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
I want to tell you how I think it is..... we all will have opinions. There are absolutely NO rule of thumbs to follow with the disease OR the treatment effects! Every person will experience different ups and downs - some have all the sides and some barely any. Some have them severe and then others go to work everyday, still exercise and live like usual. There are NO crystal balls that can predict how your body will fare. HERE is my suggestion- expect the very worse and be prepared for all the side effects to happen. Make sure you have help, that you have educated yourself on the meds and how to take them to be successful --- EXPECT it to be horrific!! AND - expect it to cure you from this dreadful disease that could take your life and be more horrible to endure then the treatment ever thought of being.
I do not want to sound harsh about this but I have seen too many people be mentally unprepared and it really overwhelms them. FIND a working local support group if you can and keep this Hep C Community handy at all times..... we all want the same thing.... health and happiness!
Blessings to you!
Thank you for your respond. I pray I only have to do 24 weeks. I got this 38 years ago from a blood transfusion while. Never had any side effects. Found uot from blood test when I went to Dr. for a sinus problem. Perfectly healthy and immediately went mentally downhill.
i have anxiety really bad due to hep c... its no fun... i hyperventalate easy... but i always still try to stay positive and look forward,,, its a very hard disease....i dont drink i dont smoke... but i just want my side to stop aching at times...
I do not smoke or drink either. I have only had this anxiety one time before. Guess I have a hard time dealing with the unknown. I am taking an anxiety drug, low dose, as I never take anything but I am still shakey. Thanks again for all your responses.
my dr rx me xanax... it really helps me alot.. i think the unknown is a fear in general for this disease..if i get sick its a natural thing i always think its my liver... thats like a mental block... i try to overcome it but sometimes its easier said then done.... but most peopl what i read have it and dont know and livethere whole life out...iam sure there are plenty of people that no way then me on here...that can help u in this matter...
You start treatment in four days? That means 29 Sep 2012 (this Friday) is your treatment start date :) :)
Not knowing what to expect and fearing the worst is enough to provoke anxiety and wake up shaking!!
Grrr. This makes me a little angry at your doctor for not preparing you better. Of course we share of half the responsibility to learn about the virus and what treatment will be like. If anything, so we can recognize side effects and do something about them before they spiral.
1. Not sure how long you have been on your AD (antidepressant) but it takes a while to be regulated on them t where they "kick in"
2. It seems like knowledge might be one of the best things to allay your anxiety. Do you go in to your doctor's office for training the day you take your first shot? If so be sure to ask for a contact number of who you call if (or when) you might begin to feel badly. Ditto with who will send your lab reports.
3. Don't just rely on vague comments they give you about your progress. You will want every scrap of paper related to your medical condition. That way you can post and solicit opinions
I can't tell which meds you will be taking. Has the specialty pharmacy sent them to your house yet?
Maybe you can post with more info later so we can address specific side effects ou might have :)
If you are experiencing such anxiety and panic attacks you should not be starting treatment until all of your mental issues are well managed. You should talk to your gastroenterologist about this and see a psychiatrist for your anxiety and get your mental health issues managed first. Treating now could cause you to stop treatment because of side effects and you may become resistant to treatment with triple therapy for some time.
Anxiety is not usually the result of the virus but of the way you are managing the knowledge of having hepatitis C. The vast majority of people have no symptoms at all from hepatitis C until they have servere liver disease. That is why most people in the US that are infected aren't aware that they are infected.
Viral load has nothing to do with symptoms a person might have. Liver disease can cause symptoms of liver disease after 20-40 of being chronically infected when a person has decompensated cirrhosis. By the way anxiety is not a symptoms of liver disease.
Talk to your hepatitis C treating doctor. He/she should know enough about treatment of hepatitis C not to treat anyone with such mental health problems, as treatment drugs can make these issues more severe.
"Help for Anxiety and Depression
If you are considering HCV treatment, tell your healthcare provider if you have a current or past history of depression or psychiatric illness. It is especially important to report severe depression, hospitalization
for any psychiatric illness, or any suicide attempts. "
Out of my personal experience, I think fall/winter is a good time to start this treatment. Interferon and Incivek both generate lot of heat, I had hardtime in texas summers with this treatment. I felt terrible wheever a/c stopped at home on weekends.
I too got it out of blood transfusion and found it accidentally during a routine physical. You need liver biopsy results before starting the treatment so that you can take a decision to continue or not if going gets tough. Just viral load alone will not help later.
My VL was pretty low-7500 and I wasa stage 0, gr.3-my hep said my side effects were'significant'. I felt like cr@p. I got my HCV from 1979 blood transfusion. VL and liver damage doesnt impact side effects-it is luck of the draw. Read as much info as you can-this forum is a great start.
I have had a liver biobsy and it showed minimal damage. I live a real healthy life. Don't drink or smoke. Never did drugs, and I have to be really sick to take medication. I think that saved my liver. Thank you again everybody for input. My meds are already here and I will have the nurse give me the first shot. She seems really great. Do you still have to have 20g of fat when you stop the incevek?
If you have minimal damage and are having anxiety attacks, you should seriously consider delaying treatment.
You do not have to do this now.
In fact, with the new all oral interferon free meds doing so well in clinical trials, I'd advise anyone with minimal liver damage to wait. This new treatment should be approved within a few years for the general populace.
Certainly your life style has helped your liver but there are many who have had a similar life style and still suffer from liver damage. It's not always as logical as we'd like it to be,
Don't know what type of anti-anxiety med your doctor prescribed but as info, concomitant use of alprazolam (brand name Xanax) and Incivek increases exposure to alprazolam. Clinical monitoring is warrented. I think this applies to all benzodiazepines so you have to be careful about the dosage because the Incivek will cause the benzodiazepine to have a greater effect on the body.
To answer your question, no, you don't have to consume 20 grams of fat after stopping the Incivek but it is very important you take each dose of Incivek with at least 20 grams of fat because it increases the efficacy of the drug by about 200 percent. Ribavirin absorption is increased by adding a little more fat when taking it but you don't need 20 grams of fat with each dose like you will with Incivek.
I am on the lowest dose of tranzine . 3 x a day. I think the anxiety is the fear of severe side effects and the change in my normal schedule. Up at 6 and in bed by 11. I have no appetite at 6am. I am going to give it my best. Just stocked the pantry. Evenings are good I only seem to have a problem in the morning.
Wow Tranxene is an oldie but goodie. If it is not managing your anxiety then unfortunately I agree with the others in that you might want to reevaluate your plans or be sure to have a Plan B.
One other thing that Corragio mentions in his post is the possible interaction of Teleprevir and drugs in in the benzodiazepine class (or derivatives). Telaprevir can increase blood levels of certain benzodiazepines, potentially increasing your risk for side effects. So, just to be on the safe side BE sure to ask about possible dose adjustments or timing you take your meds.
When you go on Friday ask about what to do if:
1) You notice the beginning of a rash.
☞ Not everyone gets is with Incivek but if by chance you do, you are going to want a topical steroid and an antihistamine.
2) You feel nausea or nauseous all the time.
☞ Again, this doesn't happen to everyone but it is the kind of nausea that rarely subsides with over-the-counter medications.
3) The 'runs' or loose stool.
☞ over the counter anti-diarrhoea meds helped me.
Being anxious and scared is understandable. I treated before so I thought I knew what to expect. Incivek was a real game changer and the entire treatment experience was different this time. I did start to get a little scared and freaked when week 4 or 5 of Incivek rolled around and the reality set in.
If I did not have this web site I am not sure how will I would have made it through the Incivek stage.
Be sure to check in and post. Sometimes the more involved you are the more surmountable this all seems. You see all of us felt the way you describe at first.
Well, I was 49 yrs old, and had the advantage of always having had general good health, because I have practiced a healthy life style, whichmeans, a healthy diet, exercise, and no hard-drugs, pills or alcohol.
That being said, I had a fairly easy time, with a 28 week Treatment with
the PI, Victrelis. I did have pretty much ALL the side effects, but I was able to deal with them, and it's good to go to your doctor (and come here to describe the side effect as well) as soon as the specific problem crops up.
For instance, a week after I started the third med, (Victrlelis) I began to have dry mouth/stinky teeth (sensitive to smells from the med, lol) so I found this great mouth-wash (via this forum) that had tea-tree oil in it, and I discovered chexing gum with Xylitol helped with the dry mouth, bad breathproblem, as well. I also went to thre dentist, to make sure I had no cavities, and for a teeth cleaning, prior to Treatment.
Then, I went out in the sun, when it first got hot in April, and I got a Riba-rash, which I treated, with a prescription anti-itch pill (Atarax), and it cleared up in about 6 weeks.
I also got hemolytic anemia, (meaning my hemoglobin got low, making me tired) and I immediately treated it with a rescue drug, Procrit, which was effective.
The meds also caused anxiety in me, which I treated, by cooking(and eating) a well balanced meal, and then going for a short walk.
I made sure to be organized (I set a timer on my two cell phones, to go off every 8 hrs, to remind me to take my meds.) and I came on this Forum daily, for support, and I went to a real life Support Group once a week. Because very few people understood what I was going thru, so I needed to be around people who understood.
Hopefully, by you being educated and well-organized, some of your anxiety may be put to rest. All of us on this Forun will be here for you :)
I am 60 and also in good health untill today when my dog accidently knocked me down and have a sprained ankle. What next??? My anxiety is in the morning and I haven't started the meds yet. I am sooo scared of failing. Thank you for responding and caring. I live in a place where there are no support groups
Wow sorry about your dog. One of mine weighs 130 and the other weighs 90. I have more than my share of injuries from accidents and mishaps. I am not sure about you but I can safely say my dogs are a tremendous source of comfort for me while treating. We usually walked 2- 3 miles every day and there was just no way I could do that with the Incivek. We are finally back on track and they are so happy.
You really need the contact number of someone to call in case you fall or get sick. Further, it helps to have someone wonder what is going on with you if they do not hear from you for a day or two (or whatever time designation you choose).
Yeah, a week before I went into Treatment, I dislocated my sternum/clavicle joint, it just popped out, and is still jutting out.
I hope your ankle is healed, befor you start tx, becuz the Interferon may make healing slower, I dont know.
I sometimes felt like the Interferon helped with healing though, and I didn't hesitate to start the Tx, even with my injury.
I also got these big, dark circles under my eyes,once I began my "getting into Treatment mission". it is totally natural for anyone to have anxiety, while under-going this Tx...and I am generally really laid back, and easy going~
I had 17 million VL and didn't know I had hep c 40 yrs, no liver damage. Since I was in good health, it was a good time to get it over with. I'm now SVR and turned 60 yesterday. As you get older other things might get in the way of treatment. Also insurance, your personal situation at home all factor in. It was awful. Worse for me since I was in tx before so I had some idea what was in store. Best way is to just jump in and take it one day at a time. I was able to work all but 3 weeks of treatment, fulltime. I had great medical care which makes a huge difference. General docs should not be treating hep c with these new drugs. Lots of great information to research since many have treated the past 1+ years.
Hi pcds! You were very lucky or God took care of you for you to not have Liver damage after having HepC for 40yrs...Wow! You are the only one I know of that ..Congrats! I am shocked that HepC didn't do any damage..Unbelievable!!!
was on my first full dose of all 3 meds yesterday. I was fine untill about 8pm. the migraine set in. Worst headache I have ever had. During okay today, just feel tired and like someone git me in the head. Does that happen after every shot ? Do they give you anything for that. Mine was so bad I was up vomiting 3 am. Can't do that weekly.
This may sound silly, but do you have a dog? I rescued one the week before I started and he and I are best friends. I'm so content with him that I can't imagine life without him now. My husband is jealous! Just kidding, he thinks it's great that Fred has helped me so much. You might try a lap dog as they are very comforting and provide great therapy.
For headaches, you can take aspirin as long as your platelets are 100 or above.
You can also take tylenol.
A cool damp cloth for compresses can help as well.
Most people do their weekly interferon shot in the evening, so as to sleep through most the side effects.
countrygirl: Not everyone who has hep C will develop liver problems. We've seen more than one person over 60 here who had no or minimal damage.
This virus does not conform to what we think of as logic.
For some, it can kill, for others, it does no damage.
Thank you. I thought Tylenol but my nurse said to try not to take anything if I could. This was the worst headache I am assuming it was from the shot, but I also started out with all 3 meds in one day.That would have to have some effect.
I didn't do the triple treatment.
My nurse told me to do the interferon shot before bed and take tylenol to help counteract the effects.
Usually the first shot is the biggest shock.
Generally side effects come and go.
The best advice I can offer is to drink lots and lots of water, keep exercising, walking is fine, take it one day at a time, and keep your eye on the finish line.
Think of treatment as a roller coaster ride. SIde effects ebb and flow.
I can't say what it will be like for you, whether things will get better or worse, we all respond differently but generally the first shot is the most intense.
Keep hydrated, you can not drink too much water and it does help with side effects even if it means more trips to the toilet.
Tonight is my second shot. praying for no migraine. Finished first week yesterday and been working part time. Yesterday I was exhausted and went to bed at 7. 11 more weeks to go on incivic hopefully. I WILL MAKE IT!!!
Yes the 20 grams was hard for me too, especially when you are not hungry or nauseated. Odansetron (Zofran) is good for the nausea and helped me get through it.
I tried flaxseed oil and coconut oil as the amount you need to take is minimal but they ended going right through me and exacerbating the "loose stools"
The morning dose was the hardest to get the fat and the last few weeks I ended up on hot dogs washed down with whole milk. Yum!
Exercise definitely makes things better although I hate walking because of the arthritic type pain in my hip joints and fibromyalgia pain in my leg muscles. I found that an eliptical machine and lifting weights worked and helped me gain muscle mass. Made the fibromyalgia much better too.
I think most of us thought (or dreamed) about stopping, but know that you can do this! I never thought about the whole 12 weeks and instead concentrated on getting through the day and sometimes just getting through the hour or even minute.
Glad the shots got better for you and keep comig back!
I think the shakiness is probably just part of the overall weakness and tiredness (cold/flu like symptoms) that the interferon causes. Be sure to drink LOTS of water. Good luck, hope you feel better by tomorrow.
everyone seems to have their own way of getting enough fat in...i did ice cream at first then went to butter....butter on blueberry pancakes...butter on anything i could get down....i also used zofran...i would go into gagging sessions lots of days and zofran worked for me...its so important that you take fat with your incivek...don't miss a dose...if work gets in the way of tx i would find a way to stop work...when on tx every day seems to go by slowly but before you know it the incivek will be over and mentally tx will be way easier...still no picnic...i went up to 150 zoloft on tx..maybe too much......that was a lot but i did do well mentally on tx...i also had lots of help....hang in there...get cbcs done at least once a week....ask questions here.....good luck....billy
Complete Blood Count Also known as: CBC; Hemogram; CBC with Differential
Formal name: Complete Blood Count
Related tests: Blood Smear; Hemoglobin; Hematocrit; Red Blood Cell (RBC) Count; White Blood Cell (WBC) Count; White Blood Cell Differential Count; Platelet Count , Reticulocyte Count
How is it used?
The complete blood count (CBC) is often used as a broad screening test to determine an individual's general health status. It can be used to:
Screen for a wide range of conditions and diseases
Help diagnose various conditions, such as anemia, infection, inflammation, bleeding disorder or leukemia, to name just a few
Monitor the condition and/or effectiveness of treatment after a diagnosis is established
Monitor treatment that is known to affect blood cells, such as chemotherapy or radiation therapy
A CBC is a panel of tests that evaluates the three types of cells that circulate in the blood and includes the following:
Evaluation of white blood cells, the cells that are part of the body's defense system against infections and cancer and also play a role in allergies and inflammation:
White blood cell (WBC) count is a count of the total number of white blood cells in a person's sample of blood.
White blood cell differential may or may not be included as part of the panel of tests. It identifies and counts the number of the various types of white blood cells present. The five types include neutrophils, lymphocytes, monocytes, eosinophils, and basophils.
Evaluation of red blood cells, the cells that transport oxygen throughout the body:
Red blood cell (RBC) count is a count of the actual number of red blood cells in a person's sample of blood.
Hemoglobin measures the amount of the oxygen-carrying protein in the blood.
Hematocrit measures the percentage of a person's blood that consists of red blood cells.
Red blood cell indices are calculations that provide information on the physical characteristics of the RBCs:
Mean corpuscular volume (MCV) is a measurement of the average size of RBCs.
Mean corpuscular hemoglobin (MCH) is a calculation of the average amount of oxygen-carrying hemoglobin inside a red blood cell.
Mean corpuscular hemoglobin concentration (MCHC) is a calculation of the average percentage of hemoglobin inside a red cell.
Red cell distribution width (RDW), which may be included in a CBC, is a calculation of the variation in the size of RBCs.
The CBC may also include reticulocyte count, which is a measurement of the absolute count or percentage of young red blood cells in blood.
Evaluation of platelets, cell fragments that are vital for normal blood clotting:
The platelet count is the number of platelets in a person's sample of blood.
Mean platelet volume (MPV) may be reported with a CBC. It is a calculation of the average size of platelets.
Platelet distribution width (PDW) may also be reported with a CBC. It is a measurement of the variation of platelet size.
When is it ordered?
The CBC is a very common test. Many people have a CBC performed when they have a routine health examination. If a person is healthy and has results that are within normal limits, then he or she may not require another CBC until their health status changes or until their doctor feels that it is necessary.
A CBC may be ordered when a person has any number of signs and symptoms that may be related to disorders that affect blood cells. When an individual has fatigue or weakness or has an infection, inflammation, bruising, or bleeding, a doctor may order a CBC to help diagnose the cause and/or determine its severity.
When a person has been diagnosed with a disease known to affect blood cells, a CBC will often be ordered on a regular basis to monitor their condition. Likewise, if someone is receiving treatment for a blood-related disorder, then a CBC may be performed frequently to determine if the treatment is effective.
Some therapies, such as chemotherapy, can affect bone marrow production of cells. Some medications can decrease WBC counts overall. A CBC may be ordered on a regular basis to monitor these drug treatments.
Thanks so much for all that info. Today was finally a decent day with minimal shakes and little nausea. I am seeing what you mean about the roller coaster ride. It took 3 days for me to feel better after the shot. Thank you again! you are all an amazing help.
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.
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.
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.
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
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.
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.
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!
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.
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!
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?
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.
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!
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
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.
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.
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
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.
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.
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!!!
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.
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!
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.
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.
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
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.
Vertex did a trial with an 8 week incivek/telaprevir arm here are the results
18.104.22.168 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.
22.214.171.124 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.
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.
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.
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.
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
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.
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!
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!
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.
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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