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Avatar universal

Long term after effects of tx w/Pegasys or PegIntron?

I did tx twice for hcv, thankfully ending tx with an SVR in 2004. I had to stop tx due to heart rhythm abnormality, but was blessed w/the SVR anyway. Since then I have not recovered my strength. I had undiagnosed infection since 1981. Not dx until 2001. Bx was stage 2, grade 2 in 2001, and also had fatty liver. Besides the hcv, I have COPD, Breast cancer and back problems, all which COULD cause fatigue, but I had the same fatigue for 20 yrs prior to these other conditions. I am wondering if anyone is suffering long term after effects since discontinuation of Pegasys or PegIntron? My fatigue was prevalent b4 cancer surgery, etc. I still have more bc surgery and medicines to go. The fatigue I feel is just the same as the fatigue I felt prior to tx, along with appetite loss, trouble gaining any weight, hair loss, stomach upset and the list goes on. Would be glad to hear any thoughts on this..

Thank you..

25 Responses
Avatar universal
Peachy: The fatigue I feel is just the same as the fatigue I felt prior to tx, along with appetite loss, trouble gaining any weight, hair loss, stomach upset and the list goes on.
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Sorry you're still feeling what appears to be the after effects of the treatment drugs. Others have reported similar, and what seems to be a common denominator is that you were fatigued before treatment, you'll probably be fatigued after treatment even if treatment is successful. Moreover it's quite possible you will take on  additional symptons from exposure to the treatment drugs. This is not surprising since interferon overstimulates the immune system, altering metabolism. This can include a worsening of the metabolic syndrome as well as the possible development of diabetes, just for starters.

Of course they're exceptions, but if you read through some of these archived posts you'll see that ending treatment does not mean that many of these symptons end, but it does mean in most cases that your liver damage will either stop progressing or even that the liver will start healing itself. Because of this, where I come out is that the current treatments make the most sense for those with signficant liver damage and those that can afford to wait, should  consider what the drugs may do to the rest of their system while combatting the virus.

-- Jim

http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html


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Avatar universal
hi! i only tx 2mo, have had hcv 25 or 33 yrs apprx.
geno type 1a ,tx using pegasys and co-pegasys.since discontinuing tx ,i now have diabetes type 2, seborrhea,psorriasis, extreme fatique,sleeplessness,had some before is now worse,possible heart murmur- if you go to the forums much you will see same symtoms over and over again! peace and love!
Avatar universal
btw i forgot to mention not only did my blood counts go low they have not recovered in almost 2yrs to where they were pre-tx
Avatar universal
Hello,

Jim made a good point and I should have posted this as a comment and not as its own string.  Sorry everyone.  Anyway, here it is again.  I am 4 months post treatment (24 weeks, pegatron/ribavirin, acute infection genotype 1b)and was just diagnosed with bilateral autoimmune iritis (inflammation of the iris). I did notice my eyesight became a bit more blurry on treatment, but with everything else I was experiencing in terms of side-effects, it was nothing I really paid attention to. I am wondering if anyone else has developed autoimmune diseases post treatment? I remember reading somewhere that some people develop psoriasis, or rheumatoid arthritis as a result of the interferon treatment, but I am not familiar with the eye manifestations.

Anyway, I am currently being managed with potent prednisolone acetate eyedrops. I am just hoping this can be easily controlled. The Hep C treatment really is the gift that keeps on giving!!!
Avatar universal
sorry, but i had lots of energy before tx and now 9 mos post is still have fatigue. do not know the answer but that it is a **** shoot as what affects tx has on one.
Avatar universal
also forgot osteoarthitis- i would honestly say these would be minor inconveniences if i could have cleared and still had 25 or more good years-had this dx for so long i wonder what feeling good and normal is-believe ive ached since 1st onslaught of hep in 1973- and rememeber there are people  who have tx and dont have side effects and are clear
Avatar universal
I am about 10 months post tx and SVR.  Treatment has solved my liver issues but brought some new ones - high blood pressure, hypogonadism, insulin resistance, kidney problems, insomnia, forgetfullness, and some undiscovered ones.  I too have fatigue and do not feel at all like I thought I would.  I was thinking about this today and even with all the **** happening now, I still like the idea that the virus is gone.  I think it gives me hope that, in time, I will continue to recover rather than continuing to decline as was the case before treatment.  

However, at this point in time, I am being treated with drugs to counteract the effects of other drugs.  I was put on testosterone about 3 months ago and last week my blood pressure shot up to 210 over 130.  They wouldnt let me out of the office until I took a bp med.  This (BP)has steadily been rising since I started the testosterone gel.  Endocrine doc doesnt seem to think it is the cause but its the only thing I added new to the regime.  Now I am on some high strength bp meds that seem to be bringing it down.  My insulin is still high though and skin is a mess.  Doc wants me to treat the resistance.  I never had this stuff going on before treatment although I was too miserable otherwise to notice.  But if I had to do it all again, I would have to say that I would do it in a heartbeat - post tx sides and all - it is still better than the alternative.  

One thought however, I think that in retrospect I would hold off on treating post treatment sides for a least a year after finishing if possible.  In my case, I believe that I am treating things that are getting better and the treatment seems to be causing more problems because of this.  It is almost like a moving target after finishing tx.  It gets better but it just seems to take its good old time.  
Avatar universal
You just related my laundry list!  My BP continues to increase after finishing tx, and I am going to need to start BP meds.  (Never had anywhere close to a BP problem before tx), insulin resistance building, along with triglycerides, cholestorol, etc.  Fatigue and brain fog pretty constant.  The Hypogonadism is really perturbing, and for me it comes along with pretty regular ED!  I hate taking ED meds, but they work at least.  Before tx my arousal capabilities, both mechanically and libido-wise were very strong.  Now, its another world!

I have considered pushing for the hormone tests, and testosterone, but I fear the side effects, and I also think there may be more to this problem than just testosterone.  Some of the long, detailed research studies on post-tx sexual issues seem to be perplexed about just what is wrong, and how to treat.  It may not correlate to Testosterone replacement, but let me know if it has any positive effects for you.  How about ED and libido for you?  Any changes, or difficulties?

I think the BP issue is beginning to get noticed by the doctors as a common post-tx consequence.  I am not sure why it happens, and what we nned to do to stay safe, and correct the problem.  I continue to suspect that the BP, and insulin resistance issues have to do with becoming 'autoimmune' from therapy.  Read about the effects of AI disease, Lupus etc. on heart, blood pressure, diabetes, fatigue, etc. etc.  

I fear we may have traded one disease for another.  (Some of us, that is.  I want to clarify that some people do seem to recover from tx without a bevy of problems.  But, I do believe the problem cases have been grossly under-reported, and greatly under- covered by the medical community!)

Best to you.

DoubleDose
Avatar universal
Hey, your still out there buddy.  Good to hear from you. Yeah the libido/ED thing is also an issue and one of the things I thought the Testosterone would straighten out - no pun intended.  The testosterone seemed to help but caused this shrinkage, dizziness, irritability, sweaty, sad thing - little fella went into hiding on me.  

Viagra works pretty well but does not sit well with the flushing and eyesight issues.   I am also worried about taking it with BP meds.  Funny thing D, I was just talking to my wife a day or so ago about the "good old days"  ---- when I was ON TREATMENT!!  Can you believe that?  But really, once the virus was gone and before the Peg and Riba blew out my plumbing, I really felt pretty good - at least compared to how I feel now.  That is probably heresy to say here but it is really true.  

One silver lining though, my liver enzymes and bloodwork are like an 15 year old alter boy!  Gotta think that will eventually bear some fruit.  I havent had enzymes in the 20s in 30 years!  At any rate, nice to see your out there still.  I keep hoping youll pop in and tell us you turned the corner and feel great after discovering that your favorite tv chair was infected with mold spores. LOL  Take care, RTS.  
Avatar universal
Thanks for the reply.  I agree totally, I often felt better on tx than I do now, in many ways.  The first month after ending tx, I thought I was going to feel incredible, for the rest of my life!  Then it all hit the fan.  I guess there is some sort of backlash, or after-effect that ends up feeling worse than when we were doing all the supposedly 'toxic' drugs.  The irony is that the toxicity doesn't really show up until you stop using them.  I really do think our bodies have been seriously altered, and our immune systems, and every other system is now kind of 'whacky'.  

I bet the sexual after-effects are much less discussed in the medical press than the actual cases really warrant.  You have to believe there are many, many more treaters out there like us, who just don't know what hit them.  They may chalk up the post-tx sexual stuff as unconnected, and I'm sure their doctors' encourage that line of thinking....but I can say that most of the male treaters that I have gotten to know over the last five to ten years, have all complained about the same problems stemming from tx.  

I just want to figure out how to fix it!  I agree, I am more and more afraid of using Viagra, for all the reasons you pointed out.  It works fine, but it makes you pay a price...and long term, who knows what it might do to our fragile systems.

Anyway, I can laugh about it every day, and I try to take it all in stride.....have to enjoy life regardless!

Take care.

DoubleDose
Avatar universal
Just a final thought and I am heading to bed to toss around for a few hours. LOL In some of the studies I have read about post tx sides, they have determined that there is actually a difference in the post tx reactions of those who have cleared the virus and those who have not.  

It is SVRs that have higher levels of C-Peptides for example. It is SVRs that have continuing compromised Testosterone.  Now I got to thinking about the difference between SVR and not SVR and my very clear mind stuck on the differnce - our livers have suddenly and artifically been freed of their lifelong burdens and can suddenly take over and start operating again with inpunity.  One of many functions of the liver is that it makes and regulates, many hormones, including sex hormones. A lot of this post tx stuff has some hormonal connection.

I am beginning to wonder if the effects we are feeling are the effects of the largest organ operating in a body that is quite unfamilier with its operations.  Think about the 20 or 30 years that our bodies coped with decreased liver functions.  Our liver preoccupied with a relentless attacker.  Now it is removed.  

My liver is suddenly online - processing and cleansing like it hasnt done in years.  I assume it is also back online in other ways producing hormones and other goop.  I sometimes feel it (the body) is working against itself with the liver doing and producing things that the body has learned to live with or without or to cope with in other ways perhaps. Just a thought, probably too simple to be true but I personally am pulling for my liver to bring everthing else back in line.  How long to get back to normal?  Hope its less than 30 years!  LOL
Avatar universal
I don't understand fully.  You're both Svr but feeling 'worse' than pre-treatment?  But happier?

Were your livers in such a condition that it was necessary to treat and the post treatment sides are better than the 'alternative' - possible ESLD?  Was it a matter of feeling you did not have the time to wait for a shorter more gentler treatment?  

How long did each of you treat?

Breeze
Avatar universal
I personally felt the need to treat, after having the virus for over twenty years (at my first tx in 1998).  I was pushing Stage 2-3 range, and was feeling tired and slow.

I treated for 15 months, with daily interferon/riba and relapsed.  Then I treated for 18 months with Peg-Intron, at a high dosage, and full dose Ribavirin, and lots of Procrit.  I finished 3 1/2 years ago and am still SVR.  I felt great for a month, then got hit with a barrage of after effects, mostly autoimmune in nature.  I never expected that to be the outcome.  I worked like a madman to reach SVR, and expected that once I reached that goal, I would begin to feel much better.  It does not always work that way, and in fact, I wonder if my outcome is not a more common scenario than we are led to believe.  Yes, I'm thrilled to be SVR, and have normal liver function, etc.  But all the other stuff....that is really a major disappointment.  We wreck our systems, and bodies in order to be cured.  A real situation of the cure being worse than the disease.  Well maybe not entirely, but its often hard to pick which was better....pre-tx, or post-tx.  I feel like I have Lupus much of the time, and do not look forward to where this set of side effects is taking me.  

Still, I enjoy life, run a business, lead a very nice family, and have hobbies and interests.  But I have to deal with side effects every day...and night.  Just the reality.

DoubleDose
Avatar universal
I'll offer an alternative explanation on why SVR's have more trouble post treatment than non-SVRs. Frankly, I have no knowledge this is true, but going under the assumption you put forth. Could it be that SVRs have more problems because they had a stronger immune reaction to the interferon than those that failed to clear? That could make sense because the immune reaction is not only what kills the virus but what seems to be causing all the post treatment problems. Just a thought.

-- Jim
Avatar universal
Thank you for your response.  Glad you still  enjoy life and all that goes with it,  but it is a shame that you must deal with side effects every day/night.  :(

Given your Tx Hx...  with multiple treatment and length - hopefully it is just a matter of a longer recovery period - and that these side effects will continue to lessen.  I certainly hope so.

Breeze
Avatar universal
Just read this post, and want to give my SVR laundry list.
Totally impossible to sleep without sleep aides.
Engulfed in a brain fog so dense, can't see the wall in front of me.
Different rashes over my body, and face still not back to normal.
I had plenty of energy before tx, but very little now.
I developed insulin resistance too, but after 7 month of ultra, ultra low carb diet, brought the glucose down to a normal range, and the triglycerides from 220 to 44.
Developed gluten sensitivity after my first tx, which exploded after second tx.
Osteoarthritis of lumbar spine was mild-moderate before tx, now it's considered severe...don't know if there is a relation.
Depression now being tx with Lexapro.
Libido, what is that...it's so totally gone, sex is only a faint memory now.I don't bother to try anymore, equipment is dead, dead as a doornail.
Testosterone way below normal (even for a women adjusted for my age).
At least DD can enjoy some things, I enjoy nothing.
On good days I make big plans, theater, opera house etc, and than I cancel everything or give the tickets away.
I want feel good, go out and do things, rejoin the living, but something is holding me back.
I stopped exercising in Oct last year, don't know why, just stopped. Can't get my arse in gear, like I said in another post, I am in the land of the living dead.
I am totally disgusted with myself...but I would tx again, sides and all.
I am 13 month SVR.
All I want is to find my old self again and I be a happy camper.

Ina
Avatar universal
I can relate a lot to what Ina says. Skin problems persist, metabolic syndrome has gotten worse, and lost interest in things and friends. Part I attribute to the physical effect of interferon and part I attribute to the psycholgical effect of treating for over a year. Akin to post traumatic shock syndrome IMO. Only thing I seem get up for these days are my workouts. I'm hoping that better conditioning will eventually cross over into some of the other things. Also, plan on trying some meditation and Chinese Herbs at some point. Can you believe TM (trans meditation) is charging $2,500 for a mantra these days. LOL. I remember when it was around $200 and I thought it expensive then. Guess I'll just have to use a freebie Mantra I've got lying around.

Would I treat again, knowing everything I do now includidng what happened to me during treatment and the little we know about the newer drugs in the pipeline? First, I'd re-biopsy as I was working with a three year old biopsy. If they told me that I was between stage 2 and 3, I would not retreat even though in this hypothetical I knew I'd be SVR. I felt fine before treating, don't feel fine after treating, plus lost two years of my life. Why would I re-treat again with these drugs???????

-- Jim
Avatar universal
Please come to the tallblonde post at the other side. I can't find the link to the German study.
The Korean acupuncturist I see is an herbalist as well.
He is willing to cook something up for me. Didn't ask the price, because I can't bring myself to put stuff in my mouth I know nothing about.
Read on the other side first, and see what I am planning to get out of this hole.

Ina
Avatar universal
I'll get over there later. Thanks for the heads up.
Avatar universal
Jim - funny you should mention the metabolic syndrome.  My endo doc mentioned this to me at the last visit.  Something he wants to address soon.  He may have to address it sooner rather than later.  

Just came back from my primary who is monitoring my skyrocketing blood pressue - todays reading 162 over 109 - actually not bad considering a few days ago I was 200 over 120!  Little sidelight is that they tested urine and found some protein and think that kidneys may have been affected as well.  I understand that metabolic syndrome does manifest itself with protein in the urine.  Never a dull moment. By the way, nice call on the SVR immune system idea.  That is probably a better take on it than mine.  

Sandy - I treated for 48 weeks.  Was feeling really bad before I began at stage 2-3.  Really miserable with symptoms galore.  This is my fourth try and I am definitely happy that I did it but I guess I am fighting some expections that life would be grand after the virus was gone.  The things going on now are new.  They, so far anyway, are nagging things that I can live with.  I just thought it would be better - that I would get "back to my old self"  you know.  It hasnt happened yet but I am keeping my hopes up - if this was all I had and I never had the hep, this would be a walk in the park.  Given the struggles living and getting rid of the hep, I have little patience with any new illnesses.  I am also post traumatic I think as the treatment was a freak out for me towards the end and even afterward when I got a false postitive test at 6 months post.  It really would be nice to get a break from it all and just live normally for a while.  But it is still early for me, only 10 months post - I have my sights on 1 year and possibly a nice warm summer, couple of weeks of vacation and who knows - it may all be a fond memory by Sept.  Thanks for asking.  

Ina - boy I can relate to your situation, especially the part about the planning and canceling.  I have big plans then back out at the last minute.  I want to be a part of things.  I want to want to do things.  When it happens, it just doesnt work yet.   Happy camper - boy that would be nice.  
Avatar universal
My girfriend called last week. She said she was getting 2 free tickets to the opera...I said I'll go.
She just called again, no tickets. I went on and on...how terrible, what happend, what a shame, I really looked forward to going, blah blah blah.

Hahaha, I am so happy I don't have to go. I can stay home and watch the world go buy.
We were supposed to go Sunday.

I tell ya, I am upset that I don't want to go, that I don't want to do anything. Like you I want to want to do things, but it's not happening.
And nobody here seems to have any suggestions.
I wish somebody would come on and say...I felt exactly like that, and I did this or that, and finally I saw the light of day. That would give me some hope.

Ina
Avatar universal
You just reminded me that I've had protein in my urine for around a year now. Probably should see my urologist as my kidney scan showed some stuff as well. Just been avoiding doctors lately.


Ina: wish somebody would come on and say...I felt exactly like that, and I did this or that, and finally I saw the light of day.
--------------------------------------------
Yeah, I felt exactly like that and I just pulled the covers over my head and went to sleep. When I finally woke up "I saw the light of day" so I got out of bed, pulled down the blinds and went back to sleep.

-- Jim
Avatar universal
I'm off peginterferon for 6 monrths I cleared hep-c after 6months but had to do the whole 48 weeks. Anyhow I still feel depressed as hell and all kinds of other stuff. Is this going to be permanent?
163305 tn?1333668571
This is an old post from 2007.
Most these people don't come here anymore and the information may not be relevant.
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