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Avatar universal

sides

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!
32 Responses
Avatar universal
I had some of these side effects but by all means not all. I had no sleeplessness (I sleot more!), no fever, no chills after the first shot . no loss of appetite, no depression (I didn't take ADS), no brain fog and did not have to miss any work at all over the 6 months. I was on Pegasys, which most people believe is more easily tolerated so maybe that is why. My only problems were skin, hair, mouth,thyroid and ear.
Avatar universal
I am in week 37 out of at least 48 - first time on tx, using pegasys & copeg.
As for the sides issue and I am sure that no two people are the same:  For the first 4 months I had virtually NO effects.  I almost thought I might be injecting H2O.  The honeymoon ended in the 5th monthe with nearly nightly chills, low grade fevers, and body aches. Since month 5, I have had sore throats, dry coughs and rashes that come and go. Dry mouth is ongoing in spite of 2 gallons of liquids imbibed.  One side that come early and hangs on is having all food taste wrong - I have lost weight that I didn't need to lose because of this.  Eating spaghtti is like eating tastless yarn, many food taste sour or bitter when they should not.  My husband is being recruited daily to 'taste this and see if it is ok to you.'
My energy level is very low (HGB - 9.9, RBC - 2.9) and I am short of breath frequently.  Neupogin keeps my WBC within range.
I am sleeping OK, thinning hair is not notacable by anyone but me. I do not have enough energy to get depressed.
I was in excellent health prior to treatment and truly did not expect to experience any side effects.
Good luck to you on your journey.
marichandra
Avatar universal
I've experienced some of the sides but not all, and thank goodness not all at the same time.
My sides are basically itchy skin, raspy voice (always clearing my throat) some weight loss...12 pounds, I'm now on about the 33 shot. Also, as I mentioned before a lot of hair loss, but it seems to have stopped for now.
Every now and then I do feel tired, and my muscles ache.
I've missed very little work.
So far every shot has been ok except for # 4. This one landed me in bed for two days.
I drink about a quart and a half of water a day. I really should be drinking more. I don't fail to recognize that this is extremely important and would probably help a lot with my minimal sides. I'm just way tooooo lazy when it comes to the water.
Avatar universal
Howdy! It has been a while since we've "spoken." I trust you are doing well, yes?
-Michael
Avatar universal
I have experienced less physical sx. For me the most unbearable side were the riba rage and anxiety or depression which I could not control.
Avatar universal
I have only had 14 of 48 shots so far and I would say my most troublesome side has been the rash with itching. I feel extremely fortunate to have so few sides. I do clear my throat a lot and didn't really think of that as a side affect until I saw someone else posy about that being a long term side affect of the disease and not just of the treatment. I do lose my temper faster and may be more depressed but no meds for that as of now. No hair loss that I can see but my hair is very thin and short as it is and after losing all of it to Chemo, I feel fortunate. Never had the aches or chills and fever after any shot either. I am waiting for the result of my 12 week labs to see if I will be continuing on with this. It sounds like in any case I may be taking the Pegasys as a maintainance dose no matter what the labs show. Do others agree with going on with the shots as a way of maybe helping fibrosis? Thanks and best to all.
Avatar universal
Oh, I have had less energy and get out of breath faster but I have continued working as a carpenter the whole time but being self employed I control my time so thats a plus. I haven't lost any weight nor is my appetite any less. Does anyone else feel they are just trying to get this year past them as fast as possible? On the one hand I hate to think this way since the years go by so quickly anyway and none of us are getting any younger. I just don't have the "patience" to think of it day by day that well.I find myself living Friday to Friday, which is shot day.
Avatar universal
Hi Pete, i also am on week 14 of 48(started 10/17/03) and am waiting for the test results to see if i will continue the Pegasys/Copegus treatment. My sides have been minimal with the exception of the 1st week which felt like my head was in a vise. But as far as treatment helping the liver fibrosis, the numbers i have researched have seemed to support that idea. even if you just delay the progression, it helps you wait for something to come along to beat this thing. That is to say as long as you can tolerate the treatment. Good luck on the test. Dutchman
Avatar universal
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
Avatar universal
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!!

Avatar universal
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

Avatar universal
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.
Avatar universal
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!
Avatar universal
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)
Avatar universal
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.
Avatar universal
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.
Avatar universal
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 :)
Avatar universal
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.
Avatar universal
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
Avatar universal
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.
Avatar universal
Tina, I
Avatar universal
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.
Avatar universal
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.
Avatar universal
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.
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