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Avatar universal

How's everyone doing?

Just wondering how everyone who started tx recently is doing.  Some folks have been absent.  Maybe they are dealing with sx??  I take shot # 6 this Friday and have survived so far, except for feeling like **** on sundays and mondays.  Only sides are general malaise and lack of motivation to do stuff.  I catch my second wind on Weds or Thurs, but then comes shot night.
I had my 4 week PCR last Fri and am awaiting the results.  If I am clear, then I am halfway thru tx.  I have the option to do 12 weeks if clear at 4 weeks, so pray for me.  I am (was?) geno 2b, vl 1.3 mil, minimal liver damage.
I am especially wondering what happened to Robbetz.  He was all gung-ho and I haven't seen a post from him in over a month.
DJL
39 Responses
Avatar universal
yup, that is the feeling all right! apathy and fatigue! gl on the PCR, but I would go as long as I coul tolerate for good measure
Avatar universal
Glad you're doing well, I am not. Took shot 3 on Sunday, so far have not been able to work or pretty much function at all. The headaches are the worst part and I did get Imitrex, and it has helped some. Nauseau, vomited a few times; extreme pain in joints, bones, and muscles with a low grade fever; off and on. Dizziness and extreme fatigue, I haven't been sleepy well either.
I see a couple different doctors over the next couple weeks. If things don't start to get better soon, I am not sure what I'm going to do. I'm suppose to return to work in less than a couple of weeks. Right now the way I feel there's no way I could. I am not sure how I would be able to continue this for 43 more weeks if I don't start feeling better.
Thanks for listening
Avatar universal
Just finished up week 11 of 48. I have good days and bad . The two days after the injection I find myself irritable and out of sorts. I have started to take ST Johns Wort for depression and have quit the OTC sleeping aids. My Doc will Px somthing stronger if I would like .I find that the sleep aids dont help and I feel hung over in the morning which adds to the irritability.
One thing I find really helps is water . The more I drink the less side effects , when I fail to drink enough ..more side effects.
Avatar universal
what interferon are you on? I was on Pegasys and was able to drag my body to work everyday. I hope your sx settle down soon. I had a headpain(one side) for about 10 days, the meds prescribed, can't remember one of them really helped. The nausea eased when I quit coffee and some other foods, but the aches linger until I took vicoprofen for the day. Maybe you can switch interferons?
Avatar universal
I guess I'm lucky in that I have not had headaches, skin problems, excess irritability, etc.  For some reason, I am not losing hair.  In fact, it is getting much thicker.  I did get a couple canker sores the first week, but have had none since.  In fact, right now I am lunching on some chicken nuggets with ketchup.  Tonite will likely be a mushroom pizza.  
I'm not sure how the riba effects me.  I take it with one of those little containers of chocolate pudding, the real fat stuff, along with a couple Snicker's minis.
DJL
Avatar universal
Sorry you're having such a rough time. Perhaps this will make you feel a little better...one of the doctors I have been to said that in his experience the people who react to tx the most,(i.e. worst), are the ones who benefit the most from it, and are often the ones who clear. Don't know that I'd take that to the bank, but it helps me get through the bad days. Good luck and I hope you'll feel better as time goes on.
Avatar universal
Hope your sx diminish soon.  They usually seem to as the tx wears on.

I was on PegIntron last year and had a harder time with the sx (aches and pains and headaches on Sundays and major hair loss), but a better, faster drop in VL.  I had to discontinue because of anemia.

This year we're trying again.  They put me on Pegasys, and although I had a similar reaction after the first shot, every other week has been fine.  It's like I'm not really taking anything.  Hair loss has begun though, but not as rapid or extensive.  I'm in approximately Month 5.  I've lost count, believe it or not.

Which interferon are you on?  I hope it gets better for you.
Avatar universal
I will be taking shot # 24 of 72 this Sunday. If I am not clear, I am considering stopping tx. Even if I clear at some point down the road, like 28 weeks, 30 weeks ect, I believe my chances of SVR are probably very low to be doing 18 months of this bug juice.

My doctor & nurse both try to be positive about it all and encourage me. They keep telling me what a trooper I've been and that it will all be worth it in the end. But I wonder if it really will be worth it? They say to go at least 28 weeks before stopping.

Also, for a solid month now, my neurological sx are progressing quite a bit. I am very concerned about possible permanant damage. I will be seeing a neurologist soon and make a decision from his recommendations and the 24 week results.

Are my chances still 50/50 or am I kidding myself? ((( Sue )))
Avatar universal
I CONGRADUALATE YOU ON GOING TO WORK EVERYDAY.  I BABYSIT MY
TWO GRANDKIDS 6 AND 1YR. I HAVE TO TALK MYSELF INTO TAKING A
SHOWER EVERY MORNING.  I AM ON MY 11TH SHOT.  ALL THE DAYS ARE
THE SAME.  VERY TIRED SOMETIMES IRRITABLE AND OF COURSE VERY
WEEPY.  I AM ON PEG AND COP. I JUST DON'T KNOW HOW ANYONE CAN
DRAG THEMSELVES ANYWHERE.  I SEE THE DR ON THE 25TH. I WILL
ASK FOR PROCRIT. THANKS FOR LISTENING.  ADELE
Avatar universal
Carolyn,

I hope that you're able to see this note, hidden in here.  I went to your site, that's a really great site.  Love the icons.  I didn't realize that you were a Floridian.  So am I.  I'm on the Central - East coast, East of Orlando, south of Cocoa Beach.  Anyway, I'm praying for you today at Shands and I hope that everything goes well for you.

Susan
Avatar universal
are you anemic? on Procrit?
it made a big difference when they finally put me on Procrit, I was able to breathe and do my exercise class. I still ached but the vicoprofen helped a lot.
I can see wanting to quit, the mental and physical exhaustion is overwhelming. don't let anemia linger for too long!!
Avatar universal
you did notice the word DRAG, right? everyday I wanted to curl up in bed and remain immobile, but on my way to the bathroom on that morning must do trip, I knew I could not waste a sick day, so I gulped that vicoprofen and on I went. Procrit helped a lot and the pain killers, main reason I was able to finish, and or FEAR of relapse. terror can motivate big time.
Avatar universal
I felt the same way the Monday after my first shot of pegintron.  The first shot was like getting hit by a truck.  I think the Riba gets to you after it has 3 weeks or so to settle in.  I don't have any immediate reactions to the shots now, but I have gotten fevers a day or 2 later that are so intense you could fry an egg on me.  That type of thing screws up your equilibrium and makes you nauseous.  The 4th week was just a bad week in general.  I'm just hoping that 4 week pcr comes back undetectable.
Are you on pegintron or pegasys?  I don;t know about pegasys, but the pegintron sure seems toxic enough to kill anything.
DJL
Avatar universal

Make sure your drinking enough water, I found that is absolutely essential. I found I can't think ahead to the end of tx, I try to stay focused on getting through just one more shot, my next one will be the eight and that will be 8 shots that I don't have to do.

I have sinusitis ( and associated headaches ), extreme fatigue and a general ill feeling most of the time. After work all I can do is lie down.

Before tx I was out exercising all the time. I think that the lack of exercise may be hurting me, but with my fatigue and general ill feeling it's hard to motivate myself off the couch. I'm going to get a beginner yoga DVD, maybe that will help.

I was undectable at 4 weeks so I am encouraged but feel I need to maintain some strength somehow.

Good luck
Avatar universal
Rifleman - so glad you posted. You and Robbertz were starting just about the time I found this forum, and I have been watching you guys.  I too would like to hear from Robbertz.  I took shot 1 last Friday and so far so good.  Had one day - Monday - that I felt a little out of it (distant) and tired, but other than that I don't think I have any sides. I have noticed a few zit-like things on my chin -like I get when I have been on a chocolate binge - and wonder if that is Riba - but it is nothing. I am drinking as much water as I can -- every time I think of it I grab a glass and chug. I take my Riba in the morning with high fat yogurt and in the evening with dinner.

Cougareyes - So sorry you are still having such a hard time.  As I recall, your biopsy was a 3 or so, so you really need this to work.  Please know that we all care about you and hope you can continue.

Boston - wow.  Sounds dismal.  I can't remember what your damage was - only that you had an enormaous VL.  I hope the test comes out clear and you will be encouraged to continue.

Dendl - sounds like depression.  ANy help with an anti-depressant?  I know how grandkids can wear you down.  Please take care
Avatar universal
Been on Procrit since week # 3. Yes, it makes a big difference. It's not weakness per say that is my main complaint. It's the neuro stuff that is getting scarey. I am having serious balance issues, falling, ect. Lots & lots of neuropathy, severe vertigo. I'm also having visual disburances, very weird visual stuff. I have already been to the optho, had my eyes checked and retinas are fine.

But I know something is attacking central nervous system and I am hoping it's not interferon induced. I will be seeing a neurologist soon to get some answers.

Interesting thought > I had many of these sx several years ago, was checked for MS and told I do not have it. I am wondering if the interferon is triggering it now? This bug juice really does a number on us, doesn't it?

If I am not clear by week #24 I think I am stopping. It's getting to be too much.

(((( Sue ))))))
Avatar universal
Glad to see you holding on. Told you that it would be a memorable ride to say the least. I see you said that you are going to cut tx short. Those studies are very new, and have not been studied in great numbers. You have had this virus for ALONG time, and I would stick it out as long as you can. It will get better.

I'm on week 39. Friday will be shot 40.. Damn, I can almost see the finishline!! I have been very lucky as far as sx's. They where almost nonexistant until week 28 or so, then got hit hard with anxiety. Now I have been flying again for the past few weeks. Have experienced no sx's at all, other than piercing headache usually saturdays that comes and goes. The pain is severe, and quick. But other than that, all is well and I'm also on the fatty chocolate diet. But mine consists of cookies, ice cream, and can't leave out the pizza!!! Gained back 10lbs over the past few weeks.Still working fulltime, and have only missed afew days since the start of tx. It can be done!!
Avatar universal
sorry for caps, had them locked, I can see how scary that would be, permanent nerve damage, you had the cryo to contend with and who knows what that in itself did to your system that has made it so prone to neuropathy. It does seem as if the new drugs are also including interferon in the cocktail, so I would not know what the answers are.
best to you on the PCR.
Avatar universal
We should talk. I am using the same clinic as you. I have found in many areas relating to this tx, Kilby and Andy are not as up to speed as they need to be. (Very kind, nice people but I really need more than that....) I also was very intrigued with the possibility of cutting my tx short. (Find my posts -- lots of comments from knowledgeable people on this issue.) I cleared at 4 weeks with the Quest lab test that goes to <50. When I last saw Kilby, I insisted on using the most sensitive test out there -- the Labcorp which goes to <2. He didn't even know about it! I did that one at 8 weeks and was <2. I have a good friend that had a viral load in the single digits -- those other tests would have showed her as undetectable. This could make a huge difference in someone's treatment plan.
I have received a second opinion from a Hep C guru at Brown University Medical school -- unless the sides make continuing tx impossible, the word is go the full 24. If you relapse (and some studies are showing 2's doing this with the less than standard protocol), you will need to retreat 24 weeks. All of the studies for 2's and 3's have been done with Europeans -- that might make a difference.
It's almost unbelieveable that I am advocating the full 24 weeks. I hate this tx, I've had just about every possible side effect but I am becoming more and more convinced the 24 weeks is the way to go. I have decided if any part of my (until now healthy) body begins to show negative consequences (thyroid, retina, etc.) I will stop the tx immediately and hope for the best. I do #13 tonight.
Avatar universal
I am on Pegysys and Copegysys (Ribaviron -1200mg).  I understand the sides are slighter than the Pegintron but I don't know  I am still waiting for the kick -- but I can feel subtle changes in my body as it adjusts to the meds.
Avatar universal
I am on pegasys 180mcg and 1200ml copegus, and yes I am in stage 3. I do believe it's working and had a very possitive outlook before starting tx. I never imagined it could be like this, but it's not only handling the sx I'm concerned about. I'm also  concerned of how financially I can continue on tx if I can't return to work, and the possibility of losing my health insurance.
To all those out there doing well, I'm happy for you; for those stuggling I hope you find ways to cope.
thanks for listening,
Avatar universal
I sent Robbertz an email to see what's up. I was wondering myself.  he contacted me thru the pegasus web site right before he started tx. I told him about this site.

Monte
Avatar universal
Hello, God bless all!  Test results came back today and 3rd shot Friday.  Need some feedback, HELP any one? WBC 4.1 L   RBC 4.73 and on CMP , My T PROT is high 8.3.BUT I AM WONDEERING ABOUT , on April  21 ALT was 305 and  AST 200.Today ALT is 75 and AST is 37. Could this be a indication that TX is working? Should I ask for  procrit?  This early, I have FATIGUE, and my worst is shot day and 3 days after. Have a appetite, doing ok otherwise and I had to miss church and hoping this Fri shot isnt as hard on me, and I can go this week. Wishing for the little terrorist to go, I agree on this thread , POSITIVITY and leaarning all you can, ATTITUDE DEFINITLY!  GOOD LUCK TO EVERYONE Hello to bon_vivant, where are you?  Aubbie
Avatar universal
Rifleman:  I was just wondering where you've been lately, you haven't posted in a while either.  Glad things are going ok for you!  Oreo pudding is pretty good too with that morning riba!  :)

Bostongirl:  Thought I'd share with you what my doctor has decided to do since I did not meet the 2 log drop at 12 weeks.  Right or Wrong...who knows...all these doc's have different opinions...you just gotta go with what you think is best.  I am a 1, VL pre tx 1.9, 44,000 at 12 weeks, was on PegIntron/Riba.  Rather disappointing. He said regardless of how I look at it, I am a non-responder.  He wouldn't give % of SVR if I was to continue same tx, but I believe it was rather low, not the 50-50 that we initially started with. But ya know, the way I look at it is, 20 is better than 0. At 16 weeks, doc stopped tx and has suggested I start Infergen/Riba within the next 4-6 weeks. I've been doing a little research with the help of this forum and have found 4 people that have or are currently tx with Infergen.  Looks good...also, my doc said I am looking at 41-61% again once I start the Infergen.  So, what does one do?  Doc said sx aren't as bad as Peg tx either...I still need a little convincing of that statement...But I think I am going to give it a try once summer's over...what have I got to lose?  I do feel pretty good now that I'm off tx. Going to enjoy what little is left of the summer. I hope all goes well with you.  :)
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