Hep C Discussion Forum

Hi. Felt bad today. Hgb tested Monday is down to 9.9 after three weeks off Procrit. So now back on Procrit.Which has it's own set of weird things it does to the body. I am just full of chemicals now.  Did a dose Weds. Have a lot of down feelings and anxiety also.Take Ativan for anxiety and sleep.For 2 days  feel like a zombie who wants to sleep re the anemia. What a rollercoaster. Up to 11.9 now down to 9.9. My body is tired of it all. Aware the moods are result of Interferon/Riba but still does not make them go away.Oh yeah the brain fog is alive and kicking. Finally went to Whole Foods to get groceries in afternoon. Dreary and rain. Then just now think I turned it around. Walked the dog and jogged  my old-lady kind of jogging with him. Think Procrit may be starting to kick in.Got winded but not too bad. Felt a burst of energy. Maybe it is the pm Riba kicking in. Who knows. Once I finish this stuff I think my body is just going to go into some kind of fit and my mind also being straight once again.All I can say that it has been a trip of a very bad kind and I am proud of myself for handling it as well as I have. Two more shots to go. If I can do it then I assure everyone that anybody can. Thanks for all the support. No one understands this unless they are doing it. But right now I feel all black humor about it, like I have it in perspective. But that could turn on a dime. Interesting experience feeling like a crazy person who feels  like a sick zombie.Oh forgot to mention I look like a skeleton I lost so much weight. Bought pizza and pastries at Whole Foods. I eat but never gain anything. Still have some hair though. It is all good. 

Not having to plan a 20gm fat snack or meal three times a day on precise 8-hour intervals, and then eat them, has been one of the best things about finishing Incivek. My appetite for regular meals at regular times with the regular folks came back very quickly, and now we can all resume our normal eating schedule. You guys will be so amazed at the wonderful changes that will occur. Twelve weeks is a long time, and the human brain pulls a shroud over all that discomfort in order to cope. But when the problem goes away it immediately adjusts again, allowing us to enjoy the slightest new freedom as soon as it comes. And I almost feel guilty about how good I feel each day. Other than the reduced red cell and hemoglobin issues, which are under control, treatment took a major turn for the better.

Alan

I SO identify with the inability to plan or prepare meals. I cook for an elderly gentleman as a profession and by the time I'm done with his meals, I'm done. Sometimes I'm able to make food for home at work but mostly I rely on my husband, who is good but tends to make a main course and potatoes.  I MUST have green salad which is easy enough these days-- with those salad in a bag things, but I do long for healthy meals other than omlettes, turkey hot dogs and beans, meat and potatoes, etc.

I hate the 20 grams of fat deal and can't wait for that to be over but do feel like it is at least maintaining my weight. Have others noticed a dramatic weight loss once Incivek is dropped? 

Kelly,
I feel ya! I'm "normally" a healthy eater. Since starting tx, I have ZERO desire to cook, make a salad, or do ANYTHING involving meal prep. It's like I have some kind of aversion to it all of a sudden.  Every night it's like this big burden when I start thinking about making dinner for my family. 

The mood swings were the worst part of the treatment for me... I take my shot on Fridays and by Wednesday I am depressed, withdrawn, angry, sad, the whole range of bad feelings.  During these swings I sometimes start feeling frantic and need support.  I go to a talk therapist as requested by my Doc as part of the triple therapy.  The therapist was a God Send... made it very tolerable, and understandable.  Therapy reduced the intensity of the emotional side effects. Also, I quickly saw a pattern emerge after taking the shot and would try to plan around the bad days.  I know what works for me dosn't mean it will work for anyone else and i  know its the drugs, I remind myself it's the drugs, it dosen't matter I feel what I feel and it feels like hell at times.  I can understand why someone would want to give up, I came to that point during the therapy on two occasions where giving up seemed like my only option.... I am down to 1 week and 5 days, what a ride.  I keep in mind "this to shall pass" and it has.  Thanks for all the support and for those in the midst of some nasty side effects hang in there... 

No Virus Found, worth the misery... Mark

Hello, Kelly

You made me feel good when you said "sobbing at ASPCA commercials was a little odd as well". While on tx I have become comfortable with the sentimental old fool inside me. I get all choked up when Sara Mc starts in with "Arms of an Angel". Never happened before. But it happens all the time now. First "mental" side effect I have ever had in my whole life. And not necessarily a bad one.

Alan

My husband also has good and bad days.  The longer we go, the more bad days, but there is light at the end of the tunnel.  He is retired, so does the shoot Tuesday PM.  Doesn't really feel bad until Thursday/Friday/Sat.  Tired, grumpy (with a capital G!), very emotional, and itchy.  The rash is spreading, and we've tried everything.  Surprisingly Boudreaux's Butt Paste on his legs and arms seems to reduce the itching and inflammation to a tolerable level more than any prescription ointment, medication, etc.  Attarax helps at night to sleep.  He too just withdraws, lays in bed reading.  We are just taking it one day at a time.

All you can do is hang in.  We make no plans, and try to take advantage of the good days when they come.  Our motto: I can do anything for 4 weeks! (because we only take 4 weeks at a time)

• Mark, So sorry about your brother. That is hard to deal with if in the best of health and a great mental state much less on this stuff we are on. Glad u persevered and have 2 1/2 weeks left. I tend to withdraw also. My way of coping, hunker down and ride it out crazy bad mental and physical feling and all slse. Getting on this forum is a lifesaver. I am with you on the finishing time about two and a half weeks til last shot March 19 and will be so reieved. Thanks for lettings us know how you are doing and glad u are about done. Hugs

Hi Daniel

I get the "Heptimax" HCV RNA test done

. Quoted:

     Linear range: 5 to 69,000,000 IU/mL

This is a 2 part test. A PCR type test (polymerase chain reaction) for VL 43 to 69,000,000.

Then if detected, but below quantifiable range, a TMA type test (transcription mediated amplification) good down to 5 IU/ML.

My results from this test also take close to 2 weeks.

Heads up, keep fighting!

Brad

There's another test that goes from 2-2million iu or 5- 5million copies its quantasure from labcorp. takes about 14 days for results.It's either the lowest test range or close to it.Good one to have done.

This is on the LABCORP test results page in my records.

I can acess my records on line.

Hope this helps...

The quantitative range for this assay is 25 IU/mL to 69 
Million IU/mL using a combination of Taqman real-time PCR 
(LLOQ 43 IU/mL) plus reflex to another Taqman assay (LLOQ 
25 IU/mL) for low viral load samples that were detectable 
by the original Taqman real-time PCR assay but not 
quantifiable. The limit of detection of the assay is 
7.1 IU/mL for HCV Genotype 1.

Daniel, a good vl test is labcorp it goes to single digit i believe it is quantasure test. you can look up on their web site.

 As for sides, after 4 months on 3x trt. the best thing I hope for is not to have something new crop up.You sort of get used to things after awhile, didn't say happy just used to.Even the things you stressed about when they were happening, are just part of it all. You can't go to doctor about everything, besides they don't know how to treat it anyway because its drug induced.You either reduce meds,thats a don't do if it can be helped,take another pill or pills to help, or like its been said-- just suck it up.I wish there were other options as I would have taken them. This will test you--no doubt--it did me and still does.I hope for the best for you retox

 All,

Just finished eight weeks of tx, so far so good.  Keeping a positive outlook and using the support I've gotten here has made it easier.  My blood work shows no virus found above a viral load of 25. I'm not anemic, and my liver function is a little above normal witch is to be expected.  No change in my treatment and the side effects seem to have leveled off.  That makes it a little more predictable and helps me plan my week around whats expected.  Hope everyone is in the best health possible considering the circumstances.

Amen ,Jim!!!!

You are right, knowing that my brother has no hope weighs heavy on my mind.  Sometimes I just wonder why so different an outcome...  Its hard to even speak of it...  thanks for your honesty

Mark

Hi retox,

Firstly may I welcome you to the forum I must apologise for not saying hello earlier. Not much more I can add to what Jill has said, but yes it's about this time in tx that you feel the full effects of the Riba on your system.

The good news is you will adapt very quickly now, you will still feel exhausted but your body will adjust itself...such an amazing mechanism isn't it. The best advice I can give is to listen to what your body is telling you, simple as that. This is your time to heal your self.  I wish you all the very best on your journey and am so glad you have found this wonderful group of people.

Be strong and spoil yourself whenever you can.

Cheers,
Greg

Hi retox, sorry you`re feeling such exhaustion, but yes it is a fairly normal part of tx.  Yes it is the ribavirin which is to blame, as it causes a drop in your red cell count, which is basically anemia, and as Deirdre said, these are the cells which carry oxygen round your blood stream. 

Best thing to do is to get as much rest as possible and not expect too much of yourself while on tx.  Your dotor will be monitoring all your blood levels of course.

All the best to you, Jill xx

ps you posted just before I did!  All the best of luck. xx 

 Retox-water never helped me, not 10 years ago, not now. I do my 15 shot next Fri.

So far you haven't explained any side effects, that sounds at all un-normal.

This is treatment, it's hard! However if you had to do raidiation for liver cancer, it would be 100x worse.

Not to mention if you ever saw someone dying from hep c..Their stomaches bloat like they are pregnant with triplets, it has to be drained daily, as the bile stops working right.

I watched one woman turn green like a marshon, from a ufo movie, another turn grey and look like wax. You can start bleeding out of your pores..for no reason. Throw up large amounts of blood.

The difference is..then there is no relif in sight. That is true suffering! without hope, of feeling better.

Now on treatment, you may feel like you have a bad flu, you may itch, and feel nausia sometimes, you may have the runs, sore throat, sores in mouth, ect.

Differnce is, not only is treatment much easier than the alternative, but there is hope at the end of the tunnel.

You are doing treatment, in hopes of not suffering worse later.

This, may make you ot feel good, and may make it so you can't do anything, for 6 months or so..but in the bigger picture..this is a cake walk!

Your side effects sound completely normal!

 But if you sit and worry all the time, you can work yourself up into a fear, that will get you taken off treatment.

As treatment goes on it's completely normal that you get out of breath just getting up, or pulling the blankets up..let alone walk.

Treatment makes your blood level drop. They are what carries your oxygen.

But it's still considered normal for treatment.

People don't do treatment, because it's easy..they do it, in hopes of not suffering much much worse later on.

But nobody ever said it would be easy. They said it will be worth it, if you clear it, and get to have your life back, without fear.

Did you experience total exhaustion, for example if i pick up a 40lb object and move it 10 feet i will need to sit down for 5 minutes.  I have noticed that this normally occurs a couple hours after the ribavirin.

I get scared that my side effects are over the top.  I don't have a base line to go from. It would help if someone that has been on tx for a longer time would chime in.  Others experience is very helpful. I don't want to have to quit tx.  I talked to the RN on the pegasys hot line and was informed that the side effects can worsen over time and then subside some, but i should contact my Dr. and let him know about the extreme exhaustion.

btw  a hemroid ointment has been very helpful for the anal burning and itching.  I have to use it faithfully to get the best results.

good luck and thanks for the posts