started hep c treatment

[trolleater]

I am going into the third week of the hep c treatment, and i am feeling worse then I ever did, my gums are bleeding, i get headaches, I am chronically tired, can no longer function in day to day life, and a little depressed, on top of it all for the last several weeks I have a rash that pops up all over my body and the itching is crazy.. creams and ointments seem to help a little, dr gave cream, and some pills that help a little, is this the way it is supposed to be, the Dr says this is normal, but I was sugar coated in the start, I was told that a few people get this rash and maybe some people experience headaches and fatigue but most people have little side effects, anybody else like me ......?????  oh yea I forgot to talk about the interferon (pegasys) once a week, and then a bad flu for the next couple of days.

[trolleater]

just to let you know I am on the triple tx. , pegasys, ribasphere, and incivek, and they are rough rough rough.... do not feel good at all, I can only hope that this is worth it , but I am geno 1a, in stage four, last load cnt was close to 10 million, I also have diabetes and nueropathy from the diabetes I have to inject 25 mg of insulin twice daily to keep blood sugar at 120-140 ....

[hrsepwrguy]

Unfortunatly these are all very common side effects of triple treatment

Rash
Rash developed in 56% of subjects who received INCIVEK combination treatment [see Adverse Reactions (6.1)]. Severe rash (e.g., a generalized rash or rash with vesicles or bullae or ulcerations other than SJS) was reported in 4% of subjects who received INCIVEK combination treatment compared to less than 1% who received peginterferon alfa and ribavirin alone. The severe rash may have a prominent eczematous component.

http://pi.vrtx.com/files/uspi_telaprevir.pdf

I would advise to stay on top of the rash as it can get out of control quickly

http://www.incivek.com/hcp/assess-and-manage-rash

The most common, but less serious side effects of PEGASYS include:
flu-like symptoms. Symptoms may include: fever, chills, muscle aches, joint pain, and headaches. Some of these symptoms may be decreased by injecting your PEGASYS dose in the evening. Talk to your
healthcare provider about which over-the-counter medicines you can take to help prevent or decrease some of the symptoms.

http://www.gene.com/gene/products/information/pegasys/pdf/pegasys_mg.pdf

Common side effects of COPEGUS taken with PEGASYS include:
• flu-like symptoms-feeling tired, headache, shaking along with high temperature (fever), and muscle or joint aches
-mood changes, feeling irritable, anxiety, and difficulty sleeping
• loss of appetite, nausea, vomiting, and diarrhea
• hair loss
• itching

Tell your healthcare provider about any side effect that bothers you or that does not go away.

http://www.gene.com/gene/products/information/pegasys/pdf/copegus_mg.pdf

I know i used copegus instead of ribasprere but riba is riba, please keep your doc informed of all side effects that you may be having, especially since you have so many other things going on other than hep c

Have a great day

[frijole]

Your condition sounds absolutely normal.   During the first few weeks the body has quite an adjustment period to these meds.  You should get your mouth checked out.  Tx does dry out the mouth and you lose the antibacterial benefits of the saliva.  Many suck on mints or tic tacks to try to maintain moisture in mouth.  It is important to get your mouth cleaned regularly on tx.  You don't want to lose any teeth and it is possible.

So far your rash sounds acceptable but keep on top of it.  Get a referral to a dermatologist is necessary.  The flue after injection for a coupld of days also sounds normal.  I have never personally had this.  With Pegasys I had unusal energy bursts the day after shot.  With PegIntron I generally felt horrid the day after shot -- but in each case, it leveled out after the first few weeks.

Neuopathy can be a sx of tx too so watch that closely.  Bless your heart - you must feel like a pincushion with the diabetes meds and the interferon.  There are others much more knowledgeable about that than I but I do know it is a negative predictor.  Thank goodness for the PIs that equalize some of that.

frijole (bean)

[HepKat]

Hi, there.  Just to let you know, I'm one of the lucky 4% who got the severe rash w bullae, vessicles and all the other fun stuff.  My rash started almost immediately and quickly spread to over 75% of my body.  I'm taking oral and topicals w/o much relief.  Monday, my doc said I couldn't stay on the Incivek treatment so I'm off.  (Insert your favorite swear word here)

About 5 years ago I completed the Peg/Riba protocol.  Sadly, not the results I was hoping for, but hope springs eternal.  I always planned to spend the day in bed after my shots.  I didn't always end up there, but it was always nice to know I could if I had to.  It didn't really ease up much the rest of the treatment, but it wasn't horrendous most of the time.  

I just lasted a little time on the Incivek and I can tell you, I'd do 2 yrs on Peg/Riba over 3 months on Incivek.  BUT...if I could tolerate it, I'd be back on it in a New York minute!  With a 70% CURE RATE, it's worth the discomfort.  I wish you the best of luck.  Make sure to keep open communication w your doctor/nurse and let them know what your problems are.  There are so many options to manage your symptoms, but no one can help you until you let them know!

[ceanothus]

You've gotten some great advice above, and I just wanted to add my agreement. Yes, your sx sound pretty normal, and yes, the Incivek was hell for me too. Weeks 2-3 were the worst psychologically, as that was the point of realizing how very much harder it was than I had expected, and that was the only period in tx when I seriously thought I wasn't going to be capable of handling the sx and might have to quit. It took the support from this forum plus about 2 weeks of readjusting my own expectations and my schedule, and then it did become easier on the psychological level anyway. Physically it stayed very hard until about 5 days after finishing the Incivek. I'm now on week 40 out of 48 and I still feel a lot crappier than I did on my last SOC tx, but way better than I did on the Incivek. Do take all the advice you got from previous posts about managing the sx, as they can and do snowball if you aren't aggressive about them, especially the rash and any nausea. Best wishes, hang in there – it will all be worth it in the end!

[mp93096]

stay strong. i experienced the same sides you talk of and more. i am on my last day. i have one more rib pill to take tonight. still chroniclly fatigued and headaches and flu symptoms rash slowed way down after incivek was done at 12 weeks. dit 24 week triple with incivek. it is doable but hard. stay strong you can do it. the alternative is unacceptable. good luck.

[JungleHeart]

I am starting tx in about six weeks.  All my doctors downplay the sides, like, "Oh it won't be so bad."  I mean, how do they know?  They're not suffering through it.  At least I'm glad I came here and know what to possibly expect.  I also read recently that finally the research type doctors are admitting and realizing that the sides of triple tx are a lot worse than they expected.

But, as pooh said, right now we have no choice.  I can't risk waiting for the super drug coming down the pike - with no interferon and few sides.  Most of us here certainly would wait - if we could.  I can tell you I am NOT looking forward to this to put it mildly.  I will be doing Victrelis, which is a relief to me since it doesn't have that awful fat requirement of Incivek.  I don't know why the dr. decided on Vic, but it's okay by me.

That was an absurdly long lead in to one of your issues, so here we go:  I wanted to comment on your bleeding gums.  Last time I got my teeth cleaned the dentist told me that my top front gums bled a lot and probably I was an open mouth sleeper = dry mouth.  So he told me to use Biotene, a dry mouth oral rinse that you can swish around up to five times a day.  Try it.  I think it will help.  It's over the counter.

[trolleater]

  Thanks to everyone for all the great post, all the information is so helpful, I used this site prior to treatment because the hep c had me feeling horrible, now that I am in treatment I am so glad that everyone is here for me again.  I will say that this is the hardest thing I have ever done, and I have done some hard things, it wasnt but a few years ago I was laying on the floor almost dead from a vessel bursting in my head, at least that was quick, this feels more like a slow death, someone just needs to bury me with honey and ants, maybe that would be worse .... MAYBE

  I will follow back up on this thread in 1 week with progress, if nothing else for those that have just started tx, maybe I can help, or be helped but right now I have got to go scratch....

[marivirginia]

it does get better ...maybe worse, then better...incivek is a bear..hang in there!!!

[Idyllic]

The above stats are spot on: a whopping 56% of the subjects in the Incivek study got the rash. Act now and don't waste your time on OTC solutions.

I agree 100% with Pooh: It is a systemic reaction and you need a two prong attack:

Control the Itch:
Antihistamines help relieve rashes and hives, as well as sneezing, itching.
Ask your doc for ℞  Hydroxyzine (Atarax) or Diphenhydramine (Benedryl). Both meds are relatively sedating so you may want to consider a non-drowsiness antihistamine during the day such as Fexofenadine (Allegra).

Contain the Rash:
Corticosteroid creams or ointments relieve itchiness and halt the spread of rashes: a moderate steroid such as ℞ Fluocinonide Ointment or a very potent topical such as ℞ Clobetasol.

Hang in there★

[trolleater]

Just an update, the rash is a little better, but now I am constantly wanting to throw up, or at least feeling like it, no concentration, throat swelling, and my right side inner thigh area hurts like heck and is making it hard to walk, I have appt tomorrow, but this was not what I was expecting at all, I knew it would be bad, I even told family and friends it would be worse before it got better, but I did not think this bad, I am only on week three, and on top of everything else, I dont know If my place of employment (almost nine years) is going to let me have as much time off as I might possibly need, so also depressed... this *****...

  I know there are others out there in my shoes I just wanted to wine a little bit.........thanks

[Idyllic]

I know what you mean Troll. I did the same thing. I told people treatment would be different this time and perhaps even harder but I would survive so don't get caught up in my drama. Then I freaked around week three when I realized just how utterly horrible and weird the Incivek sides really are.

I was nauseous in the beginning too. You can't motivate yourself to do anything when you feel like that. Be aware many doctors suggest the same antihistamines listed above for nausea due to their antisemitic properties.

I found antihistamines did zero to alleviate medication-related nausea. You might want to ask about Zofran tomorrow in addition to the topical steroids Pooh mentioned above.

I am glad your rash seems better today.  I know it feels like you can tough it out but these side effects have great potential to snowball out of control.

It helps to at least mention these things to your doc so if something happens you can just call and they can issue a prescription. (OK?)

I am in no way suggesting this is the case with you however the throat swelling was my first symptom of acid reflux. I thought it was because I was in a state of nausea all the time.  I never had acid reflux in my life so I had no idea what it was. After that I would feel slight pressure in the breast bone area. I could have chewed a Tums or DiGel if I knew what it was. I ended up taking a PPI (Proton Pump Inhibitor) and..... the Tums and an H2 blocker.

☀¸.•*´★¸¸.•*¨*•Please be sure to ask about•☀¸.•*´★¸¸.•*¨*•*♦¸.•*´✡ •*¨*•☀¸.•*´★side effect management tomorrow *♦¸.•*´✡¸¸.•*¨*•☀¸.•*
♪•*¨*♫There is no medical reason for you to feel this miserable ♫•*¨*♪

[orphanedhawk]

Since you mentioned your gums bleeding, I thought I'd remind you to be extra vigilant with your dental hygiene.
Dry mouth is also a common side effect and can exacerbate tooth decay.
You can combat it with biotene products.

Good luck with tx, just take it day by day.

[pooh55811]

I had bad nausea and bloating (felt like I was pregnant with a 60 pound baby). I also had some vomiting. There was no way to get comfortable and all I could force down was Greek Gods Yogurt and some saltines or a piece of toast. . However, once I was on the Zofran 8 mg every 8 hours, all of those symptoms and more disappeared. The Zofran is for drug induced nausea and it works well. If your doctor hesitates, be assertive. That nausea and vomiting can affect your chances of SVR if you vomit up your pill or cannot eat the fat requirement. And the longer you are ill with the drug induced nausea and vomiting, the worse you will feel systemically.

I wish I had gotten assertive sooner.

[1swimmer]

Hey kid, at least you have an appt. tomorrow. Be wary of your swelling throat. Not something to mess with if it got worse.
I'm on Vic so my experience is different. A few things to think about; if you ever have an emergency visit to the hospital remember to bring your meds and rx. Also, get an emergency number for your doctor. Keep drinking water and hang in there.
C

[Idyllic]

Correction:
Oy. I meant "antiemetic" properties and I the spell check inserted antisemitic when I had some kind of typo.

An antiemetic is a drug that is effective against vomiting and nausea.

[rambleon40]

Thrombocytenia might explain the bleeding gums.

Therapy can cut down your platelets (thrombocytenia - would lead to bleeding gums), your white blood cells (neutropenia), and your red blood cells (anemia).  

http://www.hcvadvocate.org/hcsp/articles/Pockros-2.html

[trolleater]

  Two in morning, cant sleep, when I did the dreams were vivid and seemed real, I was dreaming I was being haunted and living in a farm house, the pain in the pelvic region is way worse, and the rash is back, I did take the incivek at seven hrs instead of eight, but I havnt been sleeping and had to go to bed, so I took it an hr early, is this not a good thing to do, or does it matter ? the direction say 7 to 9 hrs...

[coeric]

talking the medicine an hour early will not matter.  after the initial 5 doses you blood level is at steady state.  there is a trial going on now that is comparing 12 hour dosing with the 8 hour dosing. when i was doing incivek, it tried to do my doses at 8 hour intervals.  i am at week 44 and have been undetected since week 4.
eric

[orphanedhawk]

Ribavirin can cause sleep problems as it is a mild stimulant. I was told it was fine to take it with breakfast and lunch, 5 hours apart is okay. Do be sure to eat a substantial with it or it can cause nausea.

[GrammyA]

Here I go again- failed tx about 9 years ago when the Peg and Riba were the only 2 involved.  My thyroid was being destroyed at 14 weeks and I was covered in the rash.
TODAY - I began the new triple treatment with the Incivek as at 60 years old I really want to remove this gray cloud that follows me.  I am also stage 4 cirrhosis.  
This being the first day and my shot not happening for a few hours yet I have no complaints.  REST ASSURED - I remember the prior treatment side effects and fully expect to be needed some advice from all of you as I move forward to kill my little dragon.
GrammyA

[trolleater]

  Thanks for the positive feedback, starting to get worried, maybe this wont work...

[coeric]

trolleater
orphaned hawk has a good point about the ribavirin too.  I feel wired after taking the ribavirin and could not take it in the evening because it contributed to insomnia.  i am only on 700mg now and was told i could take it all in the morning with breakfast. i was told the reasoning behind taking ribavirin twice a day was to reduce stomach aches.
GrammyA, welcome to the forum.  i am also experiencing cirrhosis and this forum has been a god send.
eric