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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
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!
Avatar universal
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.
179856 tn?1333550962
Unfortunately viral load and low liver damage means nothing when it comes to side effects. Some people get them badly others dont get hardly any at all.

You should talk to your doctor about getting your anxiety under control. Treatment isn't any fun but for most it is doable. Just remember it has an end date and then it is done!  :)
Avatar universal
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...
Avatar universal
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.
163305 tn?1333672171
To help with anxiety you might consider meditation.
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Meditation.pdf#search=%22meditation%22
Avatar universal
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...
Avatar universal
awesome message to shocked 60
766573 tn?1365170066
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 :)
446474 tn?1446351282
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. "

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Treatment_Side_effect_Guide.pdf


Good luck!
Hector

Avatar universal
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.
Avatar universal
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.
Avatar universal
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?
163305 tn?1333672171
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,

Avatar universal
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.
Avatar universal
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.
Avatar universal
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.
Avatar universal
If you have minimum liver damage may be you can consider starting little later with a better drug (like orphanedhawk said), as far as I have seen interferon and riba increased anxiety for me.

I am not an expert but I was told that once we start incivek and stop, we cannot be prescribed the same medicine again.
766573 tn?1365170066
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.

http://www.drugs.com/drug-interactions/clorazepate-with-telaprevir-706-0-3328-0.html

_____________________
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.

Best of luck ♫
Avatar universal
thank you so much for your input.
Avatar universal
  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 :)
Avatar universal
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
766573 tn?1365170066
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).
Avatar universal
  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~
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