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

[Invictus]

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!!

[cuteus]

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.

[couldn't think of a nickname]

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.

[cuteus]

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

[woodbeegood]

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

[jmjm530]

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

[couldn't think of a nickname]

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.

[Tonyz]

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

[honey11]

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...

[cuteus]

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

[DoubleDose]

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

[Tonyz]

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

[couldn't think of a nickname]

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.

[mikesimon]

Congratulations on your great news!! Stay well. Mike

[crushed]

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?

[cuteus]

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.

[Califia]

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.

[couldn't think of a nickname]

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.

[2irish]

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

[Wasabi Pea]

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.

[jmjm530]

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

[GoofyDad]

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.

[Califia]

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!

[GoofyDad]

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.

[Califia]

2irish:  There's nothing wimpy about being prudent.   Those symptoms would give me serious pause, too.  I'm with you, your doc and Goof on this one.  Best of luck, and I hope your Procrit arrives very soon.

can't think:  Magnesium has calmed me down more times than I can remember.  It's great for meltdowns, in every possible sense of the word.  (Ahem.)

[layla]

I have not been around much but I am 17 months post tx and I am SVR. Before tx I had terrible joint pain and was getting very tired. I tested positive ra factor before tx. I had a weird "sickness" that hit me every month or so and I ended up on the couch for a few days. Doctors nver figured it out. I was tested for malaria along with many other things since I traveled intensively. I started tx with no sx for months then they hit hard. I later found I it was my thyroid. It was a very long tx. I did full tx for 18 months since I was not clear at 12 weeks. The problems I had before tx went away and have not been problems. It took a good year to get rid of many sx. Now most everything is back to normal with the exception I am still trying to get the right thyroid dose so I do have issues around that. I tested normal for ra factor at my 6 month post tx labs. Mt doc had told me that would be the timing. I wish you the best. LL

[Wasabi Pea]

You know what's the most frustrating?  It's that most doctors in this field KNOW how procrit works, know the effects of riba, and yet, there are some who still hesitate and hesitate before rx'g it.  Now they've come out recently with articles citing studies that it's more cost-effective to place patients on procrit instead of discontinuing.  I hate to be crass, but DUH.

A good example is my first round of rx.  I went from a VL of around 1 million to 800 copies.  They waited too long to intervene with procrit, discontinued the whole thing, and told me to live with it.  It took me a month to get over that and have the idea of an appeal or second opinion dawn over my rx-clouded brain.

Of course, you can have a second opinion.  Of course you can insist on a course of therapy...within the bounds of your insurance coverage, of course.

So we tried again.  The stupid thing is, because my first doctor wasn't aggressive enough and waited too long (and I am still angry because I only met with him once...everything else was conducted through the NP, and he wouldn't return my calls personally), I lost my treatment naivete (which made me ineligible for a particular study I would have loved to have gotten in on), I may have built up some sort of interferon tolerance (who knows), I lost a large percentage of my waist-length hair and got to sport the lovely Chia Pet look for a while, et cetera, et cetera.  The sad thing is I was so close to becoming undetectable.

Now they have had to pay to start all over.  But the cost isn't just for employee time and prescriptions.  I think the emotional and mental cost has been greater.  

Snort!  Sorry for griping.  I just get so mad when I think about how it all could have been avoided.  It's not that I expected a guaranteed SVR, but I did expect that this doctor use more common sense than he did.  Anyway, the biggest lesson learned from all of this is do your own research.  I'm glad you found us before you started rx.  I wish I had done the same...but nonetheless, I'm glad I'm here now. <G>

BTW, how are you feeling?  You've had quite a rapid drop in your hgb.  Just hang in there.  I think anemia has a lot to do with what we all refer to around here as "riba rage."  I think a huge part of that is just plain not feeling well.  I'm starting to contemplate ADs at this point.  I just don't like feeling so sad and up and down all the time.  But it really does help to know I can log on and find people who are going through the same thing and are cheering and encouraging each other along.

[BNR]

FYI...I am 2 yrs post tx. Before treatment, only side was fatigue.
Background: 1b;  have treated 3 times: (1) old interferon :didn

[Wasabi Pea]

Here's the original site where I found the study regarding thalassemia patients treating for Hep C.  There's not a whole lot on it, and I really don't think that they've published their findings yet.

http://hemoglobal.org/researchinfo/thalassemiaresearch.htm#hepc

However, I was referred to the doctor (hepatologist -- I'm not sure we're allowed to say names on this forum) who ran this study.  He's been really wonderful, and they've agreed, as part of their research protocol, to first test me (for free) to see if I have a particular beta gene that both my mother and her sister have.  

But it's my understanding that he works closely with a hematologist specializing in research and treatment of thalassemia patients.  Anyway, he has treated a lot of thal patients for hep c, and transfusions seem to be a ready and much-used option for keeping patients on tx long enough to obtain results.

It's my understanding that transfusions are often the treatment protocol for thalassemia major patients anyway as they often suffer from anemia, low hgb.  That's probably why these doctors are not nervous about administering transfusions.

(If you're not familiar, loose definition of thalassemia are basically mishapen, inefficient RBCs, similar to sickle cell, but different shape.  My cousin's are tear-shaped.  Mine are wrinkled little melons.  On the bright side, difficult to catch malaria. :))

Fortunately, after much crying and bugging, I was referred from my GI in my HMO to an actual hepatologist in my HMO.  I showed him all of the emails I received from these various specialists, and he has agreed to work with them.  He didn't even blink about the idea of the transfusions.  The very idea seemed to make my reg GI doc quake in his boots.  He basically told me he's very conservative, that this is only a community hospital, not a research facility, and that he doesn't feel comfortable with following what some other doctor says.  But....if I can get the hep doc who is within the network to agree, well, then....<eg>

We'll see what happens.  I have yahoo'd and google'd different variations of "using transfusions to treat hemolytic anemia," but haven't found anything worthwhile as of yet.  Obviously, the biggest fear from tranfusions (outside of catching something else) is the resultant increase in iron.

Oh, wait.  Try this:

http://www.thalassemia.com/perspectives8_03.pdf#search='thalassemia%20hepatitis%20c%20therapy%20Dr.%20Paul%20Harmatz'

It's a thal newsletter, but it has a small article by Dr. Paul Harmatz and Ellen Butensky that makes reference to the "increased need for transfusions" while treating with combination therapy.

The point is, I know it's done.  I know GI docs hate to do it, as a general rule.  But thal docs pretty much have to do it.  They're comfortable with it.  Unfortunately, because of that aspect, that's why there are so many thal patients now dealing with hep c...the ones that received transfusions before screening was in place.

I'd be interested in hearing what your doctor's take is on this in any event.  I'm still trying to get my reg doc's head out of the sand.  Wish I could just transfer to the reg hepatologist.

Hope this helps somewhat.  If you google hep c and paul harmatz and transfusions, you'll find more, I think, on transfusions.

[Califia]

Please tell me you live in the SF Bay Area!  :)

Two random comments.  First, I'm fairly certain that the muscle spasming during treatment was due to recurrent mineral deficiencies.  I found myself taking huge amounts of calcium, magnesium and potassium to keep things under control.   Second,  you might be interested in knowing (if you don't already)  that in Traditional Chinese Medicine, liver disease is thought to indjure the "tendons,"  i.e. muscles, as well as the organ itself.   (And also, by the way, the vision &  the nervous sytem.)   Kind of jibes with your theory, doesn't it?  The importance of muscle flexibility can't be emphasized enough.

[jmjm530]

Pre-tx Hgb was 14.9. At two weeks it was 11.4 which brought me to the ER practically unable to walk. Started 40,000 u/wk Procrit at week 3. Hgb stabalized between 13.5 and 14 through week 18. At week 30, Hgb dropped to 11.9. I started 60,000 u/Procrit per week bu Hgb hasn't budged. Actually I inject 40,000 units every 5 days which works out to same thing. Last CBC was two weeks ago at week 33. I'm not optimistic based on how I'm feeling but we shall see. I have stubornly remained on 1200 mg/ribavirin throughout tx, except for weeks 2-3 where I increased dosage up to 2,000 mg/day and the week after that when I stopped riba because of the anemia. However, even with the stoppage, I still averaged 1200 mg/day for the first 12 weeks and I had more than a 3-log drop by week 2 and was non-detectible by week 6. I started tx at 176 lbs, I now weigh 149.
I understand that the next step is to reduce the riba should the sides become much worse. Given my age and family cardiac history, being anemic for so long has given me concern.

-- Jim

[Wasabi Pea]

Wow...I'm impressed you've managed to stay on the full dosage of riba, especially at your weight.  I started at around 176 as well, and they dropped me to 1000 as soon as I dropped below 160.  But I've been hovering around 160 since.

Now that you're at week 33 or so, have your doctors suggested perhaps lowering your riba?  I'm just curious because my NP told me that it's okay to lower the riba towards the end of the tx, but not so good near the beginning.  

Also, have your healthcare practitioners ever brought up the topic of transfusions to maintain your level of riba and hgb?  

I've gotten second opinions from very experienced specialists that are all for transfusions, but my reg doc is very conservative and nervous about what he calls "research protocols."  The thing is, this specialist is a hepatologist who ran a study treating Hep C patients who have the complication of thalassemia, and their protocol was transfusions because the anemia was a definite complication to be expected.

It all seems like such a balancing game.  I think, though, the simple fact you've managed to stay on the full dosage of riba is going to help immensely.  I hope you're hanging in there okay.  Almost there.  I think we finish tx around the same time.  Yay!

[jmjm530]

In answer to whether you should bail out of trial and go private.

In general, private gives you more flexiblity and control which should theoretically translate into higher SVR. Exceptions might be when a potentially better drug is only available in trial. And then there're the financial considerations which may not be insignificant.

I was faced with the same choice when I started tx and decided to go private. Given my history, I never would have lasted any trial that didn't allow early and *flexible* Procrit intervention.

I also wouldn't feel guilty about leaving a trial. They never feel guilty signing us up even when they often know in advance some Arms will have less chance of SVR than others. It's part of the game.

-- Jim

[couldn't think of a nickname]

My wife lived in the bay area for a few months, but I am not one to travel, so unless plate tectonics moves SF a long ways.......

I did not know about anything you posted on TCM but I do find that very interesting. The eyes and CNS involvement is also interesting, and I think I have symptoms in both of those areas. I have always had allergy problems, and probably an overactive autoimmune system, so I figure I am more likely to see symptoms than some others, but that could be wrong, and is only a feeling.

The question is, are the above injuries you mention reversable? I would like to think so. There are many here (not all) who feel so much better after clearing, that that does give hope. My doc always said, that many people don't even really realize what symptoms they had until they are gone.

Re: muscle flexibility: My massage therapist was really surprised at how differently my muscles felt after 6 weeks on apple cider vinegar. I only take it once a day, but probably should take it more. My doc's wife takes it every day too, but he wanted me to stick to once per day.
While working on me, she would hit a trigger point, and remark how painful that spot must be. She had trouble believing me when I said I felt no pain, as that has been the norm for many years of her working on me. I finally told her "look at the rest of me, other parts of me aren't tensing up" therefore, no pain. It did make her work (and the releases) easier.
Maybe ACV is helpful to the muscles and could help recovery.

[jmjm530]

Yes, my NP suggested I reduce riba to 1000 mg/day starting at week #3. Fortunately, my medical team has let me make all my own treatment decisions for better or worse. It is my liver and that's how I wanted it. They are around for advice and to pick up the pieces if and when I screw up :) Rationally, I realize that now at week 35 I could probably drop to 1000 mg or even 800 and still be OK. But as you know I'm a big riba freak and want to hold the course as long as possible. It would be great if I could get to 42-weeks on full-dose riba but I'm taking it one CBC at a time. Actually, I'm basing it now more on how I can tolerate walking than the CBC's.

Regarding transfusions -- and I've done no research on this so just talking out of my hat -- so discounting any risks involved (blood supply, etc.) I think that would be a great idea. I hear you can get very quick relief. I think the problem would be finding a doctor willing to do a transfusion with my Hgb still in the 11's and before reducing my riba. I know my doctors would give me a funny look but I might just ask if push came to shove.

-- Jim

[Califia]

Very interesting about the ACV.....and funny how much merit these old folk remedies have, eh?

Dunno if you saw my post about post-tx wellbeing,  but yes, I am eternally optimistic about my own full recovery, as well as the general ability of the body to repair itself after serious assaults.   And holistic approaches certainly give us a leg up on it, so to speak.

[jmjm530]

If you'd like to elaborate on what the specialists said about tranfusions, I'd love to learn more. Did they say when they would intervene -- was it based on numbers or how you were functioning? Also, have these folks published or any  studies you've seen would be great. I pretty much resigned myself to reducing riba as the next step but who knows.

-- jim

[Wasabi Pea]

I admire your guts.  Despite all of the pamphlets I've received from my HMO telling me that they want me to be part of the decision-making process, I'm finding more often than not, when I bring up a study or a suggestion, I'm faced with an incredulous look of "The Patient does not speak."

Anyway, I've been making my best effort to be a pain in the butt.  I get CBC's weekly.  They're threatening to drop me down from 400 mg riba if I drop again, which judging from how I feel walking across the train station in the morning, it has.  However, I've got a qualitative PCR scheduled tomorrow, which is supposed to be more sensitive than my last one, which detected down to 650 copies.  That one was nondetectable, but that was taken before I had a month off of riba completely, so we'll see what this one says.

But anyway, hell, if you've managed to stay 1200 this long and can do so for a little while longer, I'm with you.  I wish I could be there with you.  As it is, I'm rolling up my sleeves ready for a fight as I want to go back up to 600 this month and eventually 800 to 1000.  I doubt they'll give me 1000, but I think I could get up to 800 if they're willing to do transfusions.  Never know.  There's a guy on another forum who has had at least two transfusions.  He was able to do it because his reg doc was on vacation and the fill-in doc was concerned over his sudden drop in hgb.  So although his reg doc is not thrilled with the notion, he's had another one to maintain him around 10 point something, I believe.  I think he's also on full dose of riba.

[jmjm530]

Thanks! I'll do a little digging so I can talk intelligently to my doc on this topic if it comes up. I def could use a little "young" blood right now. :) My only hesitation on transfusion would be the blood supply issue but hopefully they've got that down pat. -- or isn't that what they said twenty years ago when some of us got Hep C like that. :)

-- Jim

[crushed]

i have talalssemia beta minor and am interested in any other info. i've been telling DRs for years i may have it and none i can ever recall came to me and said "yes you do". after getting PO'd about the way things were being handled recently i gathered all my labs and there's no doubt. what irks me is that it was never really addressed when discussing treatment and knowing what i now do it should have been. being borderline anemic (plus iron issues) to begin with then being wacked with riba knocked me down to 9.4 even after starting epogen. i was dropping like 1 full point a week, i'm now back in the 11's but had to double the epogen to get there and having read how anemia can damage your body makes me even more ticked off the thalassemia wasn't addressed.

[couldn't think of a nickname]

Cal, I think we have a lot in common, except for the fact you have been through treatment, and hopefully, successfully. I hear you on the autoimmune issues. I have had allergies since birth, so that is always an issue.
You brought up something I should have, but didn't mention with respect to magnesium, vitamins, etc.
Travell and Simons talk about deficiencies in vitamins and minerals in depth, as they are key. Magnesium is one of the most important minerals for us, bar none. It is responsible for proper functioning of muscles. If spasms or trigger points come back to quickly, a mag. deficiency might be the culprit. My chiro has raised that issue with me as well. Even healthy people probably lack some vitamins and mins. but I think that those with HCV are probably even more so.
Also, there is a school of thought that calcium isn't the biggest need for healthy bones, but magnesium to balance it out. I have read that you can take all kinds of calcium, but it might not matter if you lacking potassium and magnesium.
I took some water soluble mag. for a while, called Natural Calm. It did cause some bloating though, but I believe it to be a good supplement.

[jmjm530]

Some doctors are more willing to work with you than others, as long as you don't come from bizaro land. Intially, I cited studies but this particular group has read them all so now I just tell them what I'd prefer, putting them in the position of talking me out of something, as opposed to me be in the position of talking them into something. That said, I thought I needed Neupogen a few weeks back but they didn't seem eager even though ANC was 420. I was one day short of probably doing it anyway when my ANC shot back up near 1000.

-- Jim

[2irish]

Thanks for all THE COMMENTS.  My weight is 135.  My hgb on sept. 29th was 13.8.  Then on oct. 27th was 9.8.  I was started out on 1000 of riba & reduced yesterday to 800.  My rx is at the pharmacy now, might take a day to fill it.  My doctor said when my hgb goes up they will boost my riba again.  He said that ass far as weight based dosage, I am about where i should be at 800, maybe just a little under.  But they will still raise it if my hgb rises.  Thank you, Jim, for your response.  I have been reading & know what a hard time you are having.  This anemia is the pits, you are so kind to take the time w/ so many issues of your own.  Goof...we seem to think the same way...I almost did the exact thing last night instead of reducing i almost kept it the same.  i am just afrais of getting kicked out of the study before i am ready.  They seem to think this will have no bearing on my clearing.  Wasabi, thanks to you, also.  I am sorry that you are dealing with this also...i always enjoy your posts because you are so well informed.  Glad you are back, Jim & Goof

[2irish]

thank you for the sites...i was up all night reading last night.  I was experiencing chest pains, shortness of breath & pounding in my ears.  My doctor said it was my body screaming that something was wrong.  I do feel a whimp that riba is reduced.  i do want to just continue taking reg dose...but just don't know...

[jmjm530]

There are two formula's floating around for geno 1's and riba. One I believe makes the cutoff around 165 pounds with over at 1200 riba and under at 1000. The other is more specific weight based and maybe someone here has it.

It's very possible that you meet the second weight-based criteria even though you've been reduced. Your doctors do seem on top of things as they've ordered Procrit and are willing to re-up your riba.

You could either leave things be or take a more agressive route and try and convince them to up your riba now. This is a very personal decision with potential consequences both good and bad. The fact that you're feeling a little better the day after the dose reduction may not have to do with the reduction, and how you feel is as important as the absolute numbers. Also, often doctors have some Procrit stashed around -- or at their hospital -- and if prodded enough will give it to you while your rx gets processed.
Decisions. Decisions. Ain't treatment fun :)

-- Jim

[NYgirl]

I am sorry to hear all of this.  God knows it seems to me the worst thing is this anemia - the sx and how the docs manage it altogether!

I started out in the 14s with my hgb and on 1,000Riba.  In ten days I dropped to 9 and they started me on procrit. Now they've upped me to 80,000 a week.

I had discussed with the doctor BEFORE I needed procrit that I would not tolerate having to drop my Riba. Now my doctor didn't really listen to me at the time but...thanks to GREAT advice in here I wrote everything down and presented my case to him with FACT and not emotion (thanks Jim) and so he did listen to me.

Why can't they act more aggressively with Procrit I dont know. My insurance company gave me some trouble at first. Now that I have to double up I am not sure WHAT they are going to do...but it's either put me in the hospital and transfuse the heck out of me at a huge expense or the procrit (which i heard for 10 vials is $6,000).  

Either way they are going to PAY.  Maybe someone needs to tell them that ... the hospital could cost quadruple that.

I wish you the BEST of luck with everything.  And I pray all our little anemic bodies back UP in the hgb!!!

[go-girl]

CONGRATS...........  so happy for you, stay healthy. I am type b as well, i start my first tx Monday, FINALLY

What is sublingual in B-12?
thanx

[Tonyz]

What is sub-lingual in B-12.


Sub-lingual,
meaning literally 'under the tongue' refers to a method of administering substances via the mouth in such a way that the substances are rapidly absorbed via the blood vessels under the tongue rather than via the digestive tract. The route of absorption via Under the tongue, allow the substances a more direct access to the blood circulation, thus providing a quicker and higher blood plasma level.


http://www.wonderlabs.com/itemleft.php?itemnum=3292&ad=goob12s


               Blessings

                TonyZ

[crushed]

i'm aware that much info gets reposted and don't believe there is any agenda on the site. my main reason for pointing it out is that it isn't limited. here people respond about other issues on a thread because you can't start new ones but every so often and it makes for cumbersome dialog. i do see a number of people here with a good bit of info and having a limited format seems to restrict the effectiveness that could be realized. the administrator understands the issues of hcv, i've spoken with her personally.

[go-girl]

hhhhmmmmm......... I learn something everyday, thanx