If tx is reduced after 12 weeks, will sx lesson enough to return to work

[Holly44]

First of all I'm very thankful for all of you. I have been reading in this forum for a few months now, not sure if I should jump in or not and more scared than anything. I don't get on the computer too often as I don't feel well often and didn't want to be someone who jumps in and then disappears on you. I will try very hard not to be like that. I was diag. W/ HCV 11/2005. I had known for a while that something was terribly wrong just by the way I was feeling. I remember telling my husband about 9 months before my diag something is wrong, lots of things adding up. I was going to see a neuro. for carpol tunnel when bld tsts cracked this case wide open. I have HCV genotype 3(thank you lord for the 3), stage 3 liver fibrosis. Was anemic and felt like a truck had hit me long before I was diag. I also had/still do suffer fm multiple migraines. I did shot #11 yesterday and I'm hoping to be und once I'm tstd after #12. If und I'm hoping they might be able to reduce the meds (only if safe of course).  I have been so ill and have felt like such a wus. I started tx on Jan 18th and have worked only 22 hours since.  I'm a team lead and have brain fog so heavy that even if I weren't ill I couldn't lead my team or have all the answers (I run help desk). The last few times I tried to work was embarassing for me.
I go for CBC twice a week for maint shots when needed as the white & red are low and the platelets like to treaten my tx. Dr said we will start aggressive tx the 1st 3 mnths and then if und we my reduce. Has anyone done this and does it help with the sides?
Thank you, Bless you

[can-do-man]

Hello and welcome, has your doctor been giving you anything to help with the sides? I would think it would be better to stay full dose if possible to keep your odds up there. But in a worse case a lower dose would be better then none.

You said...... and didn't want to be someone who jumps in and then disappears on you......... HEY where did you go? i don't see you... Just kidding pop in and out whenever you feel like it. And the best to you

[Alady1620]

Sorry about your diagnosis of Hep c.  Try to keep you chin up as it is not the end of the world.

I totally related to what you said about feeling like a wus.  I have felt the same way but, you know what?  We are not wimpy!  This treatment is hard and it takes a lot out of you.  Don't feel bad for feeling like ****.  Just hang in there.

About the dose reduction...  Personally, I would not reduce my dosage unless I was so sick I needed to be hospitalized.  That is just me tho.  You are already about half way to the end.  You can do it!

Some people say treatment gets easier as time goes by.  Maybe you will be one of those lucky people.  As it stands, enjoy your time off of work and take care of yourself.  Work will be there for the rest of your life and money is not everything.  Your health is more important.

Take care.

[FlGuy]

You should try to hang in there and aim to complete the 24 weeks.  You are luck to be a 3 and you should try to get rid of it your first time - you don't want to treat again.  You said that you get cbc twice a week with injections and wathcing red and white.  I assume you get neupogen (filgastim) for the wbc and procrit (epo) for the hemoglobin?  If that's the case, how long ago did the procrit start?  Many people find that the rebound from procrit can take 2-3 weeks in some cases.  Sound like anemia may be causing a lot of your problems and, for many, procrit is the answer.

[Holly44]

My family Dr helps with the sxs as best he can. I find that the most important meds for the sides are the ones I take for my migraines.  Without them I would not be able to handle tx, the head pain is untolerable.
This process was so confusing to me. Trying to figure out which Dr does what.
The gastro Dr did the colonoscopy, endoscopy and orders the biopsy and writes the scripts for tx but I don't really see him.  I took me a while to figure out just how all this works, in my case anyway.  The gastro Dr sent me to a hemotolist Dr as soon my cbc when down.
I see a thyroid spec periodicly to make sure I'm still safe. (I have no thyr problems}
CBC every Monday and Thursday, full labs every other week, thyroid check every 4 weeks, does this sound right.

[FlGuy]

Also a 3.  Similar to you, I had little contact with the gastro.  Had cbc each week at a hemotologist who would give the 'resuce' drugs right there after the cbc results.  The hemo sent weekly results to the gastro guy.
Has the hemo started you on procrit? When? How much?  Lot's of folks here have erperience with low hemoglobin and the impacts of procrit - lifesaver some call it.

[Dale_Ray]

Good luck with the Count (Dracula). Mine usually inserts till she hits bone and then backs off a bit. Not sure if she is after bone maro or blood. Congrats on the grandbaby. They are so much more fun than children ha! I've got three grandbabies and I swear when this medicine is kicking me around pretty good I can see them and find some strength and peace. My doctor had to put me on Nupogen for white count problems and it took a few days before I stopped having heart attacks (felt like / big baby). Anyway its done a pretty good job on me and I'm breathing so much better now. Fatigue is not as bad. Brainfog is biggest issue for me. I think! Dale

[Holly44]

Thursday my HGB was 11.9  
RBC 4.02  No procrit
WBC 2.1  GRAN 0.9   neupogen shot

When I read on this forum and other web sites I don't understand why the Hemotol Dr ever mentions reducing or stopping treatment

Nygirl
I truely wish I could get through a days work.  My team doesn't know what is wrong with me.  They just know I have some medical issues going on.  I have been the lead and the person with the IT knowledge and with my Co for almost 5 years.  I at this point would not be able to fix their problems and answer their questions or attend corp meetings, I would just be a mass in my office hoping know one comes to me for anything. Our system went down on one of my last days in the office and I was so confused I, well I just can't explain it. I love my job and I do mean love it but right now I am not who they all think I am, I am not who I was and I am not good for them. My team would be weakened by me right now. But I will be back and my family Dr says they (the Corp) will be so surprised at the change in me.
More power to you, you go girl.

Ok really go to go now. Gotta get drained.  LOL
I'll be back,
Holly

[can-do-man]

Glad your sx's are doing better, small brain = more brain fog, Btw if you need a ekg for your heart let me know. I have a great place to send you.

[Holly44]

Sounds like we have a lot in common.  Thanks for the kind words.

[can-do-man]

your hgb at 11.9 is great, no procrit needed yet

[NYgirl]

I told the people at work that I am on chemotherapy (since technically that is what it is). The big bosses know that I have hepC but the regular people - most of them - do not.

There has to be a REASON that you are in such bad shape.  11.9 isn't low and Whites wouldn't cause the problems that you are having. In fact my hgb is 11.0 and I feel great right now compared to how I did before.

Reducing meds is really not a great idea is why the doctor is not mentionning it - I don't really know that many people who have opted to, especially when you are only on a 24 week treatment.  I have to go at least 60 and they'd have to chop my arm off (well my thyroid out LOL) before I'd let them.

I only want to do this ONCE no matter what I have to do.  

Can you take medical leave (FMLA) for a few weeks while your body adjusts to the tx?

WHAT exactly is feeling so bad that you can't work aside from brain fog? There must be something the doctor can do to MANAGE your sides instead of REDUCE the meds. That is the LAST thing you want to do as it will hurt your chances of achieving or staying Undetectible.  The chance of relapse for a geno 3...I wouldn't reduce at all.

Can you give us some tidbit so many we can think of something that can help you?

[Dale_Ray]

My thought process is equivalant to stacking greased BB's. Not much going on up there right now. I looked on the search for EKG and I know it isn't done with an anal probe or large bench vise so don't go there again. I'm still limping like chester from the last recommendation for treatment you gave me. You still draggin today? I hope your energy comes up buddy. Dale

[Dale_Ray]

Stay in touch and let me know how you"re doing - We can all relate to one another in one way or the other. If the rest of the crew can't give you the answer you can trust me to make one up. Keep that in mind - just a warning. I'm having good days right now and my energy level is almost phycotic (spelling). Not going to question it though feels better than head down fatigue. Good luck to you. Dale

[can-do-man]

Not to bad today, not doing much work either, gave enough at the office this week. Went to my family doc. yesterday and go see my hepo tomorrow. Getting tired of doctors and blood thristy labs though.

[cuteus]

this tx is definetely not a cake walk, whatever that means, it is tough on the body and mind. The fact that your hgb is 11.9 and 'good' according to the hematologist does not mean that you will not feel ill from the reduced oxygen uptake. Each person reacts different to the hgb levels. Some might feel well at 11, while others feel like the moon fell on them. The emphasis should be on the symptoms, not the number itself. i found that any drop below 12, could be felt big time in my exercise routine. i would not have been able to continue it without wkly Procrit. I know I would have quit without it. I hate when drs say everything looks fine if the hgb is above 10, even if you have dark, saggy bags under your eyes and he sees you crawling your way into the office, they only look at the number. Perhaps you should insist that they address the symptoms you feel with hgb at 11.9, what was your baseline? If your body was used to 15 and 16, 11.9 is a big decrease for your organs to handle. Some people do well at 7, others feel like they are dieing. If he does not do a regular shot, it means that your hgb is dropping in between visits and making you feel worse. Procrit needs a few wks to stabilize your hemoglobin. I found that going longer than 9 days bt shots made me feel like you know what.
stop by anytime you have the energy to do so. hopefully the dr will take your QOL into account.

[NYgirl]

Good point - the epogen or procrit really must be done on a continuous basis or it "wears out" so to speak....it could be a dropping in between.

I know at 11 I can function but it's certainly not like I ever felt before tx for sure. After the big drop though...just getting this high seems normal to us because we've been so low.

[can-do-man]

Procrit comes with risks of its own. If you need it take it, but the less we have to put in us the better

[wonderingwhen]

Your platelets are not that bad at all! I started tx 28 weeks ago with a 67 platelet count. I have gone as low as 27 and am currently hangin in the 30's. My Dr uses 25 as a red flag to make adjustments. I bruise real easy and bleeding could be a problem.
NY girl I wish that Neupogen would bring up your platelet count but you are incorrect, I have been on Neupogen since week 4. As far as my Dr. is concerned there is nothing he can give me for Platelets at this point.

[NYgirl]

Consider it a bad edit job on my part - I went in and changed what I said and put platelets and never went down and edited the bottom before I hit send.

Good correction :)  Posting at work is the fastest talent I have but it's not always accurate!

[Holly44]

I've only received procrit once, my rbc is low but not bad. Its the WBC that hangs around 1.7 to 2.5  Gran was 0.9 monday and my platelets go from 82 down to 67.  The neupogen is what I get for the white count.  It puts a hurtin on me but you guys already know all about that.  
The sores are starting to pop up here and there with itching.  Some around my mouth but tolerable.
Please don't get me wrong, I don't was to reduce treatment and possibley he won't do it i just remember what he said in the beginning of all this.
I guess I really feel like a wuss because I have always been one of the toughest ladies I have ever known but not anymore this tx seems the put the big wammy on you.  
I am a fighter and I will not give up. I do know my chances a good and I understand so many other are having a much harder time and must be on treatment much longer then i do.  I think that may be another reason I've waited so long to post.  Who am I to wine when I truely do have it better them so many other.  I fell for anyone on the poison.  But you those who have to undure it for longer than 6 months I look so up to you and send all the energy I can you way.
I realize I'm slow at posting, hope it will improve.
Thank you
Holly

[Dale_Ray]

My sides were the worst between week 8 and 12. My doctor did tell me there was a chance he would reduce dosage. I think that is the last thing you want to do. It reduces your chances of success. Give it few more weeks. Big thing is lab work at 12 weeks to know if you are responding. I'm on 48 week treatement and YUUK but my wife keeps slapping me around and telling me I will complete. One thing I'm not going to do is cut off my food supply ha! Hang in there and I know that is just words but don't look to far ahead. At least that was my problem and now I am dealing with the day I'm in and not having expectations about tomorrow. It helps with me because of my small brain. Wishing you the best. Dale

[NYgirl]

The first months are supposedly the most IMPORTANT months on treatment. I wouldn't LET them reduce my meds even when my hemo went from 15 to 9 in a week because I knew it would hurt the chance of SVR.  Studies are showing now a bigger chance of relapse for 3s than anyone thought previously. We have had that happen to one of our strongest members.

I have had a very hard time with sides and come to work every day even though it's horrible - insurance is the most important thing right now to me to beat this disease.

If at all possible I certainly wouldn't drop meds or plan on quitting early if you can help it at all. But sometimes some people just can't do it and then you really have no choice.

What side is bothering you the most aside from the brain fog? That hits us all pretty hard. The only thing that could have made me quit was the anemia but I am glad I persevered through it.

Now I have Hashimoto's Disease due to the interferon but I won't stop. I look at people like Magnum and feel like a baby when I want to complain. He gives me so much encouragement with all he's been through.

Best of luck

[FlGuy]

Low wbc is easily controlled with the neup and it seems with few side effects - at least for me. During tx plates bounced between 60 and 85, the danger zone is around 30.  On you last cbc what was the hgb level?  The hgb and procrit is probaly the answer to the tiredness/anemia.  As for the sores and itches lots of folks here can give you ideas for over-the-couter stuff and rx's the doc could consider.  Hang in there. you're almost halfway.

[Holly44]

You crack me up.
Anyone who can endure this tx for any amount of time is a winner in my book.
Know that I am not a quiter. I have 3 children 3,15 and 22 and my 1st grandbaby is on the way. I will not quit.
I sat in the Dr office all upset because my platlets dropped to 67 and I was told by the hemot that if they dropped past 50 he would stop treatment.
I called all around trying to find a second opinion are a found out there are Dr who will let the platlets go a bit lower before any talk of stopping.
I spoke to a nice Dr trying to find out anything I could do to help my platelets as the hemotol and gastro could not tell me anything.  this other hemotol told me to try exerting more energy before they take the blood and guess what It works.  So this told me I need to be more active on a daily basis.  Easier said then done right now.  
Please forgive the type-o's I get in a hurry but still can seem to be quick
I have to leave now to go see this Count Dracula I speak of.  Thanks for welcoming me.
I'll be Back.
Holly