post tx interferon induce chronic fatigue & valycovoir

[wings]

Hi

Its been 3 years post treatment and SVR but remain relentless fatigue.  Since it did not happen until tx and has remain the same fatigue level, doc diagnosis is CFS from Interferon tx.  At least the Hep C is gone.  I have remained very limited in day to day activities.

We have been trying gammaglobulin shots weekly, now 5th week to bring up the immune system.  So far it is not working and caused another problem with the blood thickening possible blood clots.  I am going for another blood test wed to see if the Gamma Shots are the cause of the blood thickening.

She is also order vaycolvoir (sp) based on the standford studies, another antiviral.  Hoping to squash other virus HVP EBV that activated after Hep C tx.  She is telling me this is common after tx because the body is in such a fight it allows dormant virus to rear their ugly head.

I just am caution about another antiviral.  I appreciate if anyone else has attempted anything to get rid of the fatigue or tried Gamma shots or valycolvoir

sheila/wings

[MissyMouse]

Hey Sheila,

I haven't had the chance to go through recovery from treatment yet but just wanted ya to know Im rooting for ya!


Mouse

[wings]

Well thank-you missy and I see you are getting close to the end and I am remaining positive for you to slay this beast

sheila

[DougV]

Sheila,

Has it been three years already?  I'm so glad you did get SVR and I knew you would, but that there are still lingering after affects for you I hate to hear.  Has there been any improvement since tx was over or is it as bad as it was, or worse?  Just ain't right you've already been dealt enough.

Still I gotta say it is really nice to "see" you again.

Doug

[wings]

Hey Doug

Once tx ended I was excited and tried doing what I normally used to do and notice 1 year later I would still get the drain of fatigue hour by hour.  You know how that goes maybe it would take me two years instead of one.  So I am put into this pool of CFS from the Interferon or they say Hep C (I do not believe the hep C caused it)  It was this feeling from week two of tx.  Night and day..  It is a weakness like one comes out of surgery.

I not sure about this valcyvoir(sp).  One theory is my body is keeping the Hep C in check and reactivating the interferon so my body is completly exhausted.  I really hate that unknown dont need theory.

After Wed bloodwork we will see.  Before I take the valcyvoir I might tried this vitamin seems very simple but I might give it a month (has the NT Factor) or might look into chinese herbs.  I know you have to be careful with those.

shei;a

[DougV]

"One theory is my body is keeping the Hep C in check and reactivating the interferon so my body is completly exhausted."

I looked up the antiviral but other then its chemical workings couldn't find much about it.  But if your body is still fighting some residual hep virus wouldn't there be indications of this in your blood, for example elevated white counts?  I know this is stupid but I do assume you have had your thyroid checked?

I would be willing to bet you have already tried altering diet and maybe just my faulty memory but aren't you careful about your diet?  I ask 'cause if you are it seems unlikely a vitamin would help. 

I don't know anything at all about CFS and freely confess my ignorance in advance.....

Do they try prescribing low levels of stimulants, for example like some of the old prescription diet pills?  If so did that do anything?  What all do they look for?  I would assume diet, blood factors of all types, vitamin level tests, all of those more or less normal?  And of course this seems a perfect opportunity for nuclear meds so MRI, CAT, etc. too?

Hmmm, I relapsed and feel great, you got SVR and feel crappy.  Nothing personal Sheila but I think I'll take my deal instead of yours. 

Doug

[wings]

Doug
 
I am so glad you are feeling great, I do wonder a lot God I really should have left well enough alone.  But its done and move forward, you know should have would have could have doesnt work.  This CFS (chronic fatigue syndrome is a catch all) when they dont know what the bleep their doing.

Anywho the right spelling is valgaciclovir  (valcyte generic).  This is a theory,  they found in the blood the EBV and HVV6 virus became active.  (we all have this virus from the age of two) There was actual viral load increasing.   A common element is most people that have been through tx of hep c, hiv, aid and other chemo.  It is that combination that they said is the secondary virus that activate from a post viral tx, hence hep C.  I am not sure I am buying this theory.  Oh and the IGM antigen was low, this is the immune system.  So it makes sense low immune system virus activates hmmmm maybe they might have a point.

Blood work was good until she gave me the Gammastan shots.  Gamma are suppose to raise the IGM immune system.  So far all its doing is thicken the blood which causes blood clots.  Geeze she tells me this after I gave myself the fifth shot.  I have been drinking tons of water.

Went the route of ritilan, aderall (I dont think they have black beauties anymore LOL) but I was told I should have been painting the whole house, instead fast forward to the couch in a matter of 10 mins.  We did the thyroid, hormone saliva test.  Blood was IGA, IGG IGM standard CBC RA, even this thing called Borna Virus.  The psych also took off all head meds since I didnt need them any longer and rule out any depression.  I have felt fine mentally since I have been off the zoloft.

So if there is another blood test out there please please let me know because at this point I have to tell my doctors the studies and then they react.  Those other two virus that I have could have been there prior to tx and activie,  who knows.  The study was Standford Dr Montoya.


sheila

[beingbecky]

Hi Wings,

Sorry to hear about the CFS and or the auto immune problems. I have read up on chronic fatigued for the last ten years. I could not stay awake all day, I was tired all the time. Slept and never felt rested. This had been going on for a long time. I do not know exactly what brought it on, due to the fact I had been a drug abuser the prior 15 years before. So long story short, I get clean, do recovery, and am exhausted 24/7. I very well could have jacked myself up while using and drinking and contrating hep c. I have had different diagnoises as what the problem could be. I did not get any specific blood tests done, except for a thyroid test. My thyroid is under active so I take meds for that. I am diagnoised with acute depression called bipolar II. Which is high depressive states with an osscasional mania episode. I have not seen any mania episodes for a long time, so I don't know really what I have. I am tired easliy I and have very little energy. I spend my energy up in a couple hours then I need to sleep. It has been a difficult journey being tired constantly. The only thing I have ever been perscribed that has helped a little is Wellbutrin. It keeps me awake longer than anything I have ever tried in the past. I think for the most part I have done better these last three years, at least I can get through some days without sleeping, which I was wondering if it that would ever be possible. Also, I think getting a svr has done the oppisite for me, I feel less tired now. Not to say I feel like I have gotten rid of it. I just don't function with a high stamina. Well, I am just reaching out sharing some of my experiences with CF, just letting you know I can relate to how it feels to have no energy and feeling exhausted followed by the NEED to sleep, it's crazy. I hope you find some answers. Also I have picked up a book called Nutrition Almanac by Kirschmann, published by Mc Graw and Hill that is an excellent resource to food groups and supplements that may help. I do try to eat right and do walk to try and increase my energy naturally, it does help when I am consistant with it.

Becky

[wings]

Becky

You went down a very hard road and came up strong except for the CFS.  You hit it right, rest more rest and still no stamina.  Simple things like taking a shower and eating breakfeast can all be too much.  The friends I have that have been clean for years are fine today and did the tx.  They look at me (and I never used got mine through skin graft and blood transfusion) and say "oh you are one of those horror stories that you read about after tx, such good friends :-).  Thanks for your thoughts.  Meds I used for depression

wellbrutrin, on it for four years and zanax at night, once treatment started the doc added zoloft.  That combination was wonderful.  The only thing I hated was I couldnt get emotional.  At the end of the fourth year we started switching and in three months my body went into major anexity attacks.  We stopped the meds and took the wait and see.   Doc said sometimes the meds can stop working and need to switch, NOT A Good idea.   I was down because I wasnt getting better but no more real funk.  My body reject all the meds after that.   So I have been off the meds now for about 9 months.  I believe it corrected whatever was wrong with the serotonin levels.  Doc said its possible but if I need them the body will know.  I tried going back on them but I just get too shaky, so for now, nothing.

Cant say the blood test are the ticket but the test on me were EBV (epstein barr) HVV6 (herpes virus #6) not the cold sore or genital virus.  The study drug is valcyte (valcvr) Oh and always get the Hep C every 6 months as a just in case. 

Like I said I tried the gammastan but so far not working, but for some people it does work.  It might not help me but maybe yourself or others.

sheila

[kentucky]

hi wings.

i have had the same problem with the exhuastion after tx.
some days are better than others. and sometimes i just have to leave things until the next day.
as i maybe totally useless on a day.
let us know what works for you. i'd like to know.
even caffeine doesnt help me on some days.

i have some questions: 1) what stage is your liver in  2) do you have problems sleeping  3) are you close to or near menopause.
4) what vitamins do you take and have you found any to work better than other.s

[wings]

Hi

I am at stage one grade 1 2a geno.  So I was interferon 6months and cleared.  They said 6mon-1year to start feeling better.  I felt great once I came off the meds (had an awful time) but never got energy back.  Just kept going forward and felt keep pushing it would let up.  Would go until the legs felt like cement and then on the couch for two weeks.  I would move just to keep blood going.  Knew it wasnt normal

I have been on these gamagloublin for 6 weeks now and so far, not doing anything except for some cloting problems (too much).  So more tests for that.  I also started the Valcyte which is stronger valtrex.  Been on that for two weeks nothing yet.  This med is antiviral so need bloodwork done monthly since it effects the liver.  We have tried stimulants, predisone, b12 shots, all the vitamins which I still take.  went off all antidepressant for about a year now.  Started to go through premenopause during tx and back to normal.  Blood was great.  But Doc also said the hormornes never really show on testing since the range is way to wide.  It might be normal for me and abornomal for you.  So you go by how and what is going on with your body.

I have to go for more bloodwork to see where the gama is at (suppose to raise IGM immune system) I will give the valcyte alittle longer.  They recommend 6 months but I would like to see some improvement. Last test the IGM wasnt doing anything

The key from what I am told by the CFS spec is to know the limits to sustain a daily routine.  Talking with some people with CFS from chemo in general are left with fatigue.  One women went through it the first time sucessfully and the second time she had left on permanent disability just couldnt bounce back.  I left work thinking it would help to really rest.  No I became Rip Van Winkle :-) rest dont really sleep during the day.   I sleep with a zanax at night.  I was always an insomniac.  At least I do sleep the eight hours with one zanax .5

The hardest part has been going through the test to rule out heart, blood, hormones etc.  Then trying a drug and waiting to see if it helps.  Even did physical therapy for a month every morning and got stonger but the fatigue was worse than ever.  Hoping the whole time your own body kicks in.  So, I wait for the good day now.  I take advantage and do something (those are about twice a month), but cannot overdue which is hard for most people.  Its trying to find your limits and there is no measuring against anything substainsal.  IE if you were used to doing five errands in one day it is down to one.  It takes forever to complete anything.  Everything is broke down into pieces.  No more getting anything done in a day. 

wings

[negative1]

Since it did not happen until tx and has remain the same fatigue level, doc diagnosis is CFS from Interferon tx. 

I think that the CFS diagnosis translates in hep tx language to....

" I really don't know so I Can't f*****G say!"

?

 Earl

[wings]

Earl

I hate say but I am really thinking YEP its the dam Hep C even though I am clear. 

Got the new blood work that was showing blood was over clotting.   Tx would be blood thinner so I took this  hesperian (called nattosyn OTC) will clear the blood naturally like cummudin (sp).  I started taking it again about 2 weeks ago, and perfect clotting?   

The valcyte is not doing much except I noticed NO migranes.  That is something since I got them after tx and these never stopped.  These migranes did once I started the valcyte.  The Gamma shots I have continue but dont see the IGM going up, so these shots have not helped at all.  Doc said finish it out.

I think it is too soon to tell but I notice I not on the couch as much.  This just could be the waxing and wanning. Or I am just learning to adjust my habits of not overdo

sheila

[wings]

and ditto on what you said they dont know,

[Hank's mom]

Wings -

I've never cleared and so can't speak from personal experience - non-responder here. My bigger of the 2 problems is my liver over the hcv, and the fatigue you have sure sounds like some residual hep stuff. My load was never terribly high - 3 mil tops - but the liver is basically keeping that side of my blouse from caving in. I do wonder about the prednisone w/liver problems. I've heard some bad stuff. Plus, and you may have said this but my brain ain't what she used to be - is there some professional helping you oversee this pharmacy you have going on?

I say this only because I know I don't know all the fact from fiction and often looking things up on the internet only adds to my confusion. I certainly check w/my docs, especially about vitamins and supplements, but my best friend in the world of meds is my pharmacist. I am fortunate in that I have been going to the same pharmacy for over 20 years. Though some staff has changed, there has always been at least one person who has known me and my profile. Naturally, I take up ample space in their computer. They have caught things more than once about me, my hubby and kids over the years, which actually saved my life. One ER doc ordered a new variation of penicillin for me - I am deathly allergic. 

Again, if I'm not on target here, just chuck the whole thing. I just know that I too would find it troubling and aggravating to still be having these harsh lingering effects. Best of luck to you,

Susie