help with side effects

[desperatechezzzoo]

Does anyone know first hand how i might feel from pegylated interferon and ribavirin combination treatment...Just found out that my hep c i got mid last year has not cleared on its own so i will have to have this treatment. I am single and have 2 children aged 5 and 12. I am scared that  i will get pretty ill and this will effect my ability to look after them, I dont want that as my drug use has impaired me for so long and i finally have that totally under control and am now upset that i once again might not be at my best.....Please help me get a grip on whats going to happen to me while on this treatment...thanks

[Rosebud41]

I would do everything to prepare for things not going easy.

Someone in the forum can post a shopping list of things you might like to have around.
(If I can find it I'll post it or the link)

Once you've  done all you know to do to start expecting  things to go well.

I have only finished 12 weeks and that hasn't been nearly as bad as I was expecting,

But, there were members like nygirl, Jim and many, many others who helped  me get through the 18 months (scared!!!)  before I got to what is considered the best doctor in my region.  (I had a couple of toads at first)

I don't know what the next several months are going to be like, but try to be positive even when it's hard to do. That's what I'll be doing!

Maybe you have a good friend in another town who can support you with a few cell phone calls. I have a real good friend who calls me a few times a week.

In my situation the virus was undectable at four weeks and confirmed undetectable at 12 weeks.

I'm expecting things to go well and if it gets difficult I know the forum is a great group

of "friends."




Rosebud 41

[alagirl]

It's so hard to predict how different people are going to respond to treatment in terms of side effects.  Some people seem to go through with few problems, and others have varying degrees of side effects.  There are also times during tx when you feel better and times you feel worse.  I have seen many people with jobs make it through, and many folks with children also.  You have to do what's best for you sometimes in order to be there for everyone else.

[cb867]

I just had my first shot of Pegassist last night. I have now had all 4 ribavirin pills and so far I don't have any side effects at all yet. If I do hopefully it won't be too bad. There is hope to have it pretty easy. I will keep you updated. Also I am type 2 only treat for 6 months Good luch with your tx

[Bill1954]

I see; you’re in a tough situation. I wonder if you could somehow invite your best friend to the doctor’s office with you so he could educate her about this disease. There are many sites online that you could cite and help her understand that this disease is only transmitted in the presence of blood. You can always suggest she ask questions here as well; she can use your sign-in or create her own if she’s interested. In fact, she can write me a private message and I’ll be happy to respond. In the meantime, try to relax as best you can, and again, a warm welcome to you—

Bill

Ps- I like your knickname :o)

[desperatechezzzoo]

Thank you for your support. I have type 3, which apparently i have 80% chance of clearing with the 24 week course of treamtment. As for support I have my mum but am too scared to tell anyone else as i do want to alienate them as most people are ignorant to this disease and just get scared of it. I dont even want to tell me children. My 12 year old daughter has just her father to a motorbike accident last month and cant tell her as i dont want her to worry about me. My best friend has a 6 month baby and im scared if i tell her she will freak out and not let me near her or her baby who is like my niece. we are very close and i need her. It is churning my stomach worrying wether i should tell her or not. I know i should but dont want her to become distant out of fear for her baby. Thank you everyone also for your support on here you are all a god send. couldnt do this without you.

[chuckles333]

What the doctor says about tylenol. Ibuprofen and ASA can mess up your labs.

http://www.medhelp.org/posts/Hepatitis-C/pain-med/show/557747

[leftcoastman]

i was told to NEVER take tylenol. it is toxic to the liver.  you should do some online research and ask your specialist.

from my extensive experience, the side effects can be mild to that of severe flu symptoms (without the fever), muscle cramps, headaches, nausea.  the side effects typically come on within an hour of the injection and can last for days.  Since I was part of an experimental group, from what i was told, the greater the side effects, typically translates into a lesser effect of treatment.  do some internet research and ask your specialist.

I went through interferon treatment three times.  the first was when i was a study group when it was experimental, interferon alpha 1-a, in the mid 1990's. failed the treatment.  then, in the late 1990's i underwent the next interferon/pegintron treatment.  failed again.  then, in 2003/2004 i underwent the same treatment you are considering.  YES, i was an only parent of 2 small children while i did this.

CHECK WITH YOUR SPECIALIST - THE EFFECTIVENESS OF THE TREATMENT FOR THOSE WHO FAILED PRIOR TREATMENT IS LESS THAN 25%

not only did i fail, six months after that i developed diabetes type 1, do not fit the profile of adult onset diabetes, am HWP and had no risk factors, kaiser doctors called it 'rare' then about three months after that, low blood pressure the kaiser doctors called it 'rare'

be cautious and ask many questions.  check the numbers, the risk may not be worth the reward.  most people who have hep c alone do not die of the disease.

[chuckles333]

Wow. It's rough I know. We got high because it felt good and now somebody's come to collect for the fun we had. I'll never tell you that treatment is easy. Even with minimal side effects it's a very unpleasant and invasive thing. Injections, constantly eating capsules, blood tests, it's all unpleasnt to me. I started out with hardly any side effects at all, a little chill the night after my shot and a bit of headache. I'm now close to EOT and my side effects have worsened somewhat. I get the chills constantly unless it's really hot out. I have an itchy rash on large areas on the bottom of my legs, patches of dry skin on my thighs, upper arms and back of the neck. I get backaches and headaches that last for a couple of days after my shot. The rash is pretty well controlled by cortisone cream, the achiness by tylenol extra strength and the chill by dressing warmly. Will it be a breeze for you? Probably not, but then you never know. It really varies greatly from one person to another. Will you be able to handle it? You know you will!! Don't be afraid to look for support anywhere you can. This may not be your best place but it's a darn good place to look.

[FloridaMouse]

I did 120 total weeks in 3 years.  I worked the first time I treated but admit I struggled.  Be prepared to feel pretty dern crappy and be greatful if ya don't.

Mouse

[jdwithhcv]

I would not count on treatment being a breeze.  Perhaps it will be, but you may want to prepare yourself for some common side effects.  For me the worst was anemia.  Many people on this forum have anxiety and depression (induced by the interferon) and have to take anti-depressants.  Some people lose their hair, have skin rashes, thyroid issues and fatigue.  It is a long course of treatment and it helps to have an understanding family, a job that is flexible and lots of support.  

Good luck to you.  If you keep coming here with your questions, people here will help you all they can.

jd

[franke566]

If you were strong enough to stop using ...the Tx will be a breeze.  Your 12 year old will want to help Mom, so don't feel guilty if he or she does.  Depending on the kind of work you do-it is un-clear if you work -other than raising your children-just about everyone posting on this site manage- from all the posts I've read-to get thru just fine.  You will too.

[rita863]

I treated for 48 weeks and I went half days around week 30??  I was lucky to have teenage children.  But as the others said I looked at them and knew I was treating for them!

Best of luck!
peace
rita

[Rosebud41]

I just finished 12 weeks and I didn't have too many problems.

I made to work without too much difficulty.

I found that my fear of the unknown was far more difficult than the reality.

The main issue I have is being  tired.

Hang in there...the road is not easy,but you can make it.

Rosebud41

[nygirl7]

I'm a single mom and I have two kids. I completed 72 weeks on high dose and managed to come to work a full time job every day. I can't say it was always easy in fact sometimes it was damned hard - but I looked at my kids and realized I needed to and just forced myself to do it.

There are side effects but many of the more serious ones to have meds to help offset them.

Make sure you rest as much as you can possibly rest. Including times when you would think you were being a slacker - you have to get as much rest as you can. Lethargy is the most common side for all of us.  As far as worrying about the "flu like symptoms from interferon" I never really had ANY of that until wee 30 and it wasn't nearly as bad as I thought it would be. I got clobbered with other things but worked through them as best as I could.

Ask as many questions as you can think up. The more you know the better your chances to succeed can be.

[Bill1954]

Wow, so sorry to hear about your problems. The side effects vary so greatly from person to person… it’s hard to know in advance how much it will affect you. It shouldn’t prevent you from caring for your children entirely, but it might make things challenging for you.

My personal experience with the meds wasn’t too bad; I managed fairly well. Others report having to alter their work schedules and sleep habits, etc. The thing to remember is that you’re doing this so you can extend your life for your children; this is drastically different than being impaired from drug use… this is therapeutic, and only lasts for a given time.

Can you tell us your genotype of Hep C (HCV)? This will help determine the duration as well as the statistical efficacy of treatment. Are you in a position to take a little time off work, if necessary?

Welcome to the discussion group, and hang in there—

Bill