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29837 tn?1414534648

Update on Infergen torture

Hello friends

Nine weeks have gone by since stopping the Infergen torture. I only say that because as most of you know, I was on a mega dose of 24mcg daily shots and 1200mg Ribavirin for three months, until the doctor pulled the plug before I died from liver failure. That said, I will most likely try again in the future, but only with the "recommended" dose. No more bravado.

Here's what's happening to me now:

- My hair is still coming out. May be it's the bad hair from the treatment that is growing out
- Still have Reflux and take one pill per day of Aciphex
- My mind is clearing up more and more. Brain fog is not as foggy
- Some itching, but controllable
- Sunken look in my face still, but color is returning
- Energy level about 80%, up from 5% during the torture
- Joint pains not as severe as when under torture
- Eyes not bulging out anymore. Kids don't run away from me now
- Shaking when angry is minimal at best
- Anger and wanting to kill people and neighbor's barking dog has subsided
- Sex drive has returned. YES!

So my friends, in conclusion, I'm still here to tell the tale. If you don't know my history, you are doomed to repeat it. Be very very very careful with taking too much Infergen. Just stick to the normal? dosage, and don't be a hero. There are more dead heros than live ones. Aside from that, let me say again, I reacted to Infergen better than the past four treatments with Interferon and Pegasys. Can I equate that fact to mega dose? I'm not about to experiment again.

I pray for everyone to clear ASAP. There will be a cure....

Magnum
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Avatar universal
the torture you describe is what i felt on NORMAL dose of the poison.  i only lived for the end result. fortunately i cleared.  it was the hardest thing ive ever done.    3 years later i still feel like i am on interferon at times with brain fog that comes and goes.   that was potent stuff.  yet im grateful.
Helpful - 0
Avatar universal
acid reflux (from swallowing riba chemical)  is under control the best its been- just lately.  eyes still very dry.  sleep disorder  still a problem.  anxiety better.   and this is 3 years later.
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86075 tn?1238115091
you know, you've kind of helped me with a panic attack I had tonight...the first one in over a year...you got me in perspective, people can go through far, far worse then a lousy panic attack and still come through it...I guess when youre in one you lose all perspective of anything really...so your post really helped me...thank you....and I'm very glad that youre feeling better, all things considered...
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Avatar universal
Man, Your name fits you so well. I think of you often and had wondered where you've been.  Your a brave soul to go through what you have.  It's good news to hear your slowly getting better, but you are gettinh better.  Hang in there my friend, your on your way to recovery.
As you may know, I have 1 week left of treatment, have had 2 transfusions, etc.  I had to go to NY to treat as no dr in Fl would treat me because of my Thalassemia.
Thanks for checking in and please keep us posted as to your on going recovery, your in my prayers.

Beagle
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Avatar universal
I am glad to see that you are sparing the dog ...and that you are feeling better.
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Avatar universal
Glad you are recovering.  You mentioned the reflux, it is particularly troubling to me after finishing tx because I had it really bad before I started.  Having it come back so forcefully now makes me thing something is wrong or virus is back.  I have all those wierd symptoms, tongue sore, congestion, stomach pain, mucus in stool, sore throat.  This reflux may be the most annoying condition ever.  Has yours been getting better?  Do you think we are doomed with this forever?  

Just want to say congrats on the return of the old wanderer (know what I mean! nudge nudge) - see the "blueeyes" post a few days ago for some tips from WMich and myself on the proper use of Marvin Gaye during this most important re-entry phase (thats "re" not "rear" - an important distinction to remember)*

*Note to those easily offended by such innuendo, please post your complaints to our resident censor "candoman" whose prompt reply complete with innuendo will help you assimilate more easily into the internet experience.
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Avatar universal
Magnum,

Glad you're feeling a little better. It does take time.

-------------------------

I still have reflux but it's been getting better since about a month post treatment. If your symptons are from the neck up -- sore throat, hoarseness, earaches, sinus problems, etc, -- then you may have LPR (Laryngopharyngeal Reflux) which may or may not present itself with heartburn.

While one PPI a day (like Aciphex or Nexium) is usually sufficient for ordinary chronic reflux (GERD), two pills a day (one every 12 hours) is usually required to heal the damage of LPR since the tissues involved are more fragile. Best person to check out LPR is an ENT specialist -- not a  gastro -- who can examine your throat and vocal chords.

Other things to try are H-2 inhibitors like Pepsid AC or Pepsid Complete, especially for nightime reflux. Be aware that Pepsid Complete contains an antacid, so probably best not to take on treatment within a couple of hours of a meal.

You might also ask your doctor about Zegerid, which is an instant acting PPI with the same active ingredient as Nexium. Again, Zegerid contains an antacid, so use only a couple of hours away from meals. Currently, I no longer take something every day, but when needed take a Zegerid, Pepcid AC, Tums, or even Gaviscon. BTW, Gaviscon is another no-no to take if you're on treatment unless you really space it away from the riba.

-- Jim
Helpful - 0
Avatar universal
Interesting that you mention congestion, throat problems, reflux, hoarseness, mucous, gastric problems, etc.  I had all these things before my two tx'es, but do not have them to nearly the same degree after becoming SVR.  I never hear about these sx being related to having active HCV infection, but I would bet a pile of money that my sx, from over more than two decades, were from the HCV.  I had sinus congestion that was year round, along with thich mucous in the throat that led to constant throat clearing...almost daily...throughout all seasons.  My intestinal system was usually a mess (I think ChevyGal suffered the same before SVR), and I had frequent unexplained sore throats, that did not check out to be strep, or anything else that you could test for.

My point is that I believe HCV often provokes a host of sx in people over the years which the doctors have not really connected to the HCV.  They tend to feel that any symptom is caused by something unrelated, and has no relationship at all to HCV...but funny how these sx seem to clear for the most part, after successful tx and SVR.

Lakaluster:  I also have many days where I feel like I am still on interferon.  I am SVR, and closing in on three years SVR(justed tested undetected last week again with two highly sensitive PCR's), and have days where I feel like new again, and then have days where my joints ache, I have no energy, the brainfog is overpowering, I feel depressed and lethargic, etc.  I guess its just part of the interferon hangover...which may or may not ever go away.  Or worst case scenario, is the fear that the ongoing disturbances could be related to the 'persistent HCV after SVR' phenomenon that researchers have been describing, and debating for the past few years.  Maybe a low level, lingering residual infection could keep our immune systems over-reacting, on  and off, and creating an autoimmune-like state of being.

Just a few thoughts and comments.

DoubleDose
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Avatar universal
Despite the long and impressive list of symptoms I glean from your post that you're feeling significantly better and if I am correct in that assumption I am thrilled that things appear to be settling down for you.... and those unfortunate people at risk too. You certainly did go through the ringer this last go around and that's not even considering your previous ordeals. I wish you continued improvement. Good luck. Mike
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Avatar universal
ral
I am very glad you are coming around Mag. We just need to keep the faith
ral
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137025 tn?1217764741
Well, I've got eight days left til my 200 mile trip to the clinic, where I am almost positive I will hear the "Infergen" words.  It helps to read a truthful post about a bit of what I might expect, although I experienced your same sx on plain ole Pegasys, so you can imagine my shaky commitment to something stronger.  At least I have the clarity of knowing I can say with some authority that...."I'll have the Infergen Grande rather than the Venti, please."  Thank you for your post, it was very specific to my own situation today.  You be strong person, may I be as strong when my eight days are up!  Thanks and my admiration to you.
Willow
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Avatar universal
GOOD LORD man you are KILLING me today!

Where is the Can-do-man???? Beginning to get a little worried about him. That last comment surely will bring him out to play...
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Avatar universal
All the symptons described -- frequent sore throats, throat clearing, hoarseness, gastric discomfort, sinus issues, etc, -- can be related to reflux, LPR, even allergies and viral infections.  Lots of people who never had Hep C suffer from these symptons which are also intermittent and could possibly decrease with age -- so it's hard to speculate with any accuracy if clearing the virus is the reason you no longer have them.

However, I certainly hope you're right. As you know, I did have some reflux prior to treatment -- had LOTS of reflux/gastric problems during treatment -- and still have some problems 12 weeks post treatment. On the other hand, my brother who never had Hep C, as well as my mother (also no Hep C) also suffer from LPR to one degree or another.

I also have this little pet theory that the body can only deal with so much at once, with the exception of combo treatment, of course. LOL. What I mean is that often it appears one sympton (sinusitis) will flare after another sympton (skin problem) subsides a little. Forgive my oriental/alternative way of describing it, but it may be that many of our diseases/symptons come from the same source but just manifest itself in different ways as it moves through the body. Om :)

So, possibly your gastro problems have now been replaced with some of the immune-suppressive problems you've described recently. Two sides of the same sick coin? In my case, my gastro/reflux problems have gotten better post treatment, but my skin is flaring up again. Hope this makes some sense and not just mindless angst chatter as I wait for my blood results.

-- Jim

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Avatar universal
magnum-thks for the update&cautionary tale...i am happy for :your neighbors,dogs and Mr Johnson-Good News All!
Helpful - 0
29837 tn?1414534648
You said "This reflux may be the most annoying condition ever. Has yours been getting better? Do you think we are doomed with this forever?"

An excellent question. It is getting better. I tried staying off the Aciphex for a couple of days and it was worse. I'm sure I'll get back to normal. I'm prolonging the agony of waiting to return to normal because in spite of what the doctor said, I eat whatever I want, and love spicy food.

As I've read from other posts, if you don't clear after treatment, the chances are greatly reduced that you will develop Cirrhosis. Let's hope that's true. Then, the Reflux agony will have been worth it. My concearn is with my vocal cords, since I'm a professional singer.

I will say that under treatment, I pushed food away, and all my favorite foods were displeasing to me. Now, they taste great again, but I dtill have a mental aversion to greasy foods (which I rarely eat anyway). Let's say that a cheeseburger now tastes great, but under treatment, I would have reached for a vomit bag. Hang in there my co-Refluxers, I'm sure with time and medicine, it will go away...

Magnum
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Avatar universal
Mag: I tried staying off the Aciphex for a couple of days and it was worse.
----------------
It's not uncommon to have a few rough days (or more) after stopping a PPI like Aciphex. Some call it the "rebound" effect. To really find out if you still need it, either stay tough through the rebound period, or better still compensate by eating smaller, more frequent meals with less reflux triggers. I also found that popping some antacids (Tums) helped a lot for the first couple of weeks after coming off my PPI.

I know what you mean about loving good food, but if you make your living singing, you may have to make some sacrifices -- at least temporarily -- in order to get this thing linked. Maybe the theory behind PPI therapy will help.

The idea is to reduce your reflux with these drugs so that your esophageal and/or throat/larygx tissues will heal. Once the tissues  heal they will then be less sensitive to the reflux, and keep in mind that everyone refluxes to one degree or another, just not everyone has the side effects. In other words, if you're like most reflux/LPR sufferes, this has probably been going on for many, many years, but it's just recently that you're feeling the effects because now your tissues are raw. That's why it's also important to see an ENT who can stick this very small lighted probe either into your nose or mouth to examine and plot the progress of your vocal chords.

-- Jim
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Avatar universal
To answer your concern, reflux can and does often go away if treated properly -- although it may return again. On treatment, it just seems to get worse and worse because your body just doesn't seem strong enough to repair the damage the reflux causes.
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Avatar universal
Magnum, I am glad you are starting to recover from the treatment from He**.  It really sounds like you are on your way to a heppers version of normal!

Return To Sender:  LOL, every time I see your screen name, ELVIS sings that song in my head!  Errgggg - make it stop!
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Avatar universal
SJL
I applaud you for the incredible dose of Infergen you were on. I can't even begin to conceive how you even funtioned? I did 9 mcg. daily & I, for the most part do not have any memory-or at least only remember the agony, as you say. This was my 2nd. attempt, followed up by Pegasys maintainence. Is anyone else been advised to go on maintainence?

Are you on any anti-depressants? They still have me on Neurotin & Effexor, 3 x per day, 100 mg. I am trying to get off of the Effexor-& I am beginning to wonder if this is the right thing?

I had all the imagineable sides of Infergen, plus some, I'm sure. I have been left with Neuropathy of feet & legs & right hand. I am trying P/T, 3 x wk., and it is wearing me out. Maybe I should reconsider the Effexor? Any suggestions-please! For the most part I still have the dryness going on, mouth, eyes & skin. Still coughing up alot of mucous & wondering where it all comes from. Do you have any suggestion for the dry, dry eyes? Still very tired and insomnia is still kicking my b--. I never can even begin to think about bed until about 2 a.m. I appear to have a little more energy in the evening and that is when I get things done. Always up by 8:30 a.m.


Hang in there Magnum, their will come a day, when we will both clear, along with many others & it is for sure that we will have a better understanding of our bodies. I am waiting for that day! Sandy
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29837 tn?1414534648
Through 5 treatment attempts, I was very fortunate to never have needed anti-depressants, although my doctor suggested them. One of the solutions to avoid anger, is to walk away from those situations. Bite your tongue, swallow your pride, and you won't go to jail. I say that because during a couple of my treatments, as well as the last torturous one, I did feel like killing a few people with my bare hands. I gritted my teeth so hard from anger, I thought I would break a couple of them.

I think the most important thing is to stay occupied, not matter what diversion you use, and always know that this could save your life. You'd be amazed what the power of the mind and suggestion can do. It kept me out of jail and kept me going in spite of the fact I was slowly dying from treatment. If the doctor would have let me continue, I would not be writing this note.

Not trying to scare anyone, but if having been a Guinea pig for the rest of you helped someone, then I feel I did something important. Something no one did for me. However, I
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