sides

[audreywald]

Has anyone NOT experienced the usual sides of hair loss, rashes, headaches, bodyaches, sleeplessness, mood changes ...

I would like to hear from a lot of people on this, we probably represent a good number of people from all over. The stat's say only 20 something percent have hair loss, but EVERYONE I have spoken with who has been on tx for any length of time has had some hair thinning. Same with headaches, sleeplessness etc

inquiring minds want to know!

[n2cats15]

Oooh it is so easy for me to blame everything on treatment!  My itchy watery eyes are much better.  I saw my PCP who thinks it was environmental allergies!  With Zyrtec and new eye drops I am a new woman!

[n2cats15]

Help!!!  I am week 5/48 of the pegysus copegus regime.  I really need some suggestions on what to do for the allergy type symptoms.  I am having itchy, watery eyes.  Itchy, runny nose.  I have tried claritan, flonase, opticon A eye drops and chlortrimetron over the counter allergy meds.  They work for an hour or so but then I want to scratch my eyeballs out of my head!  

Has anyone had this side effect?  If you have any suggestions please e-mail me at ***@****.  Thanx!

[Fubarcat]

Hi.  This is my first posting to this site.  I just happened to stumble upon it and spent an hour at work (ooops!) reading a few of the comments.  Anyway, I have had three weeks of shots/riba treatment and recently have suffered sudden and severe "sweats" in the morning to the point of feeling like I am going to pass out.  Also, at each injection site, I have red welts.  The raised welt goes away within a day or two, but the redness from even the first shot is still there.  Anybody know anything about either of these symptoms and what to do?  I am happy that so far my side effects (body aches, fatigue, hair loss) have been manageable and I'm just praying it doesn't get any worse than now.  I LOVE this site.  Thanks.

[dutchie]

Please forgive my bad spelling sometimes, because I'm not a native speaker :-)

[dutchie]

I've not had ANY hairloss, so no probs there. My bad sides where nausea with daily vomatting no eppetite so I lost a lot of weight. Further more the moodswings and tiredness, sometimes going up the stairs made me exhausted. I've had some periods of rash all over my body, sometimes on my back, then on my legs, etc. And headaches. How could I forget ;-).
At first I was realy sick from the injections (3 x wk), but later on in the treatment I got some kind of boost from them for a few hours. I of course than started to take them in the morning! :-)

My next round will be with the Pegasys (I'm a relapser), so I don't know if the sides will be very different. I personally think that the ribavirine made me so nauseous, so that won't be any different.

[tina b]

Hi tri-guy, My husband said he knows where that is and had been there but only briefly, he was stationed in Meintz (SP). He has a buddy that he met after he got out that had hep b when he was in Germany about the same time, he thiks the guy was stationed south of there. The buddy has Hep C now. He found out in 1993 that he has it. (My husband found out in 2001) His buddy has chose not to treat it yet, still waiting for a magic cure I think. He has elevated enzymes all the time. I don't know his geno type- he has also chosen not to learn that yet as well. He quit drinking when he found out and seems to be doing okay, he does have some liver pain. He did have here about 5-6 years ago a blood clot hit his lung and scared everyone to death, his doc told him he didn't think it was related to the hep c, he fully recovered from it I guess. He is about the same age as my husband 47 years. Good luck to all!

[jonihs]

So far, I'm one of the licky ones,but I'm waiting for the other shoe to drop.I'm8/24 and the only sides I've had so far are mild nusea,fatigue, a  few headachs(bad ones) and I'm starting to get brainfog. I had a fender bender the other week. But no fevers, chills and just starting to get overall body aches. Worse all the time, but I have an appt.w/ my G.I.PA.tomorrow. Also I see my Internist once a week, so if I need meds, Hopefully! So far my WBC and RBC are fine. Platelettes   are a little low but was just told to watch for bruising or bleedind.So all and all, I've had it good so far. Hope the same for many others.      joni

P.S. Also my docs immediately fax any lab work or opinios to each other!

[jonihs]

So far, I'm one of the licky ones,but I'm waiting for the other shoe to drop.I'm8/24 and the only sides I've had so far are mild nusea,fatigue, a  few headachs(bad ones) and I'm starting to get brainfog. I had a fender bender the other week. But no fevers, chills and just starting to get overall body aches. Worse all the time, but I have an appt.w/ my G.I.PA.tomorrow. Also I see my Internist once a week, so if I need meds, Hopefully! So far my WBC and RBC are fine. Platelettes   are a little low but was just told to watch for bruising or bleedind.So all and all, I've had it good so far. Hope the same for many others.      joni

P.S. Also my docs immediately fax any lab work or opinios to each other!

[GALLIUM]

HI TINA I'M A VETRAN AND AM PRETY SURE I GOT MINE IN MAY OF 72,
WAS EVACED FROM NAM TO STATES WITH SURGERY'S IN NAM AND AGAIN IN JAPAN WAS GIVEN BLOOD SEVERAL TIMES. (AM GENO 4 WHICH IS MOSTLY FOUND IN EGYPT).
THERE ARE A FEW WEB SITES FOR HEPC VETRANS, AND THE VETRANS ADMIN. HAS A PUSH ON TO IDENTIFY HEPC VETRANS.
WHILE I WILL NOT EVER LET A GOVERNMENT AGENCY NEAR ME AGAIN
(PERSONAL REASONS, NOT LEGAL. HE HE ) YOUR HUSBAND MIGHT THINK ABOUT LOOKING INTO THE V.A. FOR HIS TREATMENT AND POSSIBLY COMPENSATION.

[tina b]

tri-guy
My husband was also in Germany about 1979 or 1980. The study the Dr quoted was from the very 1st one done on peg-intron vs pegasys to see which one was the best. He says while they had very close (within 1%) success rates that the pegasys had the study slanted in its favor ie. better geno types, less over weight people, better labs going in and stuff like that. He maintains that if you really  look at it close that the peg-intron is 7% better. As for having the VA treat him that would be OUT OF THE QUESTION. We have a couple of VA hospitals within an hour of us. I don't allow my dad (Korean Vet) to use them either. I thow a big fit! I will keep my thoughts on the VA to myself but thank God my husband has wonderful insurance. The first round of rx cost about $70.00 per month total. As of Jan 1 2004 his perscription ins. changed and I thought OH BOY! Here we go, but it turns out that this round is only going to cost about $40.00 per month total. $20.00 per sript. WHEW!

Hi gallium
Are you on meds? Are you getting any response to the meds? Thank GOD he won't have to go through the VA for his TX. I had heard that the VA was doing a study into Hep C and vets and they stopped it cold after abut 2 years, probably because of what they found if you know what I mean. That would be a lot of $ to cover the cost of what I think they did. I did stumble onto a geat site the other day http://hcvets.com I hadn't seen before. They are actually doing there own study on Hep C and vets to see if they can find clusters of vets from the same era or places with a higher incidence of Hep C. According to there web site ( I know you can't believe everything you see on the web) 75% of the people with hep c are vets and 63% of those are Nam vets. My husband fall into the post Nam era 18%. I don't think the VA is compensating anyone for hep C yet but I did read somewhere that (1) one guy has won a case in court against them on the hep C. It may be on the hcvets site.

[Tri-guy]

There were several of us in our unit that ended up in the hospital from this at the time.  Can't remember for sure if they diagonised it as non A/B or as B.  My blood test however have shown I've never been exposed to either hep A or B.  Know it's a long shot but any chance your husband was stationed in a ADA unit in Fulda, Germany.

[Tri-guy]

Tina, I

[tina b]

tri-guy, thanks for the info. Are you getting any VL drop with the Pegasys? We did ask for the Pegasys based on what we read here and the doc said Peg-Intron is 7% better, ( he made us a little chart based on the study between the two) so my husband firgured that since he relapsed, he needed all the odds in his favor he could get. Are you having any of the depression sides with Pegasys? To me, that is the absolute worst side of them all. It made him meaner than hell at times, not physically but he sure could spew a string of cruel verbal garbage at times. To him, feeling crappy all the time was the worst I think. He feel great right now and doesn't want to feel bad again. He starts shots again on Jan 30 and we go back to the Dr again March 30, if he gets bad, I may ask again for the Pegasys. Last time on Peg-Intron, he cleared at 12 weeks (started with VL 2.5 mill first time and dropped to undectabel in first 12 weeks), became detected again at 6 months with VL of 254,000 and about 45 days later was tested again and VL was 450,000. He has had it for about 25 years, the only thing he can firgure out is he got it in the army, I wonder how many on here are vets? I read somewhere that 75% of hep C patients are vets. He is 47 years young and was in service from 77-80 or 81. We have been married 20 years this June. Good luck to you and all on this board, it has provided much information for me and him.

[fatboy]

I'm glad you are doing so well! A decline in the number of migraines must be a blessing!

Currently I deserve the old "fatboy" handle more than ever, but that aside, the family and I are reasonably happy and well.

-Fatboy (MichaelT)

[britgirl]

Hi Fatboy (sorry about that, but that's how i got to know you many moons ago!)_
I am very, very well, enjoying life just as I did before the "Hepatitis-dominated" period of my life. I eat healthily and drink more water than I used to, but I can enjoy my glass or two of wine with dinner again and i generally feel I have rejoined the world of the living! I have fewer migraines than I did before  getting rid of the virus, that is a plus, a bit less pain in my joints, but basically I feel the same as I ever did - which was great! The Hep never got to me like it does to some people, despite the fibrosis. I hope you are well and happy and enjoying life too!

[Revenire]

I'm going on week 55, 40 at full peg/riba, then half dose of peg to try to reduce the fibrosis. How long will I do this for? I see my doc Feb. 9 and we will talk about it but at least for 6 months.

[Raynman]

Hi,
Had 1st shot Friday 1/16 and No side effects...none. I heard that the first of the shot would be the worst. But a recent post shows otherwise. I need to heal, so no matter what I am taking these meds. Come what may. We'll see as time goes along.
But I am still working two jobs, and going strong. I have dozens and dozens of people praying for me. Praise the Lord I give credit where credit is due.

[Revenire]

I meant "50" at full dose medications, not 40. I was clear all the way through but I am also stage 3 so I want to try to reverse fibrosis and have a SVR.

[Tri-guy]

Last year I did the Peg-intron and Rebetol comb and had the usual chills, aches etc on the first shot.  I had to stop because of a intestinal infection.  I started tx again this Sept with Pegasys and had absolutely no sx from the first shot.  I

[tina b]

Hi everyone. I have a question about the sides of the tx. Can any of you oldies tell me if the 1st shot sides are as severe the second time around as the initial sides from the very first time on tx 24 weeks? 1st time on tx 1st shot was typical (chills, nausea, fever, etc.)Husband is Geno 3a relapse (Doc didn't get iron down before 1st treatment probably caused relapse) VL 454,000. Just want to know if he should expect more of the same or if will be a little milder (I hope) this time. Doing Peg-intron and Rebetol again-his NEW Doc refuses Pegasys, says Peg-Intron is better.

[Ambush]

Congratulations on getting started!  I have had pretty mild sides on tx (35/48).  A little bit of everything, but nothing intense.  Some of us get lucky ~ hope you do, too.
ambush :)

[cindee]

Audrey, HI! I wasn't in the NOT category!!!!! Lots of sides and all the ones you mentioned. I am happy for the ones on tx. that don't have many sides!!!!! Wish I had been one! We love ya! Cindee

Marichandra, Hello. My uncle has cancer, but is doing great. He told me to eat w, plastic utensils...it helped sooooooo much. Best Wishes, we're w/ ya here! Much love, Cindee

Petey7, Just anote to let ya know my shrink gave me a sample for the rage..I think it was Zyprexa...I didn't even use the whole sample bottle. My husband helped me to control the rage by remending me all the time...IT'S THE MEDS. Hope you do alright, but I'd check out the rage/mood meds. Prayers to you and all my Hep C family. I truely love each and all. Cindee

[MajNeni]

Hello, long time since I heard from you.  Those late 30's and early 40's were very slow slogging; very mental.  The last 4 weeks slipped right by.  You'll get there soon; not as slow as the early weeks.  I'm certainly glad if I helped you; people on this list helped me a lot to get through.  
I have 2 1/2 more days of riba... could quit now, but I'd feel guilty.  Friday night I have a Quaker meeting at my house; but Saturday, I'll start goofing off.  I'll need it after the first week back teaching.  Is it all the new demands, or the concrete floors?  Don't know, but it's pretty tiring.
Maj Neni

[DownThisRoad]

Seemed as though I wasn't having too many ill side effects from the medicines as well as not having any hair loss.  Thought I was going to be able to bypass both effects of the treatment meds.

Well, my sides came gradually after about week 10 and come and go. Not all at once, but definately never a day goes by that I don't hurt with joint aches, memory loss and somedays just feel plain crappy.  Right when I have a couple of good days where I feel well, along comes a day that I just can't shake off these ill feelings.

At week 7 I had to start taking Procrit because of very low and rapid decreasing rbc.  I still have to inject Procrit once weekly and suffer some from anemia.  I'm so tired and have such a loss of energy. I tired easily, as where before starting the treatment, I had energy to burn.

My hair loss started about week 20 and I've lost tons of hair since then.  I still have days where I feel really badly but get up and try and make the best of it all.  My hair is still falling out at 37 weeks of treatment.  I'm just working really hard to get to the finish line.  That is all I can think about.....just getting to that finish line!!