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Avatar universal

Post tx side effects??

looking for feedback on post tx side effects. i've seen posts from people that have listed some pretty troubling health issues after treatment. for me the sides during tx have been bad enough, hearing of problems arising from tx afterwards bothers me.

also for those interested there's another board that doesn't have post limitations and is of a newer more user friendly format. i have no affiliation with this board but did email the administrator and asked if i could invite others to the board, she said it was fine to do so. as i mentioned in another post while moral and emotional support is important for me personally i want to become better edcuated, discussing information from those that have tx experience and have been doing some research is of great benefit.

i hope the owners of this board don't object to my mentioning the Hepatitis C Association, this is in no way a solicitation. just looking for more knowledge and an unrestricted (as far as questions) board would be helpful.

thanks
50 Responses
Avatar universal
I have not been here in quite a while, and even before that I was a lurker and not much of a poster.  Sorry to burst in on this thread, but I have some tremendously good news I’d like to share with those of you contemplating or in the midst of treatment.

I started treatment as Type 1B with a 2.5 million viral load.  My biopsy showed mild liver damage, and although I certainly had the option to wait, I decided to go ahead and treat to avoid the possibility of accidentally infecting anyone else, and while I was younger (49), stronger, and still possessed with a fairly healthy liver.  I completed 49 weeks of pegintron/ribavirin in April.  During treatment my Hgb  dropped as low as 9.2 but I never used Procrit.   We did reduce the riba by one pill a day after I’d been on treatment for quite a while (was clear at week 12), and that brought the Hgb back up somewhat but still didn’t affect the ultimate outcome. I worked 40+ hour weeks the entire time, with very little time missed.  I only lost five pounds, gained that back but no more than that.

I got my six month results yesterday – and am still negative!  SVR achieved!  HOORAY!

I lost a good bit of hair but it’s back now and thicker than it’s ever been in my life.  My nails are healthy again – in fact they too may be stronger and better than before.   I have most of my energy back, although I am dealing with some neck and back problems that may explain some of the lingering fatigue and pain.  I hardly ever need the Tagamet that I lived on before treatment, so I think my acid reflux has been helped significantly.

I’d be lying if I said it was an easy 49 weeks.  It was hard – terrible – but it was absolutely worth it and I’d do it again tomorrow if I had to.  And for those of you who are now on the path:  STAY THE COURSE!! It’ll be over before you know it and you’ll be sooooo proud of yourself when it’s done.

There are many people in this forum that are far more knowledgeable than I on the technical and medical aspects of treatment.   I do have few words of advice, however.  1) Keep a positive attitude, and commune daily with your Higher Power; 2) Find a physician and staff that you trust implicitly and with whom you can communicate well.  It took me two tries to find the right doctor, but I tell him now that if hepatitis C is ‘the dragon’ then that must make him ‘my knight in shining armor’.  3) Take biotin for your hair and nails, and use Nioxin shampoo (you can get it cheap on eBay); 4) Take sublingual B-12 daily; 5) Buy an alarm wristwatch and two sets of seven day pillboxes.  Set the watch to alarm twice daily, and set up your am/pm doses for a week at a time.  Take them as soon as the watch alarm goes off – there’s no way to stress the importance of being consistent with dosing so that the medication levels remain constant.

I wish the best of luck to those in or starting the fight, and sincerest congratulations to those who have crossed or soon will be crossing the finish line.  Thanks to Phil and Cindy for hosting this site, and thanks to everyone at this forum just for being here . . . as I said I was more of a lurker, but it was sure good just knowing you all were here and that I was never alone (misery loves company, maybe?)  Anyway - Godspeed to all!!
Avatar universal
crushed; I often wonder if some of the folks complaining of post tx effects actually had them prior to tx in a milder form and a more severe form was developed during tx. Plus, how much is also caused by the O2 deprivation to tissue from the anemia? Many conditions are linked to hep c; thyroid, diabetes, gallbladder, neurological, vascular, etc, that can be worsened during tx. I would ask those people if they remember the symptoms to some extent prior to tx.  That said, it is so wonderful to speak of tx in the past tense, and we all eventually do that.  It is going to be a yr post tx in a wk, and my hair has more volume, nails are growing better than before tx, and generally I feel the same or better than before tx. the fatigue(pre tx) is not there, a mild depression I felt for yrs, hardly noticeable.  I can't see any lingering effects, but as Honey said, it takes a while to fully come back.

Invictus! you were indeed undefeatable! Live a happy hcv free life. It is worth it! even if we don't think so while going thru tx.
Avatar universal
Did you have any muscle aches/pains or weakness either before or during treatment, and if so, did that resolve?
How about strength, like do you feel physically better able to do things that maybe you couldn't have before?

One reason I feel strongly that those who are cleared should continue to have a presence is, that these are important questions that only they can answer, and everyone is different. And, the answers to these questions might change a decision about treatment.
Avatar universal
that is a reason each time I think of letting go of MH and let others fend somehow, I decide against it. People need to know what happens after, and you are correct it weighs on tx decission. It did for me, listening to the post treaters, I would say; "that could be me in a year or so".
I did have aches and pains; herniated disc, bilateral carpal tunnel and some other joint aches. It was the rheumatologist who finally informed me that it was not in my head, that it was hcv. They did seem worse during tx, and are still present to some extent post tx. I have read others said that theirs went completely away, mine haven't. It could be that whatever damage hcv was causing, became irreversible in my case. Another reason to consider if extrahepatic sx are felt. Would waiting cause irreversible damage to that tissue, even if no significant damage happens to the liver? Hcv is so complicated. I would say that even the aches are still there, (old age perhaps?) they are easier to tolerate without the overall fatigue adding to it.
glad to share
Avatar universal
8 months post tx here-only residual effects far as i can tell are hypo thyroid which in my opinion isn't a bad trade for SVR-pre tx I had arthritic like pains in joints daily that are gone now & blood sugar is normal (went sky high pretx that lead to dx)-lost 10 pounds during tx had it to spare:)and have kept it off-all in all i can honestly say I'm in much better health now than before tx-granted it was one heckuva rollercoaster ride - but well worth it in the long run - I do agree with Cuteus in that I think alot of problems that develop during tx were probably hiding and just waiting to "break out" or brought about by untreated anemia
Avatar universal
I'm not aware of any studies on the effect of long term riba-induced anemia, but I'm speculating it can't be good. The thing to keep in mind is that while Procrit is a lifesaver for many of us, it doesn't necessarily get rid of the anemia, so much as reduce it. Right now, I'm on 60,000 units of Procrit a week and still anemic. Many others have found themselves in similar positions while on treatment. As long as we treat with ribavirin, this is something to consider.

-- Jim
Avatar universal
Due to my occasional carpal tunnel symptoms, and muscle ache/pains, I have done a ton of research on that stuff. I have read most of Travell and Simons Trigger Point medical text (2 volumes, a ton if info on each muscle)

One thing I took notice of in there, is that viruses are a perpetuating factor to trigger points (muscle knots). Muscle knots can actually be the cause of pain in those with arthritis and disc herniations rather than those causes by themselves. Some people with those don't have the pain that others do. The virus is myotoxic in nature. Trigger points are actually toxins that have accumualted in muscles-they need to be released, toxins moved into the lymph system, and drinking plenty of water to flush them out. Then muscles (which have a memory) need to be re-trained to re-learn what is correct.
My thought is, that the virus is toxic, as is the treatment (any drug we use actually, some more than others). Could it be you have trigger points that need to be released? As a side note, a herniation and related symptoms wouldn't be lumped in with HCV (for any reason I know of) but even so, trigger points might be at least a contributing factor.

I started drinking 1 teaspoon of apple cider vinegar in a glass of water daily. I know others who take more (and they are healthy people). It is supposed to be very good for detoxing the liver and kidneys, and helping flush crystals that accumulate in the joints and help arthritis. After a while, I started to feel better, but the last week hasn't been as good.
What is interesting though, is that my massage therapist and chiropractor have both noticed significant changes in my muscles since I started taking it.
My massage therapist tells me my muscles are much more pliable, and the knots release easier.

One suggestion I would have for you is, to find a good massage therapist and find out if trigger points are at least part of your problem. The longer you have had them, the longer it takes to work them out. But it is possible that you have them, and the virus and medicine just added to the toxins, and a massage therapist might be able to release them and help move the toxins into the lymph system. If you do try that, drink a lot of water before and after the massage. Dehydration can turn the fascia which is found over the muscles from a fluid to a gel and can cause problems in itself. If you have ever cleaned chicken, fasica is that thin white film-like substance under the skin and over the meat.
43671 tn?1205930871

You must be flying high today my Friend...Here is one big...


<font size="7" color="#ff3300">Congratulations</font>

You gave some very good advise also..


            God Bless

             TonyZ
Avatar universal
Hi Crushed,,,,9 months post here and nothing lingering from the tx.  However,,,it has taken the full 9 months for me to clear all the sides out.  I orginally thought after stopping the meds,,,in about a month,,,I would be normal again and that just wasn't the case for me.  I do have at times that feeling of brain fog but am hoping after the year is up,,,that will lift...
Avatar universal
I am open to new ideas, I have never heard of negative effects from a massage. Just thinking of one makes me feel relaxed. I do have trigger points, I can feel them, and so could the rheumy, but she stated I did not have "classical symptoms of RA" my rheumy factor had been high for yrs, and I have not tested for it post tx. Need to.  
Where can we read about the trigger point release theory, because I am sure many consider it just that.  Any studies out there that we can read?
50's is not old enough to be feeling so achy, and I guess I should not settle for it yet. maybe when I am 70.
If you have any links or URLs please post them.
thanks
Avatar universal
I am over two years post-tx, and still SVR.  My symptoms are varied, and come and go regularly, BUT are not as bad as one year after tx ended.  I have periodic neck, mid-back, and hip pain, but not nearly as bad as before tx, or during tx.  I have bouts of fatigue and then periods of boundless energy.  Waking up is still hard, and I feel groggier than is normal (for a normal person), but once I am up and going for the day, I am usually fine, with lots of energy.  I am much more sensitive to the sun than in prior years, and have a sort of 'lupus-like' reaction to excess sun exposure.  While at the beach this year, I noticed that my cheekbones got the typical red rash, my joints started aching pretty severely, and I felt very fatigued.  About a week after returning, I felt fine.  Same thing happened in August on a beach trip.  So I have to believe some sort of autoimmune reaction has developed, either from the years of HCV, and/or all the interferon.

My eyes are the most irritating issue, and they are more dry and gritty than ever, flaring up worse some weeks, and seemingly functioning almost normally other weeks. Tinnitus is constant, but had developed over the years from the HCV.  I do not have the same gastric problems as before and during tx, and my skin, hair and nails are much, much nicer in every way.  My coloring is normal, with healthy pink tones.  My thinking is getting clearer every month.

Lingering concerns:
1.  Articles that claim HCV may persist at low levels after SVR, in various organs and systems.  Could be cause for the many post-tx symptoms.

2. Research studies showing 30% to 50% of SVR's continue having debilitating fatigue as an ongoing symptom.

3.  Concern over HCV being sialiotropic and lymphotropic, as well as the already understood hepatrophic.  ( which would imply that it could live and replicate in salivary, and lymphatic cells, rather than just blood and hepatocytes)  There are plenty of recent research studies claiming that this is the case.  Does this imply additional transmission issues from salivary to salivary system??? (kissing, etc)  Would the virus remain only in those cells, and not be detected in blood? Are there organs that continue to carry HCV in some SVR's long after tx???

4. When will the medical community provide proper study and dollars to answer the above questions, and to provide medical treatments for any lingering problems.  How about addressing fibrosis AFTER SVR, therapies to decrease fibrotic structures....

5. When will doctors work ACROSS the disciplines, to better understand the problems caused by HCV. (hepatologists, rheumatologists, GI's, Oral Surgeons, ENT's, Hematologists, etc.)

Overall, I am much better off having done tx, and probably have dodged a deadly bullit...but there is more to be done for all of us, and more to be understood.  HCV is much more complex than ever thought in past years...and with many more consequences.

DoubleDose

43671 tn?1205930871
I am 11 months post TX. I achieve an SVR status after three rounds of TX.
My post TX Sides were mainly Physiological. I did have some fatigue and joint pain that lasted for six months post TX, but have gotten much better in the last 5.
  My brain fog got worse for about six months, also my sleep pattern sucked until about 2 months ago. It took me over 16 months to be rid of all the SX after my second round of TX.

<font size="2" color="#6600CC">But remember each person is so different. Many have felt great 1 to 2 months after tx.</font>


         Blessings in your day

                  TonyZ
Avatar universal
I have what seems like a million links. The Myofascial Pain and Dysfunction medical texts are really written for docs and are about $180. It's also about 1500 pages or so in 2 volumes, but it is the complete work on them.
A cheaper alternative for $13 on Amazon is the Trigger Point Therapy Workbook by Claire Davies. This book was good for teaching me how to work on some of my trigger points myself.

This link on the scalene muscles is for those who have carpal tunnel symptoms. Most don't realize the problem could be starting in the neck.

http://www.amtamassage.org/journal/fall02_journal/scalenes_pg2.html

This is a good one.
http://www.ultimatewatermassage.com/massage-types-trigger.htm

http://thyroid.about.com/od/fibromyalgiacfscfids/a/devinstarlanyl_3.htm

http://www.activemassage.com/triggerpt.htm --click on the connective tissue massage link on that site also.

http://www.sover.net/~devstar/trpdef.htm

http://www.relaxandrefresh.com/massage-types-connective-tiss.htm

Travel and Simons reference a ton of studies in their medical journal, but I don't know if it is practical to buy those texts. I bought them because I was desperate for answers, and had been told often that I had a lot of active trigger points.

Funny thing, my last deep tissue massage did not hurt, and they almost always have. My wife felt the same thing. We think it is the ACV as the therapist noticed a difference in my wife's muscles as well.

I do want to share a story that might seem a little odd. At the end of my last massage, She did some Reiki on me (at my request, as I have been reading about it). I should give some background first: I hurt my right knee playing basketball years ago, and never had it looked it. It still isn't right, and sometimes I get this ache in my sacral area, and my L5 nerve sometimes feels irritated when the chiro palpates it. When I asked him about it, he asked me if my right knee had been bothering me, and I said it had been recently-there was a connection. When my sacral area aches, my thighs generally feel weak.
When the therapist went to the sacral area for that chakra (very light pressure is used-not like a massage or anything) I got a strange sensation of pins and needles where her hand was, and within a couple of seconds, went down my right leg and right to my knee, and the calf started to twitch. When she finished the treatment at my feet, the right foot felt a similar sensation, and again, it went to my right knee. This time, my hips did a violent twitch.

Not only was that experience fascinating (and kind of strange), but I think it was showing me just how much we don't really know about our bodies, and therapies, etc.

By the way, I have more links if you want.

Avatar universal
Congratulations on your great news!! Stay well. Mike
Avatar universal
OK i guess i'll run the risk of posting this i hope it doesn't ruffle any feathers. i was just over there and the admin had posted some new info on interferon and it's effects on vison. she often posts info from the medical community.

here's the site if anyone wants to sign up

http://hepcassoc.org/messbrd/index.php?
Avatar universal
once every so often, articles get re-posted at different forums about possible side effects of the medications. It is not necessarily a new finding. Most of the folks that have decided on tx, have read about all POSSIBLE sides of tx, but of course they are all not PROBABLY going to be experienced by the majority on tx.
There are some forums that have their own agenda. That is why I like MH, there are no hidden or personal agendas by the owners.
TY for the info.
Avatar universal
Bravo, Invictus!   Hearty congratulations on your victory and thanks for posting that solid advice for people just starting out.   As another (former?) 1b, btw, your news just made my day.  

I'm 2 1/2 months out of tx.   Given how hellish tx was at points--I'm one of those sensitive autoimmune types--it's amazing how quickly and how well I've come back.  My chief worry at the end of treatment was about my eyes, as around week 58 I was incapable of reading even very large print.   Had constant shooting pains in both eyes, "northern lights" ocular effects, and even wearing sunglasses did not help with extreme light sensitivity.   All of that began to clear up after a week without riba.   Ditto the bad headaches,  the poor balance, the inability to get my TSH stable despite 275 mcg daily of thyroxine (!), a mental condition close to generalized dyslexia of the brain, and so on, ad nauseum.   Oh yeah, that too!   My chronic nausea cleared up after 24 hours w/o ribavirin.   A month out, my  PCR showed negative.  I test again in mid-November, this time with confidence.

My muscle strength is slowly coming back and nasty muscle spasms no longer interrupt my sleep.  Still pale as a ghost, and the hair is scraggly, but it's kind of fun looking goth.  Do I have any advice ?  Well, the first law of getting through tx is to keep the faith. Do whatever you have to do to stay the course, educate yourself as fully as possible about every aspect of this disease,  listen to the music you love and dance your way through treatment, even if you can only muster a twitch and a hop or two, and don't be afraid to try alternative approaches to wellness.

Couldn't Think of a Nickname, I dub thee Rolf!   Or Finger on the Trigger.
What you say makes a whole lot of sense.    Good of you to post all those references.
Avatar universal
Funny nicknames, I guess there is a huge difference between rolf and rofl! lol

Funny thing is, I have learned enough (because of my own issues) to actually do some basic work on people. My wife couldn't turn her neck all day (we both work on computers a lot) and after 10 minutes of working her traps, one stretch of the neck cracked it, and she had complete range of motion back. I was like, wow, I did that?

Next on my list is I would like to take a Reiki 1 class. But if anyone wants more links on trigger points, I have a ton of them.
Or, the way I found them was by doing an internet search, and looking at a lot of links.

I have one other theory about trigger points and HCV, and I have discussed this with my PCP, who was also a physical therapist, and very open-minded. He is not a hepatologist, but has treated some in his office for HCV.

I theorized that many of the symptoms we experience like nausea, dizziness, neuropathies including carpal tunnel, balance problems, fatigue, etc., may be due to trigger points in those infected. Those are symptoms of the virus, but also of trigger points. HCV, being an inflamatory disease, could be inflaming muscles and nerve endings, which could be causing a tightening or spasming, etc. Plus, the stress we are under, is another factor in maintaining trigger points.
My conclusion is that maybe the 2 issues, although very different, are really connected to those with the virus. I am sure many hepatologists are not well-versed in trigger points, and many trigger point therapists know little about the virus, therefore, the 2 together don't get studied. My doc actually agreed with my hypothesis, and thinks there is something to it.
People like cuteus got diagnosed by her rheumatologist, and cute says there are trigger points present as well.
I do believe that damage can be undone with a good detox, etc. What that is, I don't know. I do know that our bodies are constantly creating new cells to replace old ones. Maybe removing the virus is only half of the answer to restoring optimum health.

By the way, I am not a doctor, but I did stay at a Holiday Inn last night.
Avatar universal
sorry to cut in on here but couldn't get in on a new one.  i need advice i am on #5/48 will do #6 this week.  I have been doing well but all of a sudden my hgb dropped to 9.8.  my riba was reduced 200 mg last night & they are talking about procrit, just waiting for a rx.  the thing is i feel great today.  First question is this...can the one less riba ALREADY make a difference in how I feel?  It seems too soon.  The other thing is...i begged them not to lower in but i am in a study & have no control.  I am waiting on results of my 4 wk pcr.  this has really gotten me down.  i don't know what to do..i am afraid that this has ruined my chances for SVR..it is sooo soon in the game to lower it.  any advice?? I have a call in to the doctor now to see if i can take the 200mg more tonight since i feel so good.  do i quit & go on treatment privately & therefore have a better control over treatment?  I am so confused.  Does anyone know one anyone who has cleared after a reduction in the 5-6 week??? (52 yrs female, VL 9 mil, 1a, stage 1-2 grade 1)  thanks
Avatar universal
Invictus - Congratulations!  I've been having a rough last two weeks.  I'm about 8 months into a second round of tx.  Lost my mental capacity at some point to keep track of number of shots.  Just wanted to let you know I am so happy for you, and that you've have boosted my day.  Wanted so bad to throw the rebetol out the window this morning.

Jim - You mentioned you're on 60,000 units of Procrit.  What's your hgb level hanging around these days, and what dose of riba are you on now?  I've been on 80,000 units of Procrit for about two and a half months now, and went from 600 mg of riba, to zero for one month, to 200 mg last month, to now 400 mg...which I'm now feeling horrible again.  I was at 9.6 hgb two weeks ago, but my suspicions are that it has dropped significantly...can hear my breathing in my ears again, muscles burning when I walk uphill, etc.  Anyway, curious to see what your riba is at.  And I hope you're doing okay.

2irish - Just my opinion, having had to deal with hemolytic anemia from riba for two years now, I'd really push your doctors to put you on procrit.  It takes at least 2 weeks for it to kick in, and it just seems like it couldn't hurt.  My first round of tx, they kept waiting and seeing, and by the time they decided to intervene with procrit, it was too late.  My hgb was too low, and I had to discontinue tx.  Before I began my second round, they tried to boost my hgb with iron supplements.  And when that didn't work, they put me on Procrit before I started tx.  First time around, I stayed on tx 3 months.  Second time around, I'm in month 8...hoping to stay the distance despite lowered riba.  Hope it goes well for you.
Avatar universal
How much do you weigh, and how much riba were you taking before the dose reduction? Also, what was your pre-treatment hemoglobin level and what was the date of the 9.8 hemoglobin test and the hemoglobin value and date of the one before? As you know, there are no doctors here, but hopefully we can point you in some directions you'll  find useful to discuss with your doctors.

-- Jim
92903 tn?1309904711
My understanding is that by week 4 your riba levels should be pretty stable - they're not going to swing too much by skipping a pill- I would think.  

Here's what I would do - not neccessarily what anyone SHOULD do.

I'd push the procrit through insurance. Sometimes you can grease the wheels.

If I felt OK I'd probably 'forget' the lowered riba dosage. If I ran out of pills early, I'd let them know ahead that there just aren't enough in the bottle, so as to get more. "Well, they're not in the bottle, I don't know what else to say".

Since it is a study, as my brain cleared later, I'd probably point out that I had been pretty forgetful, and the missing riba pills could well have gone down the gullet as scheduled.
Avatar universal
Tricky issue.  Let me just say that it is not uncommon for people on treatment to try to tough things out as long as possible for fear of dose reductions or being yanked off altogether.  It's a balancing act, to be sure.  After many months you actually develop an instinct about what is safe and what is not.  As for the present,  short of severe chest pain or  breathlessness that makes it diffccult to move, I personally would maintain regular riba dosage.   Again, that's just me.   The old adage about listening to your body truly comes into play here.   But all the research suggests that in the intial 12 weeks  maintaining full riba dosage is crucial to longterm success.  By the way, I can't encourage you enough to go to some good research sites and read up on this issue.  Please do not rely on any of us here, or even your doctor,  to summarize information for you.  Lots of us have found that we knew more than the doctors and nurses who were "overseeing" our treatment.  Self-defense start with you, and only you.    Try:

hivandhepatitis.com--articles are beautifully indexed by topic
hcvadvocate.com
janis7hepc.com
natap.org

Btw, are you familiar with the weight/dosage standards for riba?  Make sure your doc is not underdosing, and therefore, undercutting your chances for SVR.    Best of luck!


92903 tn?1309904711
Hmmm - the chest pains would make me less inclined to take on a rennegade mission. Can't imagine getting kicked out for coming up a few pills short though - but I have never been in a study so I won't comment on that.
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