Hep C Discussion Forum

I also used the Desitin and witch hazel, soaked in tub. And i was on Victrelis, which is not supposed to give you that SX, but it did. Or maybe it was something else, i just grinned a beared it. At EOT you will be glad you put up with these SX. Hang in there bud..

Thanks Cinnamon girl for the side effect managment.  I have been informed of the side effects, but it is nice to be reminded that I'm not going crazy and that it is not all in my head.  Everyone has just been and amazing source of encouragement and information.  An acquaintance of mine just passed away last week from Hep C....47 yr old.  Did not know she had it until it was to late.  Makes you appreciate the tx and side effects....no big deal!!!!!!

Try witch hazel! Pat it around inflamed area. Anal itch is so painful and use
Butt paste to protect your skin from the
Posion coming out that feels like fire!
Sleep without underware to allow air to help
heal the area. Sleep on your side with your leg over a pillow. 
It was a rough time and no way I could have
Worked but it was worth it. I achieved SVR:)

I`m bringing this `Guide to Side Effect Management` link to the top of the thread again, as it contains a lot of useful tip and strategies...

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Treatment_Side_effect_Guide.pdf

Hey everyone! Just started my 10th week of treatment. I got a bad infection or something to that degree in my mouth a couple of weeks ago. My bottom back gums were swollen and very painful. My doctor prescribed me a mouth wash to help, but couldn't do much else for me. Thankfully, keeping my mouth extra clean helped and now it's starting to clear up, but apparently due to low white/red blood cell counts, mouth sores are common. On top of the low white/red blood cell counts though, my zinc and B2 levels were down, so she strongly suggested I start taking a supplement. I found woman's one a day vitamins have both plus much more. They also have a men's one as well. Just wanted to share this. I know we can get all the help we need when it comes to managing our often painful side effects. Good luck everyone, remember, this too shall pass. And even though I don't know any of you, I know what you're going through and I at least take great comfort in that fact. We don't have to go through this alone!

-Sarah

Hi cindy, were gettin close. My riba was also reduced to 800 and peg to 135. Peg back to 180 again, he kept riba at 800. My Hemoglobin is 12.4, white count is 2.0 and platelet is 57. I just do what my doc says to do. Try not to worry and good luck.

Hi Cindy,

At Week 41, you must be sick of Rx. What is your Hb, WCC and platelet count? The dose of Victrelis can't be changed, and you really don't want to drop the Peg. In the USA, the practice is to drop the Riba and add Procrit if the Hb falls much below 10. At 41 weeks, my Hb was 8.1, WCC was 2.3 and platelets 46,000.  My doc didn't want to reduce the Riba (as I am cirrhotic) so I stayed on 1,200mg/day for the full 48 weeks. My Hb dropped to 7.1 by EOT and platelets were 28,000.  I'll know next week whether he was correct!  Really, the WCC and platelet count is not a great concern- the exhaustion is due to the low Hb. There have been many members who achieved SVR after reducing their Riba, so take your Doctor's advice. Good luck, you're almost there.

Having a doctor that manages these horrible side effects is key to staying on treatment!!!!!

if your doc or his staff make light of it you need to find a new doctor.

Hi Cindy, how are you feeling now? The fluey feeling following the shot usually goes away within the first couple of days or so.  If you`re still getting fevers it`s probably best to see your doctor as you may have an infection of some kind without realising it.  You could take something like tylenol (sparingly) to keep the fever down.

Best wishes, Jill

welcome password

Sorry to hear about your doc.being so uncarring, that would suck. Pharmacy would not do that,they want every

script they can get. You have every right to find another specialist. I got lucky with my docs,I got a team of 3 treating me and take care of me well. They will call me at leat 2 times a week to check up on me. being fatiuge is normal and everyone gets side affects of some sort. Be careful of your blood counts, if your red cell go down to far your legs will feel  like led and you will not be able to do much at all..been through all that crap.  Sounds like you got one of those doctors that treat you like a number, I wish you the best of luck.Keep on treatmet,you;ll get through it.

I'm with Dave. I think the doctors are not callous to our discomfort, they're just tired of hearing about stuff they can't do anything about. They know we are miserable. But as long as there is no danger to our lives, they "let it ride". I have dragged myself into the office, collapsed into a chair, groaned as I got up to head to the examination room, only to be told I am fine, everything is great, keep up the good work, attaboy, see you in four weeks. I stood there a minute staring into space, mumbled something inappropriate, and staggered out the door.  But I still love my doctor and nurse. And my lab guys. And my pharmacy. What a great team we make.

Alan

password wrote:

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Hi all, I'm new to this forum and I am in week 5 of tx, dual therapy, genotype 3, expecting 24 week therapy, if I can stand it. My 1st week of TX I called my treating specialist and told them of the bad side effects I was experiencing. The Dr conveyed thru his nurse to drink plenty of water, I told them I was drinking plenty. My blood is tested bi weekly and my blood numbers continue to drop. I can barely drag myself off the couch and I am achy and grouchy with zero energy. I just returned from the DR and my viral load, which was at 10 million before treatment is at 1600 now. Yayy. The problem I'm having is the Dr's I'm seeing act as if I'm complaining about side effects, like the exhaustion is all in my mind, yet every person, except the Dr's and the peginterferon makers know the side effects are terrible. I have read 80 to 100% of those in treatment experience fatiuge and they act as if this is unusual. I actually raised my voice to the NP today when she told me I might be one of the FEW who experience side effects! WTF? I am totally confused, why would my DR's office choose to UNDER TREAT my side effects and act as if I'm pretending? Do the pharm reps tell them to ignore patient complaints of fatiuge? Should I switch liver specialists? I don't know if I can continue treatment without some relief.

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 Welcome to the forums, I'm sorry to hear that your medical people are being unsympathetic about your side effects; I assure you they are real enough.  Fatique is my main 'cross-to-bear', and is common to most(if not all) on treatment for hep C.

As for water, getting enough makes a huge difference in the way you will feel.

What IS enough water?   3 liters is a good start, more may be helpful(if you don't drown first!).  

Here are a few tips from my experience:

Keep the area real clean after each trip to the bathroom. Use Witch Hazel type wipes (Walgreen's has some very good ones) to treat the irritation. Keep Prep H suppositories on hand and don't be afraid to use them. Switch to tub baths, not too hot, and soak as long as you can. Pat dry, do not rub with a towel. If nobody minds, sleep with no PJ's or underwear to allow plenty of air. If you are able to predict the next trip to the bathroom, use a suppository a half hour before to make things less painful. Other than that, be sure to get that 20 g. of fat with each dose, to allow the drug to absorb better and leave less in the intestines. And of course always drink all the water you can tolerate. I occasionally had to use diaper rash cream when things got bad on the outside, but that was not often.

Good luck. It's not easy, but it works most of the time, so it's worth it.

Alan

yes i read your history and realised i havnt gone through anything like you have and my heart goes out to you.your strength is amazing.xx

hi jill and thankyou for the warm welcome yes i think i have the type 3 and am on 6 months of treatment,yes i think your right about everyone being different and cope with things in different ways and im sure some ppl need ad to help them with their moods.before i started treatment i was having panic attacks left right and centre and have been suffering from claustrophobia very bad so for me when they they told me i could get even more panicky i thought my world had ended, i didnt mean to be negative about ads just meant they are not for me really.

ha the drinking thing well i havnt decided if i will have one yet but was given the go ahead from my nurse at the hostpital who said id its a one off then it should be ok,luckly my liver is fine and im afraid to say i got myn through taking drugs when i was 17 i was off them by 18 but have only just found out i have hep c.my past came back to haunt me in a big way im 43 now.will put up a pic at some point.

what type do you have and how long have you been on treatment? x

hi to all i was diag last nov 2010 and have just started treatment, im nearly on week 4 of 24 and the worst thing i am finding is fatique and a few stomache cramps but no pain as such. for me i wouldnt

taking anti depressants your body and head is going through enough without adding more meds.im finding it hard but still going to gym twice aweek once on my own(thats the hard one) and once with my friend and trainer who pushes me, im also doing yoga at home a few times aweek which calms and helps with moods and ofcourse eating heathly lots of brazil nuts and coffee help with side affects(decaf in evening).

most of all im missing having a glass of red wine ha but iv been told by my dr a couple of beers over xmas as a one off wont hurt.yippee

karen england

2/11/2011

Nice one Steff, am sure this will be very useful for folks on tx. 
Hxxx