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Avatar universal

side effect

are the side effects any less if your viral load is low and minimal damage? I have been having anxiety problems over this and wake up shaking. I am now on anxiety meds and zoloft to even me out before I start meds in 4 days. I can't seem to get over fearing the worst
103 Responses
Avatar universal
how successful is the triple therapy tx in keeping the hepc permenently away? it seem allot of bloggers are having to go back on tx.
Avatar universal
Days do go by slowly and then it's 6 a.m. And it starts all over again.  Just finished my first week and as I read all the posts I feel comforted that  I am not a hypochondriac. Thank you for all the encouraging remarks we ALL receive and need.
163305 tn?1333672171
Not sure what you mean by ' a lot of bloggers have had to go back on tx"

Triple therapy was only approved in May 2011.
Perhaps you mean those who may have relapsed on SOC, interferon/riba, not triple therapy which improves statistically the chances of success for genotype 1.


Triple therapy comprising pegylated interferon-α, ribavirin and telaprevir or boceprevir increases sustained virological response rates to ~70% and allows to shorten treatment duration in ~½ of treatment-naïve patients with chronic hepatitis C genotype 1. Sustained virological response rates in treatment-experienced patients depend on the response to previous treatment, ranging from >80% in previous relapsers to ~30% in previous null responders.
Avatar universal
Thanks! ! I surely would not have to repeat this. My viral was low and minimal damage to liver but I am geno type 1.Still shaky , comes and goes. nurse seems to think it is from the incivek. My shots well are during okay now. Thanks again for your time and commitment to us new people.
Avatar universal
I am sorry but I also wanted to ask you another question. My Dr want to see me in 2 weeks. Then wants to go to once a month. That seems long to me.
1747881 tn?1546179478
Your doctor should base your lab work on your response to the meds, I had to go every week for the first 4 weeks then every 2 wks up until week 12 then 1 time a month after I was deemed stable, at around week 30 I showed a big drop in HGB and had to start going weekly again for about 6 wks then back to every 2 wks.

Yes that does seem long, at the minimum you should be going every 2 weeks until he is sure that you are stable

Laboratory Tests
HCV-RNA levels should be monitored at weeks 4 and 12 and as clinically indicated. Use of a sensitive real-time RT-PCR assay for monitoring HCV-RNA levels during treatment is recommended. The assay should have a lower limit of HCV-RNA quantification equal to or less than 25 IU per mL and a limit of HCV-RNA detection of approximately 10-15 IU per mL. For the purpose of assessing response-guided therapy eligibility, an “undetectable” HCV-RNA (Target Not Detected) result is required; a confirmed “detectable but below limit of quantification” HCV-RNA result should not be considered equivalent to an “undetectable” HCV-RNA result (reported as "Target Not Detected" or "HCV RNA Not Detected").

Hematology evaluations (including hemoglobin, white cell differential, and platelet count) and chemistry evaluations (including electrolytes, serum creatinine, uric acid, hepatic enzymes, bilirubin, and TSH) are recommended prior to and at weeks 2, 4, 8 and 12 and as clinically appropriate [see Adverse Reactions (6)].


5.17 Laboratory Tests
Before beginning PEGASYS or PEGASYS/COPEGUS combination therapy, standard hematological and biochemical laboratory tests are recommended for all patients. Pregnancy screening for women of childbearing potential must be performed. Patients who have pre-existing cardiac abnormalities should have electrocardiograms administered before treatment

After initiation of therapy, hematological tests should be performed at 2 weeks and 4 weeks and biochemical tests should be performed at 4 weeks. Additional testing should be performed periodically during therapy. In adult clinical studies, the CBC (including hemoglobin level and white blood cell and platelet counts) and chemistries (including liver function tests and uric acid) were measured at 1, 2, 4, 6, and 8 weeks, and then
every 4 to 6 weeks or more frequently if abnormalities were found.

Avatar universal
Thanks for onfo. i live 11/2 hour drive from dr.
1747881 tn?1546179478
My docs were out of town as well, they would fax the lab orders to a local hospital and I would have them done there so I didn't have to travel so much, you might ask about doing something like that
Avatar universal
I don't mind the drive. It actually relaxes me some. I just would rather be seen  more often than 1 @ month. I see him again in 2 weeks for my 4 week visit. I will ask him then.
163305 tn?1333672171
I agree with horspwer~ how often you get labs should be based upon your response to tx.
My team told me from the beginning I would start out with weekly cbcs. I saw either the doctor or the NP once monthly.
As long as things were fluctuating my labs were once weekly or every other week. Once they stabilized, it was dropped to one every 4 weeks.
However I could always phone the nurse or email my doctor if I needed assistance about anything.
Avatar universal
third shot last Fri. Tues, the shakes finally slowed down.Does anybody else get these shakes with the shots? 2 week test blood work came back good. I hope time will let me tolerate the shots better.. Took the Zofran for nausea. Seemed to help. God bless!
Avatar universal
haha - my bloody side aches too!
Avatar universal
good answer hawk. Wish my liver could wait!
Avatar universal
5th week and blood test just came back. I am UND !!!!  Thanks again for all the support.
2114467 tn?1358213856
Sure helps when you get some positive result!
Hang in there.
2147300 tn?1369693288
Congrats on UND at 4th week.  This is first goalfor you and milestone.  You are 1/3 done with the nasty Incivek and your next goal is 12 weeks UND. You will be done with Incivek and trust me, things will get better.  Your second and final 12 week segment things should smooth out for you. Your stormy ocean waves will turn into a more rolling seas.  

You are climbing the mountain and don't get discouraged. If you do, come here and talk to us. everyone is at a different stage and someone will be able to relate.

I made several good friends here that have finished tx. They are helping me through my last week right now. Last shot for me is in 2 days. feels wonderful, don't rush it, that will only frustrate you. You will do 24 weeks with no time off for good behavior. Plain and simple, do the time and start your countdown. It will be there before you know it.

Congrats again on UND. I am so happy for you, you can;t imagine.  

Avatar universal
Thank you so much for your kind words. I hope the best for you also. It must be so nice  finishing. Congratulations! Yes, I will be happy when incevik is over with. My blood count has dropped and need to go back in a week to check it. Any special diet to help with the blood.
Congratulations again and God Bless!
Avatar universal
know the good news is I am UND in the 4th week . The bad news is I have the rash. I am using desonide 0.05%, and atarax. I have not taken the atarax as tonight is shot night and how many drugs can your body take? Does anybody have an answer to the rash?
Avatar universal
if rash gets worse, dr will pull me from incivek. I am hoping to finish as I only have 4 weeks left. My whole body is covered. I am going to be finishing up thr steroids in 4 days and I am afraid it will come back worse. I am finally better too, where eating is not a chore. I have had this rash for over a week.
1840891 tn?1431551393
I'm sorry your rash has gotten so bad. We've had a number of people here who have had severe rashes; some had to quit Incivek but some managed to finish it. I think the best thing is to get to a good dermatologist ASAP. As I recall, most of those people had to take oral steroids plus topical ones, plus Hydroxyzine for the itch, but your post mentions being almost finished with steroids, so maybe you've already tried all the usual stuff. I hope there is still more that can help you. If your doctors really want you to quit however, then do it. The rash can sometimes become life-threatening in itself, and you don't want to be killed by your treatment! Some who have had to stop Incivek early still go on to SVR, and 8 weeks would still give you a good shot at it, especially if you were UND early. Good luck!
Avatar universal
I haven't started treatment yet.  I've been building my library with "what to do if"....scroll all the way down to a post made by floridian7.."rash on triple therapy"
A lot of info.  Once there, scroll down to orphaned hawks reply and read what he said about oatmeal.  I wrote it down because it sounded good to me and I have it on hand if needed...best of luck
4333925 tn?1359106042
I just started taking inc, peg, rib just this week. My 1st shot was this past thursday. It was very very scary even with the click pen. I have had minimal side effects. That I am grateful for and I hope that it stays the same way throughout the rest of my 12 weeks. I just joined this website and it has helped me out a lot. Just remember you can do this and everybody on here is here to help.
1815939 tn?1377995399
From personal experience with a bad rash while on treatment, it would be my recommendation to get this rash under control ASAP. Hit it hard from several angles. These drug rashes have a major tendency to snow ball out of control. So getting the rash under control and then keeping it under control are extremely important.

I was on Incivek, Interferon, Ribavirin. I developed a bad rash about week 10. My doc ignored it. I finally demanded treatment for it but it still took several weeks/months to get it under totally control. That was mainly because they did not order the correct meds to begin with and/or they did not order a high enough dosage. once I got on the corrects meds and dosages, the rash was controlled. By the way, I found the over the counter meds totally useless.

Here is what I used: (all prescriptions)
Fuocinonide ointment (topical)
Clobetesol Solution (topical)
Hydroxyzine (Atarax) 50 mg every 6 hours (for rash and itching)

It is quite possible that the Desonide is not strong enough. The ointment I mentioned is a stronger topical, but a person needs a stronger topical io get the drug rash/reaction under control. The rash still never got under control until I was on the Hydoxyzine 50 mg every 6 hours. The Hydoxyzine is what made my rash turn the corner. I never had any problems taking the rash meds in conjunction with the Hep C meds. As far as I know, there are no contraindications for doing so, but check with your pharmacist if you are concerned. Many of us have been on Hydroxizide and steroid creams or ointments and have not had problems (that I know of) taking them together.

You need the Hep C meds if you are going to get rid of the virus. Therefore it is important that your doctor do everything possible to treat this rash aggressively and appropriately in order to get it under control so that you do not have to stop the meds early.

Best of luck.
Avatar universal
Pooh would you recommend using the topicals as well as the hydroxyzine when you first notice a rash?  I wrote down the oatmeal treatment just in case it happened on a weekend.  I'm going to ask for a rx just to have on hand.  That rash sounds like it could be brutal
1815939 tn?1377995399
And Shocked

I have to post this in 2 posts so here goes ...

I did not know much when I started treatment lasr year. Now I have a lot more knowledge about Hep C and this treatment, including side effects. If I was doing treatment again (let's hope not, LOL), I would get on top of the rash immediately and hit it with all I could. I am not talking about 1 or 2 little bumps. But if there are more than one or two and they are spreading, then I would treat it aggressively.

The topicals, if strong enough, will eventually clear the area on which a person puts them, but it may take 3 -4 weeks or more. Plus, the rash just moves next door, where one has not been putting the steroid cream or ointment. Then you attack that area, but it moves again, next door. The topicals won't get rid of a mod. or severe rash. They will only get rid of the rash in the areas one puts the steroid. The rash is from a systemic drug reaction.The topicals work only on the skin. But the cause of the rash is still there, the drugs we are taking, and it is a systemic problem.

I was using the Fluocinonide ointment first. It helped some, but it did not get rid of it. Then I got the Hydroxyzine pills and it helped at a lower dose, but it was not effective in clearing up the rash and the itching until I was using it 50 mg every 6 hours along with the Fluocinonide ointment and the clobetesol solution.

1815939 tn?1377995399
And Schocked

2nd part .....

So yes, if I had a moderate or severe rash, even a mild rash, I would take all three of them, the Hydroxizine pills, and the topical ointments. A good dermatologist will prescribe all 3. They usually know that a person with a drug reaction needs to get on top of the reaction immediately before it snowballs.

I am attaching a link to some photos of the rashes (mild, moderate, severe). My only disagreement with those photos and the recommendations, it that I think they are way too conservative, way too slow to treat the rash and to treat it aggressively.  Not treating or treating too conservatively is not in anyone's best interest. We have had members who had to quit treatment because their doctors did not properly manage their rashes and let them get out of control.

BTW, I started out using Benadryl and over the counter hydrocort. cream. That worked for 1 or 2 red bumps, but it was totally worthless when the rash took off.

The rash can take many forms. At its worse I had hives, confluent hives, hives piled on top of hives, little red bumps, big red bumps that were not hives, pinpoint sized bumps, large flat red placques, red skin.

Here are the photos:


That was for Incivek, but the Ribavirin rashes look similar. Mine was/is a Ribavirin rash.
Avatar universal
I am using Clobetasol .05% cream and I am on hydroxyzine 25 mg , I was only taking the hydrox in evening as nt to gettired. My dr said to take claritin in day but I have started to take hydrox in day also. I seemed to be getting better but after my weekly shot, it seemed worse the next day. my back seems to be clearing up. Looks like Iam sunburned. My legs look scary. So many red spots I can't keep track Thank you everybody for all your great help. So comforting to hear this too will end  I hope.
God Bless everyone that has to go through this!!!
1815939 tn?1377995399
Neither Claritan nor Zyrtec did anything for my rash and/or itching. I may as well have been taking M&Ms. I know they help some people, but they won't help any of us who have/had rashes all over the place.

Yes, I know the "sunburn" well. My docs completely missed it. They thought it was my normal skin coloring, LOL. I said to them, "You know, I don't normally have red skin and I don't normally have bumpy skin. This is all part of the drug reaction."

Keep a good eye those rashes. If you are not seeing a dermatologist, I would recommend an urgent appointment with one, sometime this week.

Also, keep in mind, the rash may get better after finishing Incivek, but it may not. Mine did not get better. It got worse. I have had some sort of rash in varying degrees since last Dec. 1st. So that is 11 months. I have been off Tx now for 12 weeks and I still have some rash, although I have finally been able to cut down to 3-5 Hydroxyzine a day instead of 8.

I am hoping yours gets better soon.

Take a look at these photos on LookingForward's profile page. She had a terrible rash and had to have steroid injections.

Avatar universal
Checked the Incivek site and I would say I am moderate. Thank you. Great help. Also checked the last pics yo sent and that is about what I look like. I believe my legs have more, but my injection sites a the size of a golfball and red from 3 weeks ago. I am seeing a derm. He said it was not SJS. My Pharmecy complained I had used too much clobtasol cream. I am 5'10. How long can a tube last when you have it everywhere? So I backed of a little and that is when I seemed to get worse. Mostly my neck and face seemed to be on fire today. Thanks Pooh!
1815939 tn?1377995399
If you need the cream, then what are they complaining about. The pharmacy should not be complaining. That is not their job. They are not diagnosing your problem or ordering your treatment. They are filling a prescription.

A person is not supposed to pile it on, but sometimes a person has no choice. Most drug induced rashes will go away after the drug is stopped. But we have to take these meds or we will likely fail treatment. The drug that is causing the rash is still in our system. So, we have to control that rash or be taken off treatment.

To put it in perspective, one guy here was using a pound of steroid cream a week and was getting it in jars. He had to go off Tx. The rash eventually cleared but it took weeks.
The goal here is to get the rash under control so a person can continue Tx. There is no point in using so little cream that the rash continues to spread.
At 5'10" you probably need a lot. I am 5'7" and the tubes I get are big tubes.

The Fluocinonide did help me and eventually the rash would clear . However, it was the Hydroxyzine 50 mg every 6 hours that actually got it under control.

My experience with Tx over the past year has left me very annoyed with the incompetence of docs and other staff, especially when it comes to side effects, and it has transformed me into a very informed and assertive person as far as medical care is concerned.
Avatar universal
My husband had the moderate rash with Incivek, but there were times it seemed to be bordering on severe.  He took Hydroxyzine and used Triamcinolone ointment.  He used Eucerin body wash in the shower, took cooler showers, patted his skin dry, used Eucerin moisturizer on his skin after the shower, sometimes stood in front of the open freezer door, sometimes stood outside in the cool night air, and sometimes we put tea tree oil on the little blisters that formed (there were a few on his back).
Good luck with the rash.
4358482 tn?1354729591
thank you for your positive message !!
Avatar universal
Thank you! This is really tough. If I was not so far along and UND at 4 weeks, I am not sure I could have gone through this. Go to see Dr on Tues. for 8 week blood work. My energy level has drooped to 0 too. I guess this is good since I have now had all the side effect so no more surprises I hope. my skin where the rash is clearing, is baby soft. They did not tell mw I would get a free dermabration when I started this.God Bless everybody out there going through this. Hope they work hard on the other tx
4309115 tn?1357609883
Don't be afraid of fear,it disguises it'self in worry danger,everyone has fear,so your very normal,you just need to learn coping exercises,force your self to close your eye's and just concentate your mind(as much as you can) on your breathing,and keep repeating even though your fear will still come say relax relax,ti does work but I've had to force myself many times to do it,hope you cope.
Avatar universal
Dr. pulling me off incivek today as my rash is severe. I will be 3 weeks short. I was und at 4 weeks. How much does this lower my chances for svr
1747881 tn?1546179478
Vertex did a trial with an 8 week incivek/telaprevir arm here are the results

Study 108 Duration of Treatment

The telaprevir regimens were 24 or 48 weeks in duration, with telaprevir given in combination with Peg-IFN and RBV for either the first 8 weeks (T8/PR) or the first 12 weeks (T12/PR). For subjects who had undetectable HCV RNA at Week 4 and Week 12 (extended rapid virologic response [eRVR]), Peg-IFN and RBV were dosed for a total of 24 weeks. For subjects who did not achieve eRVR, Peg-IFN and RBV were dosed for a total of 48 weeks. Efficacy Results
Significantly more subjects who received telaprevir had SVR24 compared with subjects in the no-telaprevir group (Figure 11). SVR rates were 72% in the T8/PR group, 79% in the T12/PR group, and 46% in the Pbo/PR48 group.

1747881 tn?1546179478
For eRVR patients, which you were

Rates of SVR24 for subjects in the T/PR groups who had eRVR and received 24 weeks treatment ranged from 87% to 92%
1747881 tn?1546179478
I shouldn't say were because you haven't reached wk 12 yet, if you are still UND at wk 12 the eRVR stats will apply
Avatar universal
I am continuing on with riba and shots, but he said my rash was severe and he should have pulled me 2 weeks ago. I have swollen glands and getting really weak and winded. From reading other peoples posts, it seems I am not alone or unusual. I worked so hard at this, and don't want to risk anything.
Avatar universal
New side effect. Ankels and face are swollen after not having taken invivek for 5 days. Almost afraid to call dr incase he wants to stop the rest of the meds. Is swollen ankles and face part os side effects? I am also chilled all the time and I live in south FL.
1815939 tn?1377995399
Swollen ankles and swollen face are not listed as specific side effects of the drugs (at least not that I can find). However, the swollen ankles and face could be a result of one of the listed side effects of the drug or to some disease process that the drugs have caused.

Many disease processes can cause swollen ankles (cardiac problems, kidney problems, liver problems, to name a few). The same is true for the swollen face, although the underlying disease process may be different.

I did have swollen ankles and feet around weeks 8-10. At that time I was extremely ill with nausea, bloating, rapid heart rate of 180 per min., and several other side effects. Once I got the nausea under control, the swollen ankles disappeared and never returned. I blame them on some physiological process related to the nausea and bloating.  At the time I was seeing a cardiologist because I also had other symptoms, very rapid heart rate of 180 per minute and other symptoms. In my opinion, they were all related and they all disappeared after getting on Zofran for the nausea.

If it was me, I would call my doctor and make an urgent appt. with him/her. Your swollen ankles and face are being caused by some health issue and you need to find out what is causing them. The cause may be serious or the cause may not be serious. However, if it was me, I would get an exam and some tests to find out what is causing them.

Hopefully your doctor will do some tests to try to figure out the cause and treatment before yanking you off the drugs. If this is out of his/her realm of expertise, then he/she should refer you (on a very urgent basis) to someone who does know more about the symptoms and underlying disease possibilities.

Best of luck.

1815939 tn?1377995399
PS: If it was me, I would be concerned about feeling chilled all of the time. That is all the more reason to get examined and to get to the cause of the swelling.
Avatar universal
Okay advise taken and thank you. Called Dr today. This tx is beating me up. I feel like I 3 steps up and 4 down. Okay enough crying this too will pass. Everybody keep fighting. Lets make this virus extinct
Avatar universal
UND again at 12 weeks. Still dealing with itchy rash. Hair falling out as well. The price we have to pay. I pray not to relapse.
1815939 tn?1377995399
Congratulations on being UND at 12 weeks.
Avatar universal
  Congrats on the 12 wk Und. How is the swelling?  I was chilly when I Treated, from the anemia, but didn't swell.  I think you should see your Treatment Doctor about it right away. Did your last Labs(12 week) indicate specific problems, such as low hgb or rapidly dropping platelets, and what was your AST and ALT.  
    If they have lowered your Riba already, then you prob have hemolytic anemia and that causes the chilled feeling.  I remember one week, even my face and the bone in my skull, felt chilled.
   I hade an itchy rash that made my face feel swollen, and welts on my torso. But my face never got outwardly swollen, and as soon as I felt the feeling, I started taking anti-itch pills, called Atarax (hydroxyzine) about every 6 hrs, very regularly.
   Lots of us have just gone right into th E.R. with our side effects, on this Treatment, dont hesitate to do so, if you feel worse.
Avatar universal
Thanks. Have been to ER. They gave me benadryl. I have had ny heart checked. It was okay. I have atarax, but I did not think it helped the itching too much. Dr.right now is keeping his eye on my swollen glands. Swelling in face has gone down but ankles still want to swell. Not as much. I am taking a shot a week for the anemia. my Dr said he only wanted to give me 2000 instead of 4000 which GI prescribed. I am now feeling better but would really like my skin to stop drying up and itching. 2 more months. You really get a new understanding for what some people must endure to keep their health. Good luck everybody and hang in there. This website is wonderful!
1840891 tn?1431551393
So glad to hear that your facial swelling went down and you didn't have to stop tx for that. I had a lot of skin issues throughout tx and for at least 2-3 weeks beyond it. My dermatologist had several simple suggestions which helped me a bit: when showering, use tepid water rather than hot, and get rid of any soaps that have deodorant or antibacterial ingredients. I switched to one with natural ingredients and lots of shea butter (my choice has rose petals and smells fabulous too), and my skin was much happier with that. I also slathered on the moisturizer (Aveeno works well for me) all over while still slightly moist from my shower, before dabbing a little steroid cream onto the most reactive spots. Congratulations on your great progress to date, and keep on hanging in there! You have very good odds for SVR, and I hope you can get through the rest of tx without too many new problems. Best wishes!
Avatar universal
Well I guess I felt good for too long as I now have had enlarged lymph nodes in groin which had to be biopsied. Just about when I was so happy and about to finish up on tx.  This huge worry has to nock me to my knees again. I am sooo worried and have to wait a week for result. Has anybody else experienced this lymph node problem.
1815939 tn?1377995399
I did not experience the lymph node problem but apparently some people do develop lymph node enlargement on Hep C Tx. Here are some articles that I found about the subject.

"In total, 20 (9.75%) patients in control or 10/95 (10.52%) patients treated within clinical trials, were recorded to have lymphadenopathy during combination antiviral therapy for chronic hepatitis C. The most common site of lymphadenopathy was inguinal region in 08 (40%), followed by cervical region in 07 (35%) patients. .....The average time for onset of lymphadenopathy during antiviral therapy for chronic hepatitis C was 21 weeks.
In conclusion, lymphadenopathy at various sites distant from perihepatic region appears to be higher than that documented in previous studies. In majority of our patients, the lymphadenopathy was reactive and resolved upon cessation of antiviral therapy."


"In conclusion, we report that LNE at various sites distant from the liver hilum was observed in up to 4% of our patients during treatment of CHC
with PEG and RIBA. While being reactive in nature and resolving upon cessation of therapy in the majority of patients,de novo LNE may be due to
serious disease and warrants further investigations"


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