Post Hep C Treatment Issues

I am on week 20 of treatment.  I have not felt as bad as almost ALL I've seen on this site.  I work out every morning for an hour and a half and then go to work, at least three times a week I come home and walk on the treadmill while I watch the news.  I don't feel like I can leap tall buildings in a single bound, but I am not completely unable to function and my life has pretty much been uninterupted.  I am miserable though, I want my life back.  Question is this, my biggesst concern is what I've been reading about POST Hep C treatment.  My thoughts were that I was going to do this horrible stuff for a year and beat HEP C and pick up my life where I left off.  From what I am reading, that is not the case.  I have no faith in my doctors, I believe they are all liars and I have no faith whatsoever in the drug manufactuers, I KNOW they are all liars.  I need feedback from people like us who have taken this horrible stuff, I need to know what I am going to be looking at after I am done with this stuff so I can make an informed decision on whether I want to continue.  From what I understand, even after a year of this stuff, I have no guarantee that I'll be cured.

[jepperone]

Glad to hear the side effects have been minimal so far but there is still 28 weeks left to do if you are going 48 weeks. Some do not get hit hard when starting and it seems that your one of the lucky ones. If you should go through the rest of treatment with minimal sides who is to say you will have any post side effects when you finish. Luck of the draw I guess.

jep

[Butterfly45]

I honestly believe that it isn't so bad for me because I exercise an hour and a half a day or more.  I am miserable, though.  Some days I don't know what end is up, but I refuse to let it beat me, I think that you've got two choices, it beats you or you beat it.  I am choosing the latter.  I am afraid though that they don't know enough or aren't telling you what will happen AFTER a year of these meds.  I want to know.  I don't want to trade Hep C for heart problems, cancer or god forbid feeling worse than I did before I started Treatments.  I am afraid, very afraid.  Need some positive feed back from those who have gone the distance and are HEP C free, I need to know it will be worth it to continue.

[cb867]

I did the tx for 23 wks.I started feeling better in a few wks. I stopped mid Dec 09. Now I feel normal again. I feel like I never had tx. Maybe you will be as lucky. There is hope.
Good Luck

[Butterfly45]

Why only 23 weeks?  

[Bill1954]

Hi Ms Butterfly,

Welcome to the discussion group. I’m glad to hear you’re not getting slammed with side effects so far; hopefully, this trend will continue throughout your treatment, and you’ll be able to put this behind you soon.

A quick history; I was diagnosed in 2004 with genotype 1 with stage 3-4 fibrosis. The doc felt I was probably transitional to cirrhosis; I had hepatosplenomegaly on ultrasound.

I treated with Pegasys the first time, but relapsed shortly after treatment; I hadn’t cleared until week twenty, so this was somewhat expected.

I treated again in 2006 with Pegintron; this time, I used 2000mg/day riba, and squeezed the vial to get >200µg/week interferon. I also treated for 96 consecutive weeks; this time I was successful, thank goodness. I’ve been off treatment now since August ’08, and am now SVR.

I didn’t get overly ill during Tx; my blood values were reasonably good, and never required Procrit or Neupogen.

Like you, I was tolerant of exercise; I managed to walk vigorously here every day for the first 12-14 months during my second treatment; after that, some moderate depression set in, concentration became difficult, and I slowed down. I was taking classes at the local community college too; I stopped classes towards the end as well.

Unlike many reported experiences here, I felt physically good within two or three weeks post treatment; although I did experience some significant depression. I had used Lexapro throughout treatment, and stopped at the same time as treatment was completed; this might have been premature, and contributed to my post treatment depression.

Now, nearly 1.5 years afterwards, everything is back to normal, as far as I can tell. I have type 2 diabetes; this actually is better in terms of management; I no longer require insulin, although I still take oral anti-diabetic pills.  My eyesight has improved; I was 20/40 throughout Tx; last week, the ophthalmologist said my eyesight is 20/30. Possibly due to better blood sugar management?

All in all, I have absolutely no regrets looking back; if for some reason I had to repeat the experience, I’d to it again; grudgingly, but yes, I’d do it again :o).

I sincerely hope you sail through this, and move on with your life. I applaud you for a positive attitude, and your ability to continue your fitness regime.

Take good care; and good luck

Bill

[Butterfly45]

Bill, thanks, that is encouraging, especially since I have NO LIVER DAMAGE.  Dr. gave me a pretty positive feeling that my liver is in fantastic shape, which makes me believe i'll beat this thing after the 48 weeks.  Gonna keep hanging in and stay on this site.  It helps to talk with people who understand what I am going through.  My husband has been great, but he has no idea how it really feels.

[newleaf09]

If you've gotten this far with minimal side effects, you may not come out of this too badly.  Only SOME people develop autoimmune issues related to the treatment; sorry if the ones of us who have developed them have scared you.   I have had a few but they are resolving, slow but sure.  Did not mean to alarm you.

After 48 weeks of treatment, if you are still undetectable for the virus at 12 weeks post and 24 weeks post, you WILL be cured.  The poor folks who drag down the statistics to a 50% cure rate are those who fail to ever go undetectable or a few who go undetectable and then have the virus pop back up before their 48 weeks are up.  It is the norm for a patient who clears within 12 weeks on treatment (and a large portion who clear between 12 and 24 weeks) and is clear at the 48th week of treatment to remain clear of the virus.

Look back through the forum and stack up all of the SVR declarations against the few who finished treatment undetectable and have relapsed.  You will find the numbers overwhelmingly in favor of SVR after finishing treatment of 48 weeks.

You do have one common side effect: you don't trust your doctors.  That may be the most common side effect of all.

[mikesimon]

Patients who clear between 12 and 24 weeks are considered slow responders and a large portion DOES NOT clear the virus within a 48 wk treatment duration.  And the
statistics ARE NOT dragged down by people who go undetectable and then
have the virus pop back up before their 48 weeks are up.  The statistic are based on many factors, the greatest being relapse after EOT, not viral breakthrough.  And if you want to talk statistics, a 50 percent chance of SVR with Geno 1 is pushing it.  More like 45%+ and that depends on how long you've had the virus, age, degree of liver damage and so on.

We must strive for accuracy here.

Mike

[child24angel]

I agree with Mike !!!

[newleaf09]

Mikesimon is certainly an authority on negativism, especially in a response where the poster is looking for something positive.  Are there some references out there to back up those negative comments?

[terca]

I agree with you 100 percent.All of us going through this need all the encourgement we can get.We certainly don`t need anyone telling us how hard it is going to be to beat this thing.It is hard enough to remain positive,without someone telling us our chances are not that great.

[child24angel]

Actually, I disagree with your statements in reference to Mike....
He was stating facts the truth.  What is wrong with that?

Look in the mirror before you post something negative about
someone who you think is negative.

Mike is not negative by no means.  Trust me on this one.

[jepperone]

OMG! Mikesimmon a source of negativism, I so do not even entertain the idea of that statement, may be a little crusty at times and rightly so given time here helping the masses through some trying times and providing accurate information on different points of treatment through many hours of reading all the latest research evolving around the hepc storm that many maybe going through. It may be prudent for some to read mikes past posts in the archives, and is one of a dwindling few knowledgeable anchors left here on this site because of the ego bashing that has taken place here in the past.

jep

[toxy]

My Friend in England did this Theraphy and he finished it about month ago, he also had few side effects like pian in bones and hair loss, mood swings but now he is absolutely allright, so all this is very individual i think

[Diamond_Lil]

There was nothing negative about Mike Simon's post. It was factual and supports most of the data currently out there.  I am a two time relapser and did not become undetectable by 12 weeks on both occasions.  My second treatment was extended to 86 wks with PegIntron instead of Pegysus and relapse still occurred.  Encouraging people does mean inaccuracies should not be corrected or the facts should not be stated. It is important people undergoing treatment and those who are slow responders know exactly what their outcome may be and the truth isn't always pleasant or positive.  Current SOC does not guarantee a sustained virological response and the percentages are exactly what mike simon posted.  WHEN a person becomes undetectable is the best indicator of reaching a sustained virological response.

Diamond_Lil  

[can-do-man]

What was wrong with mikes post??? Its the truth. If adults come here for the facts should we not give those to them. As for us with geno 1, the SVR rate is more like 40% if you look at the recent studies of telaprevir and boceprevir with those that were on SOC only.

If your RVR sure your odds go way up, but being clear at 12 or 24 is not a guarantee you will be SVR....... I might surgar coat things to my grand kids but as an adult i want the facts.....

can

[R Glass]

This is my 2 cents. G1 with minimal liver damage, I would have probably suggested to wait for the new drugs. You would be almost finished with tx.
However, now that you have made the decision and started tx, my opinion is you need to stick it out with everything you can. By stopping you may create more problems for yourself. Will you insurance pay for a second attempt (mine said no)? Will your Dr. try again if you quit (mine said no)? HCV mutates and could possibly make it even harder to kill the second time.
There are no guarantees you will come out of this unscathed. Some us didn’t but most did. I hope you are one of them. I don’t think it is a wise idea to throw in the towel.
Just my 2 cents, Ricky

[nygirl7]

OMG! Mikesimmon a source of negativism, I so do not even entertain the idea of that statement,"

"and a large portion who clear between 12 and 24 weeks) and is clear at the 48th week of treatment to remain clear of the virus."


Mike was only pointing out yet again another incorrect statement - that is all. If we were to let go all of the mistakes that are posted what kind of good medical forum would this be to come to?

Cando man is correct - how many folks who were not UND at week 12 have later relapsed when the meds were stopped? Slow responders (like me) who achieve SVR are pretty rare and it takes a great enthusiasm to be cured by extending treatment (not stopping at 48) to "not drag down the statistics"  Honestly I don't really know what you were thinking with this post but certainly Michael was just talking like he always does - about the correct facts.

Saying you're right I posted that wrong is ok to do.  I've done it myself.

[jepperone]

Back to your basic question,

You’re not going to really know if any post treatment problems will surface until you finish the 48 weeks.

You are going to finish aren’t you? :-)

If the interferon is doing its job and at 1600 mgs of riba a day I don’t see how any virions can survive after 48 weeks at that dosage.

What are some of your pre tx numbers?

jep

[terca]

I thought we are all here to support one another.What good does it do to tell someone who isn`t sure of continuing treatment the facts.Even though I fight negative thinking everyday,I am a firm believer that a strong positive attitude goes a long way to beating this thing.I think most of us are well aware of the facts,but I am not going to start stating facts to someone who is not sure if they want to continue treatment.what is wrong with trying to encourage this person to continue treatment without stating facts.Who knows with a positive attitude we may be able to change the facts.

[nygirl7]

What good does it do to tell someone who isn`t sure of continuing treatment the facts."

Excuse me but that doesn't even make sense - what should we do just make stuff up and post poems about puppies and kitties?  This is a medical forum - not a Kumbaya jamboree.

We are here to support people in their knowledge and education of the disease and to also be a shoulder to cry on.  Taking away the knowledge and education is not helping anyone at all.  Part of being an adult is to learn the truth and make education decisions in our lives.  

How can anyone say whether this person will or will not even have a side effect either during the rest of treatment or after?  They can't.

But for anyone who is new to come on and read the inaccuracies as posted earlier - they would be learning something that was FALSE.  that is why it is important to make sure that the facts are presented properly and honestly.  

That is not not being supportive or negative in any manner. It's just being a good role model for the rest of the forum --- and that is Mike.

[mikesimon]

I stand by what I wrote but, if I came off as negative, I apologize to anyone who was troubled by my post.

I know this disease and, in all circumstances, I hope for the best outcome. I know the odds aren't always favorable - I treated three times before I achieved SVR and I treated against the odds with eyes wide open.

So I believe in hope but, above all, I believe in accurate information.

Mike

[sunqueen]

I think post tx issues differ for all of us much in the same way we react to the tx itself. I felt horrible in my last weeks of tx and had a whole lot of issues going on. Technically, I was finished with 24 weeks of SOC, but was pushing for 36 because I didn't clear at 4 weeks. At week 27 I was yanked from tx. GT 3 here.I

After a few weeks I felt fantastic as my energy and clarity returned. I also had issues. The important thing to note is that I had issues before tx, issues that lead me to the doctor and to a dx of HCV. I had severe joint pain, I caught colds easily and often, chronic diarrhea, headaches, rashes and  I was exhausted all of the time but could not sleep.

I went through lots if tests post tx for other auto-immune disorders and came up clean.

So for my list of pre tx issues:

Joint pain - a diagnosis of moderately severe osteoarthritis. I need replacement in a few places but for now opt to receive fluoroscopic injections.

Frequent colds - haven't had one in over a year. I still feel like I'm getting sick but sort of accept that I'm allergic to some of the strange things that bloom in FL. Currently I'm home with the flu, but I work in healthcare so no big surprise there. I had the flu shot last fall and got through the worst of this in under 36 hours.

Chronic diarrhea - gosh, I was loaded with polyups. Once my GI took them out I started to have normal BMs again. Go figure.

Headaches - still get them. But I got them as a kid and as an adult, so no big change.

Rashes - got the red bumps bad during tx and that went away almost immediately. My skin issues are worse. I come by my user name honestly. Did 50+ years of sun worshipping finally take its toll?

Sleep - I had insomnia for many, many years before tx.I worked for the first 5 months of tx and then tanked. I slept a lot until I finished. My sleep patterns have been totally borked since then. I come home from work, make dinner, eat and pass out. I have no choice in this. I sleep from 20 to 60 minutes at 7:30 - 8:00 every evening, wake up feeling great and then take a sleeping pill so I can sleep through the night. Before tx I took a sleeping pill so I could sleep through the night.

My teeth got loose during tx and I spit out a fixed  bridge that spanned four teeth. I lost  another one in the front that stayed loose after tx. Now I wear a a partial denture and have a nice smile.

My BP went wonky on tx. My doctor wasn't monitoring it. Again, I'm over 50 and on the stocky side. Would it have been an issue anyway? Who knows.

I'm sharing all of these personal details because I want you to consider that tx may not be responsible for all of the quirky issues we have when we're finished.

Finally, I'll bring this up again because it bears mentioning. I work in hospice. In the year since I went back to work I've had 3 patients around my age expire from ES liver disease related to HCV infection. Would I rather need more naps or would I want to be planning my funeral?

Nudge. Nudge. Easy choice.

[nygirl7]

Great post sunqueen - you are right, 100%.  A lot of things we are predisposed to and then blame on tx and meds and hcv.  I've always had back problems, headaches and stuff why would I think they'd get better now that I'm getting older?  So easy on tx to blame everything as a side effect.....rather than age!  ;)

[GSDgirl]

I also agree with Sunqueen.  I had / have a bunch of post TX issues BUT

The fibro I was recently diagnosed with was more than likely there 10 years ago, it is just a little worse.

The IBS can very well be tied in with the fibro

The fatigue ...........fibro also

The gastritis, I think the excess coffee drinking, and stress form not knowing what was wrong with me has eased up.

My grandkids come over with a cold that lasts them a day or 2, for me it is a major ordeal.

So, I think a lot of MY problems were already there just made worse.

Denise