Should I cut back meds?

OK, only 29 more days and 4 injections to go.  This last part of tx is H*ll.  Just spoke w/my cordinator at the institute about all these awful sides from head to toe.  Headache, creepy scalp (must be the new hairs growing in), teeth hurt, creepy crawley skin, joint and muscle PAIN, back pain, fatigue, real bad flu feeling, think strep throat is back, low grade fever (99) yesterday (that was a 1st), have a sore that won't heal on my hip (where you would get a shot area) and the list goes on.....

Anyway go Wed to clinic, coordinator said we could cut back on the riba and mg of peg for this last month and see how I do.  I could refuse and continue to feel like this or do the med reduction.  Think it is advisable to reduce meds this late in tx?

1A/48 weeks (counting down days now)
2 log drop at 4 weeks, neg at 12 weeks, 24 weeks (no 36 week PCR) HGB 10.5 2 weeks ago
2 Riba in the morns, 3 at night (he suggested cutting back a pill or 2
180 mg Pegasys 1x week (he suggested cutting back to 130mg)

Thoughts on this?

Thanks,
Fisheress   (Don't feel good)  :(

[mikesimon]

I'd watch the fever closely and have the soar evaluated but I would probably stick with your dose if it is tolerable. I know it was misery throughout my TX and though people say that you acclimate over time I never did. Reall, what does anyone know about this except Type 1s have a difficult time clearing and full dose is as yet the best way to get there. I wish you the best. Mike

[NYgirl]

Try and hang in there so you don't have to second guess later if something happens or you will just be so full of remorse you won't be able to handle it, you will 'what if' yourself to death you know?

On week 43 now (I think) I find that I feel much worse on shot night than I did in the beginning myself. I don't really know how I'll make it to 72. That is killing me and not so softly ... but one way or the other after my appt. on Aug 5th if Dr. J says go then I go for it.

We have to do what we have to do, end of story.  Don't give up - not this close. (Sounds so easy to say doesn't it?) But we UNDERSTAND

[Stvski80085]

I would try to finish the treatment at full dose if you can stick it out a while more.  I have always heard that staying true to you meds helps with svr.  Thats just my two cents.  I hope you get it all worked out and definately have the sore looked at.  You don't need any infections right now.

Take care,

Steve

[friole]

Why does it have to be so dang hard?  If they would just give you some Procrit like you need, the rest of the symptoms just might be a little easier to handle. Like Jim, I don't think reducing your riba by a pill will make that much difference in treatment outcome, but who really knows?  I still think both your white counts and your red counts are low for you.

The low grade infection is an indicator that maybe your system is not strong enough right now to fight infections -- and you think the strep is back?  Often times the one round of antibiotics is not enough.  When I got sick in March, I called the doc before the antibiotics were up to get another round. I think maybe you need that second round too.

Any chance your regular doctor will rx Procrit?  Since it is not against the Ideal Study protocol to use the rescue drugs, I don't think you would be going against the study to ask.

Hang in there Fish,  only 4 more to go
frijole

[Fisheress]

Thanks for your reply's.  You are right nygirl, I would "what if" myself to death.  I want to make sure I get every lil drop of Interferon and Riba in my system I can.  I swore from the beginning that no matter what, I was gonna finish this tx to which I will but never thought of dose reduction this late in the game.  I was talking with my sissy who is a 3A, she does the same amount of interferon as me but 1 less pill then me.  She was about 120 lbs at the beginning of tx and now weighs the same as me.  I was about 130 now 142.  Is the Riba weight based?

I took a vicoprophen at noon and seems to have helped w/the pain for now.  I hate taken them but it works.  Can only take one a day although allowed 1 every 4-hours, keeps me awake at night.  So suffer til noon, suffer at night till I fall asleep and suffer again in the morns untill I break down and take it again.

Whoa is me and everyone else having sides.  Ya know I did really well at the beginning of tx, thinking this is a breeze.  But I have to tell ya, the sides are just DREADFUL 24/7 now!

jmjm, yes perhaps a reduction in the riba and keep the interferon at 180mg.  I am sure they will go along with that.  I am going in on Wed and we will decide then.  Perhaps just a 1 pill reduction will help......

Thanks ya'll
Fsiheress

[jmjm530]

I was told I could cut back or even eliminate the riba toward the end of treatment but didn't. As I understand it, keeping full dose peg is more important as it has a much shorter half life. Since you treated already for 44 weeks, one could make the argument that by this time you probably either cleared or you're not going to. One could also make the argument that maybe you will need the xtra four weeks to SVR. No easy answers unfortunately with treatment. Your doctor's plan sound reasonable but again I would personally cut down the riba that late in the game as opposed to the Peg. But then again, I'm not in your shoes and don't know how bad you really feel. Only you know that.

All the best.

-- Jim

[Bill1954]

Tough one to call at T-minus-four-and-counting. As mentioned above, you *just don

[beamishboy]

my encouragement to finish at full-dose echoes most...,but..i think pain meds make it bearable,indulge to the extent that Feels better!...stomach&behavioral issues aside-do whatever it takes to finish in Grand style:nap when ya want; use all & sundry perks ;ask forbearance & help from family,friends......I know that trx does Not get easier and i am not in your shoes but i wish you all Strength & Good Luck

[Snookmiester]

I wouldn't cut back, I'd just grit my teeth and ride it out. The closer we get to the finish, the more the anxiety and need to get off the meds increase. I agree, that if you lower the dose and the odds do not turn out to be favorable, you'll kill yourself with the what ifs... Give it your best the first go round!! Best of luck and I hope the sx's ease up..

[returntosender]

I found the last four shots really tough.  I so wanted to be done and didnt want to keep adding more medicine to my worn out body.  But to be very honest with you so much of the end game is psychological that it really doesnt pay to stop early.  There will be continuing sides.  It takes a while to feel better.  In some respects it was almost easier on tx than off.  I had less expectations of feeling better.  

When I finished I wanted to be better immediately.  Everyone else expected it as well.  It didnt happen.  I got an immediate emotional lift but I am still experiencing side effects of treatment and I finished 6 weeks ago.  I have good days and bad days.   I was in the ER last week and NEVER had to go there while on tx.  Dont get me wrong, life is a whole lot better and I am very happy to be completed but I am very glad I finished every drop and gave myself the best chance at clearing.  My stats were very similar to yours.  In my 44th week I felt that finishing was only a dream.  You will finish but be prepared for a new journey.  Dont expect too much too soon. Dont expect for all the sides to immediately cease.  

Also, be careful with the vicoprofen as it can turn against you towards the end of tx.  It affects digestion and is tough on stomach especially after being on tx so long.  It can affect sleep and I also think it can really affect mood as well.  When I was on tx and felt the worst, in many cases it was from something I was doing rather than something the combo was doing - like the time I was taking Phenergen but instead of taking one teaspoon was drinking it out of the bottle.  Talk about a zombie!  A thousand ribas could not make you feel worse than that!

[jmjm530]

Some here have posted feeling a difference very quickly when cutting down on the riba. While it has a very long half life as Bill suggests, for some reason people seem to "feel" the difference sooner but not sure how scientific that is. I'm sure your doctor knows better in that regard. I dropped my riba from 1200 mg to 1000 mg/day around week 42 because I wasn't feeling very well and my NP said I only needed 1000mg anyway. I upped it a week later when I felt stronger. Harder/longer will always give you the edge on the virus but also an edge on side effects. Again, no easy answers.

[sunspot]

Echo what RTS said. The last 4 weeks were the worst but I knew I had to stay the course because of the "What if" factor.
Best to you, Dana

[Fisheress]

Thank you all so very much for your replys.  I have had time the last two days to reflect on my tx, before, during and now the the current situation along with my future after tx.

I do not want to have the what if's, I want to stay neg with no relapse, therefore I am not going to cut back on meds if at all possible.  I have a feeling though after speaking with my coodinator on the phone and complained about the awful sides, they may decide before I get to the med center tomorrow to go ahead and cut me back.  I suppose I was to hasty in my  call to them.  If I play it down tomorrow and convince them I can do this, perhaps I may be able to win and continue fighting this virus this last 4 weeks at full dose.  Yes the sides are DREADFUL and a new one everyday.  Don't EVEN want to mention to them my horrible dry right eye that is just killing me!  They have sent me to the eye doctor for this previsouly and she gave me lubricating drops which I am using now altough it is very painful. Just had breakfast, took my Riba , now going to see how this morning goes.  If I continue to take the vicoprofen during the day to get me by, I will just have to deal with what they do to me after the tx.  Right now, anything to get by.

Again thank you all.........Everyone of your responses have been oh so HELPFUL!

Luv,
Fisheress

[sfbaygirl]

Sorry to hear you feel so badly. I wouldn't worry about the pain meds at this point. You are almost done. If it makes you feel better, don't feel bad about taking them. My hemo told me that QOL is important during tx. He told me that if maalox helped, even though it cuts 14% absorbtion, he would rather me feel better. I have better antacids now, so I am not worried. But I liked what he said.

I agree, I wouldn't cut the tx drugs. I too stuck them out when the dr. wanted to cut me down too. I am sure that anemia isn't helping either. Make yourself comfortable and take the pain meds. I did my first 12 weeks and was UND. I was sure it would have some effect, but it did not. YOu are near the end, don't make it a tramatic experience if you can get some relief from the sx.