I am at 19 weeks and will do my 20th inj. on this coming Monday.
As far as I can see, I have lost no hair, or exceptionally little. I am going by how many hairs I lose in a day and it does not seem any more than usual, just one here and there, but that has always been the case. I am only at 19 weeks, though, and I think some start losing hair later, like 5-6 months. Of course, according to the trials, not eveyone loses hair anyway.
I was so afreaid I would get some side effects that would make me have to quit the meds (severe rash, severe anemia or blood count problems, retianl detachment, etc) that I was and am happy I did not. I am not ready to run a marathon, but I am not in bed except for at night time (except for a couple of weeks before I got the Zofran).
My main problem with side effects is that they wear on you, not that each of them is severe. But that is just me. I will admit crapping shards of glass might have been a deal breaker had I not figured out how to prevent it. The rash is a pain in the butt but not a deal breaker. It does not prevent me from doing anything. The nausea was a bummer and it did make me sick in other ways as I was not eating much, but nausea is controllable and I should have been on it sooner and gotten the Zofran sooner. The fatigue and malaise wears on a person, or at least on me. I cannot seem to get much of anything useful or productive done, or at least not much. I try to do something productive each day and make some headway. By wearing on a person I mean a person gets sick and tired of feeling like he/she has the flu. I get tired of all of the pills I take for the sides. I get tired of the daily ritual. (Zofran, Wellbutrin, and claritin about 6 - 7 am, start drinking some of my gallon of water for the day, eat about 8 am, riba about 8:30, shower and wash my hair, apply desitin cream to the sore butt, put restasis eye drops into both eyes, apply fluocinonide ointment to the rash and try not to get it on everything, rest, take my calcium and vitamins, do something constructive and/or productive or get lab drawn, rest, use Huggies wipes every time I go to the BR, take Zofran about 1 pm, eat lunch, do errands or doc visits, rest, fix dinner which I usually don't feel like fixing because nothing sounds good, eat dinner, take the Riba, rest, watch a DVD, apply more fluocinonide ointment, about 9 pm take another Zofran and take hydroxyzine for the rash and itching, insert a Prep H supp., go to bed, get up to pee since I drank so much water and keep drinking all night since I am thirsty, get up again a few times, finish one 24 hours and start the next.) Then there are the weekly lab draws, the weekly doctor visits, the visits to the MD consultants (such as opthamologist, dermatologist, cardiologist), phone calls from the case manager, etc. For me, this ritual is getting very old, very fast. It seems to consume my days. It is like I am losing a year (at least) of my life. So for me, it the side effects wearing on me, not that any one of them is exceptionally bad or intense.
I am not complaining. Like I said, I still think my side effects are not bad in comparison to some other people. They just wear on me. However, I will finish treatment (48 weeks). With luck, I will attain SVR.
This is obviously not scientific or exact, because it is all in the eye of the beholder, but personally, I think my side effects were/are not bad. I did have the shards of glass crapping but once I figured out how to prevent it, I did not have it again. I did have nausea which got pretty bad, but that has been well controlled now with Zofran every 8 hours. I had a minimal rash until week 10. Then it got worse, but that is probably due to Riba and not Incivek as I still have it (it moves around) and I have been off Incivek since Dec. 19th. It is being controlled with ointment and hydroxyzine. Of course, I had malaise, fatigue, flu like symptoms, no energy, etc.
However, I have had no blood count problems whatsoever, no major life-threatening rash, no major eye problems, no constant vomiting, etc. I have had nothing that would cause me to have to stop treatment. This is not to say the side effects don't wear on a person. They do. I am sick of them, lol. But I still consider myself to be pretty lucky in the side effect department.
Obviously some side effects are serious and a person has little control over some of them (like a nosediving hemoglobin or white count) but I think the key to controlling many/most of the side effects is to stay on top of them or ahead of them and do not let them get out of control. They snowball, rapidly, so getting right on them is imperative.
I do think many people have fewer side effects than I do but they don't post much.
Did you experience much loss of hair?
My husband has not had terrible sfx. He's on week 10, and it's definitely starting to wear on him, but he hasn't missed any work, and for the most part it's been much better than we expected. He had one rage incident (not fun) and has had some fatigue. Just got the INC rash 2 days ago, dr. already prescribed something that made it better today. Yes to the hair loss, I think this is what bothers him the most.
Some people go thru a grueling tx with many sx's but some don't. It depends on many factors like your age, how long you've been infected and how healthy you are. You multiply those factors by desire to be HepC free and you have your answer. Check out this young lady going skydiving. She is not doing bad at all.
Thanks for being so precise in your answer. The first time I treatedI felt exactly as you described.Had most of the same sx and responded in much the same way to all the daily issues.
I can't tell you how much i appreciate the time you put into your answer. I know everyone's experience is different, but you have really helped me today.
I will be starting treatment again very soon and you have helped and comforted me more than you could ever realize.
I will keep you in my prayers as you move forward on the trip to SVR.
May God hold you in the hollow of his hand for the rest of your journey
I haven't done the triple tx.
What I know is the first time I did tx, I was miserable.
This time, it has been much easier. I don't think its predictable.
As my son often points out to me, more people post online to complain than to praise.
I think my husband would describe his side effects as moderate. He had extreme chills/rigors for 1 day, Inc rash for a few weeks, the anal pain/bleeding from week 3 - week 13, had symptoms of anemia week 12-13 but his hgb was in the 11's, and now bad taste/metallic taste/fatigue. He's missed two days of work (1 due to chills/rigors and 1 due to symptoms of anemia). He has not lost any hair. He's currently on week 19 of triple.
Hi, I had no sx to mention. Just bone pain for maybe 24 hrs total and Alieve took care of that. Sore mouth 1 day and 1 simple dose of Ora-gel made that go away per-mentally. But I did not do the 2 new FDA drugs. Just Riba and interferon and maybe a BMS product (clinical trial).
Other than those mentioned, my live was pretty full and eventful with my activities
I agree with Orphanedhawk's son. Who mentioned that more people with problems go on line than those of us who don't
Good-luck with what ever you do. Ginger.
I am only on treatment since 6th January (5 weeks) but I must say that I don't have severe side effects (yet). The first two weeks I felt sick, naussea, flu-symptoms, fatigue, depression...but suddenly after the second week, I feel much better. I started with 4 weeks with Ribavirin + Interferon and yesterday I added the Victrelis. So far so good!
Good luck everybody -
I reallly appreciate you and all the others that posted about
their treatment experience. I pretty much had arrived at the
conclusion there were some folks in "cyber land" that like yourself had
fewer sx than are often mentioned.Thanks for sharing.
I wish you continued health and minimal sx.
Thanks so much!
Glad to hear your husband's experience has been better than expected.
I need all the positive information I can get, and you husband seems to be
doing well with what can be rigorous at best. I bet he's awful glad to have your support. I wish him continued sx that's better than expected. That's a good thing!
I want to tell you a story to give you hope.
There was a guy here a few years ago who did interferon/ribavarin tx at least 6 times. I can never remember if it was 6 or 8, and never succeeded
Then he was in a PI trial and, he finally beat the virus.
He's one of the reasons why the triple treatment is available now.
Keep in mind that he did it, and you can too!
But, I sure won't be following in her foot steps.
Glad she's well and glad I had the opportunity to see her jump.
That's a close to the experience as I need.
Loved the view
Thank you sooooo much for what you bring to the Forum!!!
I needed to be reminded of the courage some people have shown in the battle for SVR. I also needed to be reminded they made it after so many
attempts. I feel much better after your encouraging message...
Thanks a million times over...
I think you're right there are probably a lot of people who don't share their
victories. Thanks for your support on a rather down day.
The side effects that I experienced so far ( 3 months) have not been horrible except the anemia, but that is so much better. Just remember to keep a positive attitude, I believe this has helped me minimize the negative side effects. Keep smiling.
i'm in a trial with gs-9451 (protease inhibitor). i was on it for 24 weeks with SOC. i have had minimal sx. the worse sx for me is my hair loss and anemia. i still go to cardio classes 3x/weekly and i work part time. i always try to keep a positive spin on things. we want to defeat the dragon. peace be with you. belle
Thanks for all the good info and personal reports. It is very helpful when
approaching treatment to hear the good and the bad.
I'm responding again to bring this to the top for another new member posting
that needs to know not everyone gets all the very drastic and
scary side effects. One does however need to be prepared to jump on whatever happens as quickly as possible.
Well Wishes for a New Candidate