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135456 tn?1301437624

Feeling progressively worse after treatment (8 monthhs post SVR). Whats up?

Hi guys.  I haven't posted in awhile but I need to to know if anyone out there have  found their health going steadily down hill after treatment even though they had acheived SVR.  I am experiencing extreme fatigue, overall weakness,anxiety,depression,aches,etc.  This was my 4th treatment with Infergen,double the standard riba and nitazoxanide.  It has so far been a durable SVR but I honestly feel worse now than when I was infected.  I'm not complaining but I am writing to find out if others have had SVR and have still been full of symptoms 1-2 years later. My theory is that since I basically did consecutive back to back treatments the riba is taking longer than the standard 6 months to leave my body and this is where the symptoms are arising from.  I'm worried that I pushed my body to far and that I am now paying the price.  Any input/experiences would be greatly appreciated.  Thanks guys.
                                         St. George
24 Responses
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223152 tn?1346978371
I don't have any answers for you since I am not SVR, but I am happy to see your post.  I had not realized you  treated with infergen.  I can only imagine what a hard treatment that was and would not be surprised if the recovery from it takes over a year.  Double Riba besides the infergen. WOW.   But you were a nonresponder, weren't you (not a relapser)?  I think it is remarkable that you have cleared and hope that you will eventually get back to whatever is normal.  I think after being on treatment for an extended period or periods, it is hard to even remember what normal is.

Best wishes, frijole
Helpful - 0
476246 tn?1418870914
I'm sorry to hear that you are still feeling so bad. It is difficult to compare with SOC, as you did a brutal treatment with more potent drugs. They must have left a much bigger mark on your body.

I hope you will start feeling better real soon.

Marcia

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Avatar universal
It might be a real shot in the dark but after reading the thyroid thread on the other side and it reminding me of it, I would get your thyroid checked.  Fatigue is definitely a symptom of low thryoid and interferon can trigger it.  

As for the depression, that is a more common after-effect than I would have thought until it hit me like a brick wall dropping me into a black hole for awhile after treatment after getting through treatment with no depression at all.  A number of people have experienced that.  I'm fully recovered from it now and I can only imagine what it might be like after going through treatment to the degree that you have.  Are you on medication for that and is it helping?

Congratulations on your SVR - hard won.  I hope others who have undergone infergen treatment like you will chime in with their post-treatment experiences - hopefully this lifts soon.  

Trish

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250084 tn?1303307435
Hi, LL here.

First I'd like to say to ALL post txers ,even 24 weekers, and with SVR to please NOT feel your 'complaining'. I know how you feel, it's hard to get on here and vent on how bad we feel when we got SVR, etc. but yes, we are so very grateful, but not one day has that grateful made me feel physically better, lol! You, we all, have the 'right' to come here, with issues, concerns. I am near 2 yrs post and my life is very different, mentally and physically and I did the 'easiest' tx there is ...24 wks, ONE time.
As , I think it was jmjm (?) said a long time ago...your pain IS your pain. Everyone please always feel free to vent, come here. Trust me, as I learned thru tx, if your 'whining' your friends will tell you to 'buck up' when/if you need it :)
(gee I heard that a few times, ever so nicely:)

There is a lot of threads here on this subject, try to find some, they may help and when I get time I'll go thru my old post and try to locate a couple. Sadly, there's never really an answer for it. There is no post tx studies, tho I'm wondering if we could start one ourselves just from this site!

I would be facing cirrhosis in the next couple yrs had I not tx'd, so as with many of us, there was no choice but to tx. For many, this is the trade off. You did a lot of these drugs, but I don't think (someone correct, add in here?) that the Riba should take longer to leave your body. I know mine is 'gone', yet has made no difference.

Wish I could add/help more. I do milk thistle, as best diet as I can, etc.
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253566 tn?1219679699
Lady Lauri, been thinking the same about a post treatment study.

My docs submitted papers to the NIH about my case. The NIH responded that though they realized I had some horrible problems they could do nothing.

With the USA going thru this health debate it may be a great time to contact our senators and congress people.

I have one for PA who has been in the health field and have a letter written and about to send off and then call. His office seemed very interested.

Hope all feel as good as possible and keep up the good fight.
Helpful - 0
717272 tn?1277590780
Lauri,
'yes, we are so very grateful, but not one day has that grateful made me feel physically better'.  I never quote people's posts back to them, but must say that that line is definitely hitting on my philosophy.

I think that we are all missing lots of things as we recover from immunotherapy.  I think we are not recognizing thyroid problems, low hormone levels, bone density problems and much more.  We are assuming that now that we're not being beaten on by the IFN/riba (and who doesn't feel better for just stopping the drugs) we are assuming everything is hunky dory.  I am wondering, most of all, if the things that the therapy has pushed out of whack will repair on their own or do we need to start the doctor dance all over again?  And how long is a reasonable time period for the body to reset itself?  Sure would feel better about it all if I just had a few answers to "How long?" and "Do I need to do something about this?"  A post TX study would be good.
Helpful - 0
663073 tn?1260537120
I am now at one year post treatment.  In my case, I started the treatment in stage 4 HepC, meaning I already had cirrhosis.  I had also had the virus in my body, the specialist said, for 30+ years, and in that time a lot of damages had been done.  I did not respond to the treatment, they pulled me off at 14 weeks.  My viral load started at 5 million and went to almost 14 million.
   I am not sharing this to say poor me, just letting you know, because a small number of us, get worse.  I am going downhill, my liver is not working good now, and I have developed all kinds of additional health problems that where not there before I started treatment.  Or, they might have been laying dorminant and the treatment woke them up?  The doctors are not sure.  I am in the baby boomer generation, not in a high risk group, and they do not know where or how I got this virus. If I had drank or used, I would be dead.
    For each one of us, it is different.  Yes, they need studies made.  Yes, our government needs to become active in advocating studies to find a cure, and last, but most important, we need to take action ourselves.  Wear ribbons, write letters, speak up and out.  Hep C is still in the dark closet of denial, it is still thought as a virus that only attacks drug users.  And, that is a fact.  Everywhere I go, I talk to everyone and it is sad how many do not know.
   I have rambled on, sorry...the fatigue, for me, at times lifts and I have to say and do everything in that window of time, before it settles back in!!  Just to verify my facts...I belong to support groups, my orginial doctor, who found this virus, is the asst professer in Indy, who is one of the top transplant doctors in the country and his speciality is HepC research, so I am not pulling this information off the internet or just making it up.
  Have the tests ran by your doctor.  Rule out other things.  Ask tons of questions, I make a list before I go, so I don't get side-tracked.  And always remember, this effects people indifferent ways..what might be happening to you, is not what is happening to me.

   I wish you the best.  Never give up hope and the fight.  

Kat
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Avatar universal
I am glad for you that you acheived SVR..that is the end goal for all of the TXers, of course.
Walrus did 84 weeks of Interferon/Ribavirin and relapsed by week 12. Altho he is "healthy" by all the tests he takes and his liver is fine, he is still feeling quite low most days and cannot seem to shake the blues. (Sorry, honey, for "outing" you)
I don't know what causes this. You'd think once off all the poisons you;d imediately begin to feel better and more hopeful. I know in Walrus' case he does have more TXes ahead of him, but the emotional/physical toll TX took on him seeems to be permanent.
A thyroid check sounds smart, it's a first line go-to in chronic fatigue situations...also I know that the depression that almost always comes with TX is not always ended with TX. Depression will make you tired and Walrus still sleeps a lot on the weekends, just like he did on TX. He's about 8 months out, too, so I wish I had some solid answers.
All the best to you and know that a lot of people care....
Liz
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388154 tn?1306361691
Hi Georg I´m in the same situation as you sometimes i think its on its way to get better.
But most of the times  I must say I`m worse after than before any tx although SVR and 11 months post.

My memory is bad forgot things more than during tx.
As a matter of fact I asked a pastor to pray for me,(I didn´t mention anything about my memory though) that was about three weeks ago.

He was just about to stop then he continued and said there is something wrong with your short time memory almost as if its broken like tissue been torn apart

It needs to heal together he said then he praid for that to happen.

Well that gave me hope, its not good yet just some improvement i think not sure.

I am also very fatigued and that doesn´t seems to improve.
Guess i ought to check thyroids.

Depressed also been on that LDN for two months now hasn´t helped this far.

Today I have had quite a good day,  well I hope it willl ease up for us Georg.

First tx treated 24 weeks, felt better than in 25 yers 3-4 months post and until i started second tx . ( started second 10 months after first one)

My old Man used to say their aint such thing as poison only poisonous doses.
I guess thats what its all about and it varies from person to person.
One thing for sure though, this meds (soc) aint no stuff to fool around with!!

Really hope the new meds is gonna shorten the time of exposure for many people!!

I´m gonna pray for you George,  that you will recover.

Be well!!

ca.
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394687 tn?1290920840
Longtime no see....but could not help but respond to this one.
There is a good reason this tx is often refered to as rat poison.....it basically is and when you are a tiny mouse it takes you down much quicker. I only made it to 12 weeks when they had to pull me off - I ended up with severe autoimune syndrome, unreal pain and in a wheelchair. Granted I started off with RA but hell I was getting along just fine....now I have the whole gambet...RA,Chronic fatigue, fibromalgia and nueropathy not to mention IBS, Mega migrains and memory loss....but hey I can have a glass of wine again with dinner and am not dying of cirosis because by some miricle I am SUV....so guess that counts for something....I get surgery next week to replace all the knuckles on my right hand - won't be able to use it for 3 months....my horses are not real happy about that. Ya know the crazy thing about it is...If I had it to do over...I'd probably do what I did. I just pray they find safer drugs for this and stop acting like we are all just guinie pigs that they can practice on.  This tx is really for the very strong....physically and mentally.
What's that song...only the strong survive?  Good luck and God speed to all of you out there fighting this demon.

Mikkimoe
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Avatar universal
over 4 years SVR Sxs never resolved.  Hepatologist said 6% never will clear.
Liver continues to self destruct but was told the side effects are un-related.
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475300 tn?1312423126
Hey there, glad to see you post.

Hope the surgery helps your hand and you are back up on the horses where you should be.

About the after effects, I have them too.  Fibromyalgia was diagnosed a few weeks ago.  I am about 20 months post TX and honestly don't remember ever being sick so often in my life.  Would I do IT (TX)  again??? Yes I would because the virus is gone.

Denise
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547836 tn?1302832832
Dear St. George,

Although I've only treated once (still waiting on news of 6mo post), I feel like I can relate somewhat.  I am now 6 months post 48 weeks of Pegasys/RIbavirin and still not feeling quite like myself.  I just think it's post traumatic stress disorder, had thyroid and heart troubles during treatment, after treatment, my dad had brain surgery, I was hospitalized, transferred back to university, and now I'm living with one of my best friends and it's not turning out ideally, I hope it won't ruin our good friendship.  It seems like I have fewer and fewer people to trust as I get older.  No one will understand what we've been through, and as of now, it seems like no one is willing to even try to understand.

College is suppose to be fun, but I hardly go out at all.  Everyday it's just eat, study, and sleep.  Sleep is about the best thing I can look forward to besides going home for the weekend, but you know what's sad is that I've also been having trouble sleeping.  On top of health issues, I have to focus on my future, I want to get into graduate school on time and the pressure is increasing.  I'm hoping to get through and take care of business this school year so I can enjoy my last year in college soon.  If not, this worry is just going to continue.  I feel like towards the end of treatment and post, my attention span has diminished into almost nothing, I cannot concentrate!  This semester has been disappointing academically, I felt like I could do better, don't know what I am doing wrong.

Currently, I'm off almost all medication, finally pulling off Neupogen 5 months post treatment.  And off thyroid medication.  I don't want to get hooked up with AD's or sleeping pills etc.  Just want to be virus free and drug free and stay that way!

be well,
Lala
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220090 tn?1379167187
I also have side effects that have not disappeared after being off the drugs for 1.5 years.  I have ADD and can't write much any longer.  I thought I would spend a lot of time writing once I completed treatment, but it's not happening.

My memory is also much worse now.  I do find exercise helpful, but didn't start doing any until a few weeks ago.  I did some kayaking last winter, but stopped once it became too hot.  Now that it has cooled down, I have started once again and I already feel better.

Still can't write worth a damn, but perhaps that will come back one day.  Maybe I need to spend more time sailing, but I need a boat to do that - LOL.
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Avatar universal
"Altho he is "healthy" by all the tests he takes and his liver is fine, he is still feeling quite low most days and cannot seem to shake the blues. (Sorry, honey, for "outing" you)
I don't know what causes this. You'd think once off all the poisons you;d imediately begin to feel better and more hopeful. I know in Walrus' case he does have more TXes ahead of him, but the emotional/physical toll TX took on him seeems to be permanent."

Hard to say if it's permanent.  I was on treatment for 34 weeks and not at the same dosages as Walrus.  It took me 3-4 months to fully recover from the depression and mine was very black to begin with.  We've stopped the drugs but they had a very long time to wreak havoc on our bodies and I'm learning that it's unrealistic to think that recovery is as instant as stopping the drugs.  In Walrus' case, I believe it was 84 weeks?  That's a bloody long time and he's also post-transplant - and relapsed.  It's tough.  For both of you.  

One other thing I'd like to mention and that is.. I don't know if you saw R Glass's post .. he's also been struggling with "blues" or depression post-treatment for an extended period of time and his doctor finally discovered he's very low in testosterone and that it can have effects that are similar to what he's experiencing.  It might be worth checking out with Walrus and he may want to look up Ricky's thread to see what he had to say.

This treatment is tough stuff ... on us and the people around us.  Take care, Liz.

Trish
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Avatar universal
I enjoy fly fishing from my Kayak on the flats in the spring and fall-so relaxing.  I never cared for sailing-too much work LoL.  I had to take off all last year from my work and it was hard to live in the concrete jungle.  Love the Bays and coastal waters off S. Padre-
I was wondering if you've been to the Flower Garden reefs? Frank
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220090 tn?1379167187
I don't know where the Flower Garden reefs are.  Do they have good snorkeling?  Nothing makes me feel better than sailing and snorkeling.  I am going to start another thread about side effects and how people reduce them.

Eric
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394687 tn?1290920840
Oh how I love to snorkle and sail and ride and ski and play and live....darn I use to be like the energizer bunny and enjoy life so much...now I have to take uppers just to get out of bed. I went in for surgery last week and they pulled me off the operating table after hours and hours (darn heart and blood pressure) so they are taking me off my upper for 2 weeks and trying again...think I may do hypnosis again...worked well years ago...gosh we just try anything these days huh. But despit it all I still seem to have my sense of humor and am probably more caring, giving, and humble then I have ever been.


Happy belated Thanksgiving to you all!
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Avatar universal
Mikki- How I've missed you! Its hard to believe a year has passed...I haven't been on here much because I made a promise to myself that, if I finished tx and was SVR, I would finish school...So, 1 more year to go, and I'll have my BS in Health care Administration...And then I can help patients even more...I hope all goes well with you and you recapture your health soon...((((((((((((((((((((HUGZ))))))))))) Happy Holidays! ~Melinda

St John -Thyroid. Definitely get your thyroid checked. Have levels for your TSH (thyroid stimulating hormone) free T-3 and Free T-4 levels drawn. If your TSH is high and T-3 and/or T-4s are low, your thyroid hormones are just sitting there, not being broken down for your body to use...Hypothyroidism can cause feeling cold, fatigue, brain fog, sleep problems, digestive problems, low testosterone, depression, weight gain, and joint pains...Are you taking any B-complex or folic acid vitamins? Many times post tx heppers have vitamin and mineral absorption problems in their gut, and this causes its own set of problems...Good luck fellow hepper...((((((HUGZ))))~Melinda
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Avatar universal
Sorry, the last part of that post with Mikki was for you...I don't know who that St John character is..LOL~MM
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394687 tn?1290920840
good to hear from you....your so right about the vitamin levels. My D was drastically low - had to take serious quantities for a long time to bring it up...will check that thyroid again - was way off before and have forgot about it - thanks for the reminder.  
Congrats on your health care goal....feels so good....taught for over 30 years and guess I still am (horse theraphy) Something about giving and helping make peoples dreams come true just makes us feel so whole again - not to mention what it does for them:-)

let's stay in touch OK
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Avatar universal
I finished 11  months ago with 72 weeks treatment. It was very difficult as I had all the side effects. Now I have newer and horrible side effects I cant believe this would happen. They never really talk about this. Doctors dont know anything about post treatment You cleared so adios and be happy! Unfortunately I now have fibrmalgia and joint pain all over. My thyroid keeps swinging hypo to hyper. I stilll cant sleep without ambien. My memory *****! I really dont know what to do . I hate to be a downer because I should be happy I was Ud at 9 months.I need help and cant seem to get it any where
cassey28
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Avatar universal
To whom will listen: My husband was put on Pegasys & Riba last October, 09. His viral count was 6 million. His liver is functioning normal and his enzimes are normal. Three months ago he had to get a shot for white blood cell and shot for red blood cell. But viral count was down to 43 thousand. This month the doctor did a viral count and found viral up to 800 thousand. So today he took him off Pegasys & Riba. He said no sense in continuing if viral count rising. Still has to take white blood and red blood shots for month. I'm scared for my husband. He has terrible times with loosing his temper and he normally is a happy guy. He was so glad when the count was dropping but now I can seen how worried he is.  Our daughter is a nurse and she is bringing him to another doctor for a second opinion.  Anybody have any info. Has anyone else had to stop using the Pegasys because it didn't work?
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1051313 tn?1284780795
Hi.  First of all if you post a new question, more people will probably see it instead of looking at an old thread.
Unfortunately there are folks who do not respond to treatment.  The treatment  causes anemia and low white cell count too.  As well as mood changes, rage and depression.  A lot of people on tx take additional meds to manage these side effects.
The good news is that there are new drugs soon available that are in trials now that are much better at beating this virus, especially for non responders like you husband.  So there is hope.
I would think finding a Dr. that is more of an expert, a Hepatologist can better treat him.
It seems that most Dr's understand that if you are not responding act sooner than 6 months.
I hope you husband starts to feel better soon.
Start a new thread and you will get some good advice.
Best wishes,
V
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