'evening' out of side effects

[Rattler]

Hi all.
This subject is, perhaps, a bit silly as we all differ so much with the drugs we are taking.
I am, however, curious about other members' experiences with sides and how long into the treatment period they last.
It is particularly difficult because there are four drugs involved.
We are all on the Inter/Riba but some of us are on one protease inhibitor and the remainder (including me) on the other one. Victrelis.
My experience so far is as follows.
I today begin week 11 (ie week 7 of the triple)
For the first 4 weeks I had almost no sides. No 'flu-like symptoms with the injection at all.
Then, about 2 weeks into the victrelis, I had terrible itching, controlled with lotion. This lasted about 10 days, and then receded. However in the last two weeks this has virtually disappeared. I also had a period of about two weeks when i felt just terrible and couldn't be bothered doing anything. This has passed now. I am aware of tiredness with sudden exercise, but I can deal with it. At present my Haem is 9.8.
My sleeping is not great but I manage.
I have a positive attitude as much as possible.
I find sometimes that I am a bit short-tempered, but this is rare and passes.
I am not looking for a pat on the back. ii weeks out of 28 is still early.
What I am really asking is whether this means my side effects are evening off/becoming stable, or can, at anytime,
new ones or the old ones reappear with a vengeance?
Sorry for the long-winded question guys. Thanks to all at this site. It makes the whole thing bearable.

[Nookster]

Hey Rattler,

Great thread,  when I came to this site I was looking for someone who felt like me in regards to side effects.  It helped tremendously.  I'm into my 6th week, and 2nd week with Victrelis.
1st week just a low grade headache and I was still going to the gym.  2nd week a kind of dizziness kicked in.  Not vertigo but an unstable feeling that would escalate into a kind of anxiety.  Noise, lights, banging and movement at the gym made me stop going.  3rd week I added fatigue to the mix and would get seriously winded doing the smallest things.  4th week headaches went away. 5th week energy started coming back and dizziness is more manageable.  6th week still a little better and nothing worse. The Victrelis seems to have no sides.  Overall a little itchy but not bad.  No sleep problems or mental issues at all.  Also when I did my 1st shots on Friday I would feel kind of flu like on like Monday or Tuesday and that has gradually moved up each week to were it is now the same feeling on Friday and Saturday.  Hope this helps others compare notes.

[Nookster]

I forgot to add one last side effect for me.  Joint pain,  especially in both rotator cuffs in my shoulders.  Maybe from years and years of abuse in the gym.  Also a little in my hips.  But at 59 years old some of this is to be expected.

[Rattler]

Nookster,

you seem similar to me, so far at least, with minimal sides.
I am 5 weeks 'ahead' of you.
I am also 59, so will be interesting to compare notes as we go along.
The shortness of breath side is of course 'normal' as everyone gets a depression of their Hb.
Many of the other sides, such as itchiness, rage, anxiety, depression are completely variable.
As I said, I just am a bit worried that I become complacent about how I feel, and then suddenly a new side will come along and clobber me!
One day at a time as so many have said.
For me, the most important thing and advice I could give anyone is to keep oneself busy mentally throughout the day. This works for me anyway. I make a plan each day and stick to it.

[thesame40]

i am on the triple w/purple pill. all the above for me is dead spot on. I am on week 12 and NOT loving life. Horrible but manageable rash the moves when it wants to where it wants. Mental and emotional states very slippery slope there. Applying for food stamps, public assist, ssi , para transport(public but private if disabled). so I am 53 trying to get my life in order while treating for hep c , and it's got me going in circles. The mind on triple therapy is all messed up..i can't remember anything.

[sunny2day]

I'm on Interferon and Riba (Geno 2).  Am feeling very tired as time goes by ~ this is my 5th week.  Running a fever every day 99.3 ~ 100.3.  Don't know if I should  be taking Advil or Tylenol on a regular basis for this so I don't. 

Would love to get into the gym at least twice a week to be around people but the thought of driving 20 minutes each way is a turn off, would rather do a little light exercise at home.

Feel achey a lot, am doing a little light yoga to help.

I'm mainly bored, live alone except for the cat, feel pretty isolated at times.  Was having headaches and didn't feel like reading but they reduced my Riba so the headaches have backed off and I'm reading more.

Don't know how much I should push myself to exercise?  Really, just want to sleep a lot of the time.

Glad you started this thread, I was wondering how others were doing........

Hang in there all!  Better days are coming!!   

[Nookster]

thesame40

As soon as you get your assistance worked out that should be a great stress reliever.  You sound like you've got this under control.

sunny2day,

Once I realized that the gym wasn't an option for me on this tx,  I sat around a couple of days then just laced up the sneakers and hit the front door.  I try to walk atleast 1 mile each morning and its really been a great help.  Hopefully I can add another mile in the afternoon soon.  You really seem to be doing great from the sound of your sides at 5 weeks..

[Blindie]

I'm on the Incivek, tx,. I have good and bad days. I take my interferon shot on  Friday and usually feel  bad the next 2 days, chills, nausea, headaches. Because I'm real anemic I have little energy, but on good days I go to Yoga, shopping, etc.
I often have the feeling of needles pricking me all over. From the very first day I had and still have a very dry mouth and eyes.
I had a scare with thinking I had a heart attack but I checked out fine. For me this is like a roller coaster ride. I 'm  not the person I used to be.
I hope we can get my anemia under control.

[Jeano]

I have to agree that we are all pretty much in the same boat.

I am 50yrs old, on treatment wk 14 with victrellis.  I feel like life is being sucked out of me turning me into a fragile 80 yr old woman.

Right from the beginning of treatment I was cursed with all the sides, fever, headaches, muscle aches, fatigue, dry eyes, dry mouth, weakness, dizziness, nausea.
Things have mellowed out some but everyday can bring on a new surprise. I am mainly just so tired all the time.
I did become anemic and on my second shot of procrit.  I am hoping this brings some life back into me.
The itching has started back again....this time worse and on more parts of my body. I even notice bruising in spots where I am itching.

I am tired of being tired    and feeling sick.....not sure how much torture this body of mine can handle.  I just like all of you have to take each day as it comes.  I so look forward to finish this treatment with success and get back to a healthy life.  This sure have given me a wake up call and will forever change my life.

It also has taken a mental toll on me so my primary physician has me on Prozac, and Xanax which seems to help with riba rage   

[sunny2day]

Nookster, I've been trying to deny it but have to agree that the gym isn't going to work for me while on tx, might as well bite the bullet and put the membership on hold.  These days, I'd much rather walk around my neighborhood or a park, why fight it!  I'd had high hopes for getting to the gym on a regular basis but I can do just as much (or as little) at home.  Thanks for your response. 

Blindie, I'm sorry you're not feeling well and hope they get your anemia straightened out soon!  Hang in there!!   

I just like all of you have to take each day as it comes.  I so look forward to finish this treatment with success and get back to a healthy life.  This sure have given me a wake up call and will forever change my life.

Me too, Jeano!!  I've always felt pretty bullet proof in terms of health ~ this is a real wake up call!  I've been feeling like I'm being a wimp and should push myself more but I'm going to lighten up on that and go with the flow.   Good luck, I hope you start feeling better!

We're all in this together ~ am so glad this website gives us a chance to connect!  Good nite y'all!   

[MidKnight]

Ok, gonna jump in. Dont know what the norm is. I start my second week tomorrow. Doing the peg and riba lead in. Before treatment i had no symptoms, saying that, i worked on my feet on a concrete floor 27 years. My knees and legs bothered me some but i managed. I just attibuted that to the working conditions. If i had not moved my health care over to the va i would never had known. After i lost my job i qualified.(i was making too much) . I have had a small headache the first few days. That has since subsided. Thought my liver was talking to me a little bit today, never troubled me at all before. Hopfully it wont be too bad. Nice thread, keep it going. I will help.

[Blububbles]

Hi all, I thought would chime in since I can relate to many of the statements on this thread. I am into my 8th week with Boceprevir. I go for labs this friday, but I can tell my blood counts are tanking becuse of the constant fatigue, shortness of breath, racing heart, etc. In addition, every afternoon I run a low grade fever until I go to sleep, lol, woohoo! And on top of it all I am a go, go, type of person who tends to over do it...jus a little bit sometimes. Talk about feeling 90! That being said, if it gets bad I am prepared  to crawl into bed and stay there until its over, lol. In the mean time I find I watch a lot more comedy these days, stay away from things that make me anxious, and repeat the following daily...four more months, four more months, just four more months...Won't it be grand when it's over? Hang in there kids

[alice]

What I am really asking is whether this means my side effects are evening off/becoming stable, or can, at anytime, new ones or the old ones reappear with a vengeance?

Rattler, I have found that-- for the most part-- the side effects do sort of even out/stabilize. That, or you just get used to it. Honestly, I have found that major side effects like anemia and neutropenia (of necessity) tend to get sorted out/managed within a few months. Less serious side effects like headaches, fatigue, muscle aches, and intermittent nausea tend to persist as long as you are taking the medication(s) that cause them. I've not had too much trouble with rashes but it seems like rashes tend to pop up fairly early on for people who get them. Once you get a handle on side effect management, tx gets to be a real grind and the longer tx goes on, especially towards the end, it really gets to be more of a mental battle.

Now that I think about it, there is one serious side effect that can definitely pop up later in tx and that is depression. Gotta watch out for that and don't take it lightly. Oh yah, I've had thyroid problems persist throughout tx before-- first I was hypothyroid (0-3 mos), then hyperthyroid (3-7 mos), then back to hypothyroid (8 mos till the end). That sucked!

Of course, there are exceptions to every rule but it seems fairly unlikely that you wil have new, serious deal-breaker type side effects popping up later in tx. That's not to say you won't have good weeks/days and bad weeks/days... but, personally, I'm not expecting any big surprises.

alice

[Rattler]

thanks so much to all who have replied to this thread so far.
As I said already, the tremendous individual variation and degree to which we all react to the meds, makes predictions about evening out of sides so difficult.

Jeano, it is the same with me about the itch and the dry eyes. I have had no itch for several weeks and then suddenly, one night while reading I started scratching my elbows and had to reach for the artificial tears. Amazing!
The next day it was gone.

Alice, I agree about needing to watch out for that 'low' feeling creeping in. I am able to keep a very positive attitude mist of the time, but there are certainly some bad hours, which suddenly can disappear, with a telephone call or one's partner coming home.

I mentioned this briefly before on another thread but would like to repeat it because it keeps me sane and I recommend it to you all, regarding the time of treatment left.
We all function on reward system in our brains, and shorter term reward/something to look forward to is better.
I am in week 11 of (probably) 28 weeks therapy.
But instead of having in my mind:- 'great...only 17 weeks to go", I break it down in my calendar. So at week 9, I said "one third over (almost!)
In 3 weeks I will be at 14 weeks and that is the magical half way through point.
on the 16th Jan on the calendar is a big red mark saying "two thirds through"
Sorry, if you think I am stating the obvious, but it really helps me through this thing.
End of lecture!
lol

[thesame40]

5 dayz of purple insanity left( i will not be finishing the extra 3 3/4 dayz of my meds. Yes there were time when i had had enough, and refused to take a dose or 2/3.) So when I counted u my last week there was extra. My itching has never been worse.I have been pushed to a place no human should ever go.Yes were are a strong, determined lot, but this is something from another world. All the fat or not enough fat ,i can't figure this S**** out nor do I want to. I just want it exorcised from my body in a timely fashion. I would rather have the anemia than the terrible twitch and itch. Yes becarful i will get my wish we all get the anemia.