I am in my fourth week of Hep C triple therapy.I am grade 1 and stage 1 and my viral load started out as 2,481,183.
My Hemo started at 14 but is now 11. The Dr. lowered my Rib by 200mgs. That was discouraging because I think it might affect my success rate? First CBC blood work was taken two weeks ago.
I know I am a newbie but I have a couple of questions. Does anybody know, are most people able to work on treatment? I feel terribly sick, having many side effects and now I seem to be developing anxiety. So, just wondering how others are managing or have managed? I don't want to be a big cry baby but I would like to be dealing real way with my symptoms.
Greetings and welcome to the forum :)
You are not a cry baby and no one on here will think you are one. These are heavy duty drugs and everyone responds differently. It would help if you posted your genotype and which meds you are taking since the medication protocol varies by Genotype. Genotypes 1a & 1b typically take three drugs (triple therapy) while other genotypes tend to take two (dual therapy).
Some people can work. Some make arrangements so they do not have to work during treatment. I was able to work the first time I treated yet I was very glad I did not have to work the second time I treated. I would not have been able to focus very well.
I am Genotype 1 but not sure if I am "a" or "b"? I am on triple therapy ( interferon, rib and Incivik). I think before I started I thought I could just tough it out at work but now I am stressing about having the energy to go.
I am so sorry for what you are going through. Do you know how many weeks you are treating? 24?..48? Many take their shots on Friday after work in the hope that by Monday or Tuesday they can go back to work.
Can you go on short term disability?
There are people on here who were able to work however I do not think I could have worked, at least for the first 12 weeks.
Believe me no one will think you are a cry baby. The 3 drugs are very hard on the body and mind. Many people take antidepressants and anti anxiety medication.
Like IDyllic the first time I treated with Inf and Riba I was able to work. This second time was a deal changer for me.
I wish you all the best. More people will chime in soon
I just got some anti anxiety meds today but I feel very depressed and am not sure if it's caused by the drugs or if it's situational? I can look into short term disability, not sure if that's possible? I can say after my short 4 weeks that this is a very isolating treatment and I thank god for this forum. I am sure it will save me. My Dr. wants me to do the triple therapy for 3 months then just the interferon and Rib for an additional 3 months.Perhaps I think I need to think about how I feel from day to day rather than think, "I can't feel like this for 6 months." If I focus long term it's too hard. Hope that makes sense?
Everything you are saying makes sense. I finished 48 weeks treatment in December. The first three months (12 weeks) you take Incivek with the Peg and Riba, Then based on how you are responding (what your viral load is) you treat another 24 weeks or possibly longer. We won't know how long you treat until you have your four week labs.
There are other threads related to treatment duration but at current I am concerned your doctor may not have prepared you what to expect. Incivek is different for everyone. It made me very sick in the beginning but then I was OK. Some people get a really bad rash or they get this kind of burning in the rear area every time they go ... #2. It sounds like you have been spared those side effects so far so double yay.
To answer your immediate question I would say that it helps to have a Plan B to fall back on in case you have bad days. Some people arrange this prior to treatment since it takes time to orchestrate sick leave, disability, Family leave, time off and all that. I encourage you to at least find out what is available on that front so you are not caught unawares.
Depression is associated with Interferon but in my opinion Incivek comes with its share of effects. I treated before and I can say without doubt Incivek changed the whole treatment experience. I struggled with apathy, anorexia, inertia and it freaked me out not looking forward to doing things I enjoy. That is me but trust me, many people who treated with Incivek will share they immediately felt better emotionally within days of being off Incivek. There are threads related to this topic as well. I am glad you listened to your instincts and found something to help with anxiety.
I will look around and try to find some helpful links for you to read meanwhile I hope others post since you are not alone and there is a lot of support on here.
Good advice Idyllic. I worked the whole time, but it was tough. A lot of this IS the mental game. I hope the anxiety meds help. It may take a few weeks for them to get in your system. If it helps, just remind yourself that it IS the medication that is known to create anxiety and depression. By all means talk about it. Don't hold it all in.
I think you're smart to look at the situational aspect. Life gets hard while treating and you feel like everything is beyond your control. Just focus on taking care of yourself. Then you can unravel all the other stuff when tx is over.
In the meantime, hang in there. You have found an excellent forum for support. You are not alone in this.
First of all I'm glad you found this forum. It helped me get through my 24 weeks of treatment. I also did triple with peg, ribavirin and as someone else coined it Incideous Incivek. You are at about the point when the anxiety and all consuming blahs hit. I got to this point around 5 weeks. I remember crying to my husband that I didn't think I could do it. I got an anti depressant and though I still felt crappy I was able to take it one day at a time. After you finish the Incivek you'll probably feel better. I know i did. This is a very tough treatment and everyone reacts differently. My advise is to stay on top of the side effects. As soon as they rear their ugly heads try to find a solution. Check in on the forum whenever you feel the need. No question is too small. I finished my 24 weeks on April 11th and I'm feeling better everyday. Good luck!
Triple is not easy, I had lots of couch days during the Incivek time and hardly could work more than 2 days per week in the office. Luckily had the Xmas holidays and start of the year was not very busy so was able to work a lot from home on helpdesk . Probably more difficult if you have a job where you need to stand all day. I couldn;t have done it probably
I am now in week 25 and I feel like flying (and by the way my hemoglobin now is more or less stable around10.6). I am picking up fitness wise and work everyday. Lucky again I can do one day from home so that helps. I am having quite a few very late nights infront of PC working. But no sickness, no vivid dreams anymore, no apathy.
I think depression is a mental state which can be changed and I manage my anxiety by comunicating with the doctors and having copies of all the blood tests. This is giving me a feeling of control and it calms me. I was apathic when doing the Incivek but now is not even a memory anymore. I am starting in couple of weeks an evening acting class, so that will be fun. Again, I was not able to do that during Incivek time, way to tired.
I managed the sickness by cutting the starches, carbs, sugars. It made a huge difference. It made it bearable
Not sure why your doctor lowered Riba at 11. Is not a bad value. I had my dose lowered for one week when I went down to 8.8 after having a few weeks of 9.7-9.8.
Not to be nosy but do you have a desk job or a hard labor job? That is the big question. Some people can work some can't. I work in a restaurant and is fast pace. For me I couldn't work the first 12 wks while on incviek. These meds are pretty harsh on your body. I am on my 23 wk today and still to this day I am a bit fatigued. But I do feel better since I am off of incviek.
As you can see a lot of different people have a lot of different experiences. This coming Saturday will be my last Ribiviran dose so EOT for me. I went 48 weeks on triple therapy and I'm ready for a break. I thought the roughest days were the first 12 with the Incivek and all that fat you have to eat. I commute an hour each way to work, I close my office door at lunch and try to get a 20 minute snooze, but not everyone can do that. For me the side effects weren't terrible. I hope your system can build up a tolerance to the severity of the sides and you hang in there. At the end of the day, after my 25 years with Hep C I feel like this therapy is a miracle. Definately take advantage of anxiety meds if you feel the need.
Hey there, I just wanted to come back to say that every day will be different. when my hemo dropped from 14 to under 9 I felt I could not breath my feet went numb. My doctor told me it was all from the the medication.
All I could do was hang on to those words. This is the medications.
As others have said we are all different, though it is true that at about 5 weeks the riba will have built up in your system and can add to the bad feeling.
Try to trust your doctor, he probably has experience now with the Incivek added to the Inf and Riba.
The Incivek did change the tx quite a bit.
While I treated I tried to just get to the 12th week. Once I got there I tried to make it to the 24th.
Looking at it all at once is overwhelming. I am sure you know this but try to drink as much water as you can. The inf is very dehydrating alone but with Incivek even more so and that can add to bad feelings
Everyone is here for you, if you have any questions everyone will try to help you as much as they are able. Especially with the side effects.
Good luck to you, keep in touch
Hello everyone and thanks for all the wonderful information and encouragement. You all have brought tears to my eyes. I've been feeling so alone. You are such a help to me. My job is pretty high visibility but I have a very supportive staff. They don't know what is wrong with me specifically. I am going to try to go back to work tomorrow. I am trying to figure what to tell my co-workers is wrong with me. How have you guys dealt with that issue? I hope to god I can work, it takes my mind of my side effects.
Hi and welcome to the forum. You are certainly not a cry baby. These meds make you want to either cry or scream on some days.
I just finished with the Incivik and while there were weeks that felt overwhelming there were also weeks that were good. I struggled a bit with anxiety and kept my emergency Xanax in my purse which gave me almost a security blanket. I knew it was there and when I started feeling anxious I would tell myself don't worry you have meds. It really was a mindgame for me and continues to be one. I have worked everyday but I will tell you there were times I couldn't get out of bed in the morning and had to force myself out the door but I was afraid that staying home by myself would feel worse. I took short naps at work or just closed my eyes.
Everyone is different and handles it differently. The third week was my worst. I thought I am not going to get through this but I posted, got encouragement and moved forward. I did and continue to drink tons of water and I think that helped.. I tried to focus on other things other then the meds and when I was really busy it also helped. You must take care of yourself and do this in stages, it makes it easier.
There are folks here who have finished, are in the middle and like you are at the beginning so there is a lot of help here. Keep in mind that the Incivik will end soon and for me after I got through the six days after Incivik I feel really good.
Someone already asked if you could make arrangements at work to go part-time or out on disability if you need to. I was already working every Monday at home so that gave me 3 days to rest and that helped a lot.
Hang in there! You can do this one day at a time or 1 hour at a time or 15 mins. at a time.
My experience has been not to tell anyone at work at all. People that aren't experiencing what we're experiencing don't seem as understanding. You may want to find a close friend or two and confide in them for those "anxious" days. I was lucky, I didn't have any debilitating side effects. There were two incidents I had where I raged just a tad and put someone in their place at work, but that worked out for the best. I would never have done that if I wasn't on treatment. Unfortunately in my private life I hurt someones feeling pretty bad once while raging and I broke down and apologized and told them what was going on.
I agree with 48weeks, I learned the hard way. I told on person that I thought I could trust and my GM and within days everyone knew what I had. It brought me to tears and I had to leave work. Not everyone is understanding to this. They don't understand nor are they educated on what hep c is and how you contract it. In the end everyone at my work is now SOMEWHAT understanding about it. I tell people its like going through chemo therapy. Some understand some are like oh okay. But everyone on here are here for you no matter what. The ups the downs, the good and the bad. We have all been threw it and will help you out through these times.
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