the lower than normal platlets) and now, during Tx, I bruise very easily, even more so, prob because my platelets are even lower now, but still, not dangerously low.
To actually be in danger, the platelets have to be very, very low, like 20,000. But I was still very, very careful, and stopped ridingmy bike for the first 6 months. The danger is of an accident that will cause us to bleed internally..which is genreally a car accident, but then again, I was so outof it, I could see myself gettinghit by a car, while on my bike!
I did continue to drive, although I made a point of driving very careully, and a bit slowere than usual. There were many days I took the wrong exit...more then twice in a row. And now that I have been on the Interferon for 25 weeks, my driving seems to be worsening..sometimes I dont notice the other car at all, at an intersection- oops
The bruising I got eaily, prior to Tx (prob due to the lower than normal platlets) and now, during Tx, I bruise very easily, even more so, prob because my platelets are even lower now, but still, not dangerously low.
To actually be in danger, the platelets have to be very, very low, like 20,000. But I was still very, very careful, and stopped ridingmy bike for the first 6 months. The danger is of an accident that will cause us to bleed internally..which is genreally a car accident, but then again, I was so outof it, I could see myself gettinghit by a car, while on my bike!
I did continue to drive, although I made a point of driving very careully, and a bit slowere than usual. There were many days I took the wrong exit...more then twice in a row. And now that I have been on the Interferon for 25 weeks, my driving seems to be worsening..sometimes I dont notice the other car at all, at an intersection- oops
p.s. I don't know who told you that "few people experience side effects" (or significant side effects, or whatever, but I think that's probably a load. Sure, there are some very fortunate people who are able to treat with fewer side effects than others. And there are a good number of people who can still work (or who do force themselves to work), even though they may feel miserable much of the time.
Overall though, I'd say that tx is not generally the most pleasant time in the lives of people with hcv. It's something you get through so that you can have a better tomorrow and so that you have the possibility of eradicating the virus and avoiding some very serious potential consequences later in the course of the disease (at least that's how I looked at it).
I AM happy to say that as miserable an experience as tx was, it was still doable (and I am a super big weenie when it comes to my own personal suffering), And I did come out the other end. And today, I feel pretty great most of the time. Most importantly, I no longer have hcv.
Also, whatever experience you have during tx is normal for your system and there is someone who has had that experience before. It's ok to be annoyed at feeling lousy, or itching constantly, or whatever.
Overall though, I'd say that tx is not generally the most pleasant time in the lives of people with hcv. It's something you get through so that you can have a better tomorrow and so that you have the possibility of eradicating the virus and avoiding some very serious potential consequences later in the course of the disease (at least that's how I looked at it).
I AM happy to say that as miserable an experience as tx was, it was still doable (and I am a super big weenie when it comes to my own personal suffering), And I did come out the other end. And today, I feel pretty great most of the time. Most importantly, I no longer have hcv.
Also, whatever experience you have during tx is normal for your system and there is someone who has had that experience before. It's ok to be annoyed at feeling lousy, or itching constantly, or whatever.
I had a lot of different not so fun symptoms during tx, not the least of which was severe, transfusion dependent anemia, and towards the end (and after) profound depression.
Physically, I had weeks where I felt much worse than other weeks and I can't really say what was different about those weeks, other than that I just felt significantly more ill, fragile and nauseous those weeks (and with more mouth sores, etc). It didn't even necessarily coincide with my anemia. It just seemed as though there were perhaps three or four different weeks (at different times) where I felt much worse for a dew days after my interferon shot than I did the other weeks. I svr'd before the days of protease inhibitors, so I can't tell you how much that might also add to the overall effects of the tx drugs. I'm sure they are a factor though.
Physically, I had weeks where I felt much worse than other weeks and I can't really say what was different about those weeks, other than that I just felt significantly more ill, fragile and nauseous those weeks (and with more mouth sores, etc). It didn't even necessarily coincide with my anemia. It just seemed as though there were perhaps three or four different weeks (at different times) where I felt much worse for a dew days after my interferon shot than I did the other weeks. I svr'd before the days of protease inhibitors, so I can't tell you how much that might also add to the overall effects of the tx drugs. I'm sure they are a factor though.
Thank you I already contacted dr. had blood test yesterday and the white counts were low, dr. said with these meds it can cause bruising, she said to watch myself, and next week going to do full workup, I am to follow up if condition gets worse or starts to hurt badly, I was just worried and wanted to know if anyone else had this with tx.
I don't see your other thread concerning bruising this problem. You may want to post it again in a new thread.
I think if it was me I would let the doctor know about this bruising and your bleeding gums. This could be a sign of clotting problems. It may be a good idea to get a complete blood count and to check the bloods ability to clot.
I am not an expert on bleeding complications associated with Hep C treatment or liver disease. There are others on the forum who know more about these problems than I do. That is why I suggest posting a new thread entitled "bleeding problems on treatment" or something like that.
Best of luck.
I think if it was me I would let the doctor know about this bruising and your bleeding gums. This could be a sign of clotting problems. It may be a good idea to get a complete blood count and to check the bloods ability to clot.
I am not an expert on bleeding complications associated with Hep C treatment or liver disease. There are others on the forum who know more about these problems than I do. That is why I suggest posting a new thread entitled "bleeding problems on treatment" or something like that.
Best of luck.
I am getting bruising on the inside of both arms same place on interior of upper arm, is this the meds ??? I posted this as another thread just in case no one checked this one anymore.. help
today maybe a little better , but have to do injection later, as soon as you feel a little better then it is time for something else, but a least today is better...
I finished treatment about 3 months ago and I remember all the side affects. I remember waking up choking my mouth would be so dry, I keep couple bottles of water on my nightstand. I didn't get a rash but the itching is still there. I am not sure how long this will continue. This is my 2nd round of treatment. I hope all is going better.
Atarax should help with the creepy crawly skin feeling. Sometimes my husband would stand in front of the open door to the freezer or stand outside without a shirt on. Maybe the cold on his skin helped.
Hang in there trolleater.
Advocate1955
Hang in there trolleater.
Advocate1955
Yea I was a little rough last night, still feel bad today but did get some sleep, got up a 1 and took benedryl, I also use beudrraux butt paste for the rash it helps better then anything else I have used, thanks for looking out to tired to type anymore...... ttyl
Ohhhh, this sounds pretty bad. When I had my
itchy rash, I also had the "creepy-crawly" eeling. Have you tried the Hydroxizine pills, for anti-itch? They might be over-the-counter in Canada, but prob not, I got a perscription.
It sounds like you should stay very close to your
home, and only short drives, i you are feeling htat spacey. I actually had to stay very close to home, to remember to take the PI exactly every 8 hrs.
I had my hip pop out, and could no longer walk, around week 12, at week 14, my knees popped out...I was pretty much ready for a wheel-chair, I couldn't walk. When I had my ribaviran reduced, all symptoms got better. But you should be Undetected, beore a riba-reduction.
I never had the groin pain, mine was a little farthur over, where my thigh connected to my hip.
Could the pain possibly be a swollen lymph node, in that region. We tend to get little inections, on these PI's sometimes.
itchy rash, I also had the "creepy-crawly" eeling. Have you tried the Hydroxizine pills, for anti-itch? They might be over-the-counter in Canada, but prob not, I got a perscription.
It sounds like you should stay very close to your
home, and only short drives, i you are feeling htat spacey. I actually had to stay very close to home, to remember to take the PI exactly every 8 hrs.
I had my hip pop out, and could no longer walk, around week 12, at week 14, my knees popped out...I was pretty much ready for a wheel-chair, I couldn't walk. When I had my ribaviran reduced, all symptoms got better. But you should be Undetected, beore a riba-reduction.
I never had the groin pain, mine was a little farthur over, where my thigh connected to my hip.
Could the pain possibly be a swollen lymph node, in that region. We tend to get little inections, on these PI's sometimes.
Today I almost saw light at the end of the tunnel, I woke up scratching like crazy and when I went to my left leg it felt like a little mouse was just under the skin and went straight down my leg and then was gone, It freaked me out, I still dont know what the heck that was, but the pain in my right side does not seem as bad today, and the itching is not as bad(still bad), I have become very forgetful and everything I do seems like it wasnt real, but I kinda remember doing it, driving somewhere and then coming home seems like I never left, I have always had a clear mind before so I know its the meds, or maybe I am just going nuts, well I feel like I am ranting again, and I cant remember what my original thought was, I guess that today was better, maybe just maybe tonight I will sleep...
Thank you all for hanging in there for me, If their is something I can help anyone else with, please let me know......good night.
Thank you all for hanging in there for me, If their is something I can help anyone else with, please let me know......good night.
I had a terrible headache after my first shot. It was recommended I take
tylenol a couple hours before the next injection the following week.
I'm not sure if the Tylenol worked or the headaches just went away, but
that on happened after my first shot.
I haven't had that reaction since...
Hope you feel better tomorrow.
Reva
tylenol a couple hours before the next injection the following week.
I'm not sure if the Tylenol worked or the headaches just went away, but
that on happened after my first shot.
I haven't had that reaction since...
Hope you feel better tomorrow.
Reva
I was on Incivek also. I had worse injection side effects when I first started treatment. They eased up a bit after awhile. I hope yours do too.
I take 325 mg of Tylenol 2 tabs when I take my injection at night. This strategy get the pain med on board before the pain gets started. Then I usually take another one in the am after the injection. My doc said it is okay to take 1000 mg of Tylenol per day total although I think that is conservative. I have read 2000 mg total (not all at the same time) per day. It is best to check with your doctor to see what is okay for you to take. (Unfortunately, it is the weekend now.)
I also keep a few cold packs in the refrigerator and one or two in bed with me (under the other pillow). I keep my house cold so I don't itch to death so the cold packs are cold even if they are in the bed. But, the ones in the refrigerator are even better. If I get a headache at night I just put that cold pack on my forehead and leave it there (and switch it when it warms up). That has worked for me.
If this persists, I would ask the doc for something stronger.
I hope you find something that works. Headaches can be incapacitating.
I take 325 mg of Tylenol 2 tabs when I take my injection at night. This strategy get the pain med on board before the pain gets started. Then I usually take another one in the am after the injection. My doc said it is okay to take 1000 mg of Tylenol per day total although I think that is conservative. I have read 2000 mg total (not all at the same time) per day. It is best to check with your doctor to see what is okay for you to take. (Unfortunately, it is the weekend now.)
I also keep a few cold packs in the refrigerator and one or two in bed with me (under the other pillow). I keep my house cold so I don't itch to death so the cold packs are cold even if they are in the bed. But, the ones in the refrigerator are even better. If I get a headache at night I just put that cold pack on my forehead and leave it there (and switch it when it warms up). That has worked for me.
If this persists, I would ask the doc for something stronger.
I hope you find something that works. Headaches can be incapacitating.
hi GrammyA
this is a great question that is worthy of its own thread. i would push the post a question button, and start a new thread and include headache in the title. i find that when i get headaches on treatment i am not drinking enough water. other here will have better answers than i can provide so please start a new thread.
eric
this is a great question that is worthy of its own thread. i would push the post a question button, and start a new thread and include headache in the title. i find that when i get headaches on treatment i am not drinking enough water. other here will have better answers than i can provide so please start a new thread.
eric
So I had horrible - mind exploding headaches after the Pegusys shot last night which lasted for hours. This being a Saturday, I knew it would be difficult to find a nurse to discuss it with but I had to try. I do not understand why the Doctors answering service nurses are soooo uneducated about the treatment and were worthless in advising me what I can take to make the headaches better. You would think that since this Doctor has over 80 patients currently on treatment that they would have 1 nurse fielding the calls that knows what is going on...... SO, tell me - what did your Doctors tell you was O.K. to do for the headaches. I am on the Incivek program and just on the 2nd day...yikes!
Thanks heppers!
Thanks heppers!
Here you are!! Hey, I felt terrible, as soon as they introduced my PI (which is Victrlis).
I initially had teeth and gum problems, and had to step up on the brushing, and mild, non-alcoholic mouth-washes...I bought a bunch o them.
I took the Atarax itch pills, every 6 hrs, very regularly, for the systemic rash...and it went aways ater a couiple weeks.
The Incivek is only for 12 weeks...and then you will start feeling better. I treatede my nausea, by eating nutritious meals. An empty stomach seemed to create the nausea.
Can you take off from work, for any o the time on the Incivek?
I initially had teeth and gum problems, and had to step up on the brushing, and mild, non-alcoholic mouth-washes...I bought a bunch o them.
I took the Atarax itch pills, every 6 hrs, very regularly, for the systemic rash...and it went aways ater a couiple weeks.
The Incivek is only for 12 weeks...and then you will start feeling better. I treatede my nausea, by eating nutritious meals. An empty stomach seemed to create the nausea.
Can you take off from work, for any o the time on the Incivek?
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Most people who are being treated for various diseases and medical conditions would not tolerate the drugs that they are taking if the side effects of those drugs were as severe as the side effects of Hep C drugs. They would ask for a different drug that would work for their particular medical condition. We do not have that option. We have no choice. There are no other drugs to pick from. We have to take these drugs if we want to be cured.
The fatigue is pretty common but the degrees of fatigue can vary from person to person and from day to day. Headaches and joint and muscle aches are common. So is the flu like feeling. In fact, there are so many side effects that come and go it is difficult to list all of them. Some of these side effects may lessen as you get further into treatment. Others may intensify.
More than a few people get the rash. It is common, although it can vary in severity. The rash needs to be promptly and aggressively addressed and treated. It can and will snowball out of control and this could jeopardize your ability to stay on treatment and your chance for cure. I would see a dermatologist (on an urgent basis) for your rash. A dermatologist will know what to prescribe and how much to prescribe, something that many other doctors do not know. You need to be on high enough doses of the meds to stop the itching and the rash. Personally, I was on Fluicinonide ointment, clobetesol solution, and Hydroxyzine 50 mg every 6 hours (I am still on the Hydroxysine). Creams and ointments help with itching but it is the Hydroxyzine that keeps the rash under control. Keep in mind, this is a systemic rash, so one needs a systemic medication to control the reaction.
(I found all of the over the counter meds to be completely useless and totally ineffective.)
Watch the gums. See a dentist if necessary.
Aches and pains and headaches can usually be treated with tylenol if it is okay with your doctor. I also keep a cold pack in the bed with me (or in the refrigerator) and put it on my forehead at night.
It would be advisable to see a psychiatrist concerning your depression. Interferon can cause severe depression and if a person is getting depressed, that person should seek the advice of a psychiatrist (on an urgent basis). Antidepressants take a few weeks to get to full effectiveness so it is best to see someone ASAP.
You did not mention nausea but, if you get nausea, bloating, and/or vomiting, ask the doctor for an anti nausea med. I used Zofran 8 mg every 8 hours and that was like a miracle drug. I was very sick before I got the Zofran and withing a couple of days I felt like a new woman.
The flu like symptoms can sometimes be alleviated by taking tylenol when you take the injection. (check with your doctor to be sure it is okay) I normally take 1-2 Tylenol 325 mg when I take my injection and often the following morning. This does help. I have noticed that the flu like symptoms have eased off a lot over the months. I do have to admit, I never had severe flu like symptoms, just fatigue, weakness, headache, muscle and joint aches.
You said you are having problems functioning in daily life. I am not positive what you mean by that, but I do know that the drugs affect motivation, energy levels, concentration, stamina, and just about everything else you can think of. Many of us have problems with getting anything done or with concentrating. I used to get frustrated. Then I just accepted that I was not going to be able to function at my pre-treatment level and that made it easier to deal with. I did try to do something positive and constructive every day, even if it was small (ie one of the following: dishes, laundry, sweep floor, grocery shop,do the bills, OR clean bathroom). I found I could not read a book because I could not concentrate, so I am not reading books right now. My memory was horrible so I had notes and reminders all over the place as well as pill organizers and alarms and timers to keep the meds on track. It helps to just acknowledge that the meds are causing brain fog and compensate with the reminders and memory aids. Accepting that these are side effects makes it a lot easier and less frustrating.
You will most likely feel considerably better after you have completed Incivek. I know I did, quickly. I still had side effects, but nothing like while on Incivek.
I am currently in week 44 of treatment (of 48 weeks) and for whatever reason I am actually feeling pretty good. I noticed that I felt 1000% better once the nausea and bloating were under control and once the rash and itching were under control. In my opinion, getting those side effects under control is crucial. They are systemic reactions/side effects and they affect more than just the skin or the stomach. So getting them under control is crucial to feeling better overall.
Get the help you need for your side effects (prescriptions if needed).
Lower your expectations of yourself and what you can accomplish on treatment if necessary.
Concentrate on treating and getting through treatment. That is the most important thing at this point. All else is secondary. (I did not vacuum for 6 months, LOL.)
Come here (to this forum) for support and answers.
Hang in there. It may seem like a long time until you will be finished, but the weeks go by fast and soon you will be on the downhill stretch.
You can do it.