Hep C Discussion Forum

Hi everyone!

I am a 29 year old man living in the UK and in September 2012 I was diagnosed with both Hep C (1a) and HIV, both contracted from my previous partner.  To hear such shocking news was an understatement, when the health adviser told me about my diagnosis, I just homed in the words HIV, the Hep C went out the window. It wasn't until sometime after I began to research what this infection was and what did to your liver and body.

I had a liver biospy in January 2012 which confirmed inflammation but no scaring. (I can't be sure, but its likely that I had hep c and hiv for about 16 months prior to being diagnosed.) My hep c treatment was initially delayed as my HIV viral load was pretty high, I was put onto Truvada and Isntress, those drugs being the safest on my liver in March 2012. My HIV consultant wanted at least 6 months of an undectable HIV load before they considered hep c treatment. I was also initially pretty scared which also delayed treatment. I read alot on the internet about the various side effects and how ill people felt going through treatment.

Finally, in mid December 2012, I started on Rebetol (Ribavirin) and Pegintron (Peginterferon alfa-2b) and I had a 6 week led in, I can't remember why this happened. After 6 weeks on standard treatment my HCV viral load had gone down 1 log  from 10x6 to 10x5. This was obviously disappointing as I had hoped that I woudn't have to start triple therapy. The first 3 weeks of standard treatment were pretty tough and it took that long for my body to adjust to the toxic drugs I was putting into it. I'm glad this happend over Christmas as it gave me time to rest and recover before going back to work in early January. 

At week 6, I was told by my clinical nurse specialist that I needed to start triple therapy and I  would be taking Boceprevir, which less side effects than Telaprevir but for a duration of 44 weeks as opposed to 12 weeks!! Almost at the end of January 2013,  I started on Victrelis (Boceprevir). The first five weeks of triple therapy were extremely tough , so much so, I didn't once manage to get to the gym! (I had been going about 3/4 times a week where possible on treatment and previously 5 times a week before starting treatment.)

Since week 8, (2 weeks into triple therapy) my HCV viral load has been undectable and has remained so,  as I approach week 24. My CD4 count has dropped but is now stable and my haemoglobin has dropped from 14g/L to 11g/L and is also remainig stable. The rest of my blood work is pretty good and remaining stable. My liver function tests levels are returning to baseline levels after being very high for most of 2012.

At the half way point, I think I have done pretty well, I have even had planned minor surgery 2 weeks ago, something I was anxious about as I know that my white blood cells had dropped, but were still very good. Initially I suffered with aching joints, a weird metatillic taste in my mouth, extremely bad fatigue, flu like symptoms, chills, aches, fever when taking the interferon. As time has gone on, I don't think I'm feeling much side effects from the ribavirin and interferon. On Friday night, I took my interferon shoot at 10pm as I usually do, downed a couple of paracetmol and went to bed. The next morning I was up and functioned normally, it was like I hadn't taken it. The day after, I did sleep a fair bit, but only as it was Sunday and I could, usually I go to the gym on sunday and start the week all over again on Monday, ready for work.

The most annoying thing about the Victrelis if the dehydration it causes, the constant dry eyes and the weird taste in your mouth, its different to the metallic ribavirin taste I experienced in the first  4 weeks, the mouth ulcers and digestive problems, namely trapped wind (although this could be porridge I eat) and hard stools. The nurse told me that I would lose weight and I was looking forward to shedding body fat and seeing more defined abs!!! I know I know vain, but I have strugged with my abs! My weight has steadily increased from 73kg to 78kg over the course of the treatment!! But I am trying to do as much cardio when I can to keep the love handles down, I guess its all the extra food I have to eat with the Victrelis.

I wanted to ask others on triple therapy, does it get easier going through treatment. Over the last 24 weeks, I would say in my opinion yes. I have gone to work everyday since I started hep c treatment and I haven't taken one day off.  I find that paracetamol and plenty of fluids help manage the interferon side effects and I been prescribed eye drops, medicated mouthwash, stool softners and trapped wind remedies to mediate the other side effects.

Although I don't feel great sometimes, I feel that this isn't as bad as some the literature and information a makes out, but as I have been told a lot, everybody is different and experiences different side effects on treatment. All I can say, is that I was a very healthy strong individual  before been diagnosed and I have kept up a healthy lifestyle of good food and exercise, which I think has made things easier on treatment.

Anyways, that's enough about me. If there is anyone new reading my post and anxious about starting triple therapy, my advice is:

• try not to read too much into side effects, the more think about them,  the more they will manifest themselves;
• don't get hung up about compare yourselves to others, we are different and will experience different side effects;
• set reminders to take your pills, I am on 20 tablets a day, so I have reminders in my calendar on my iphone and download a drug reminder app with handy sound effects. I am pretty strict on adherence and would recommend sticking to a good regime with your tablets. Even with all these reminders, I  have been about 2-4 hours late with a couple of tablets so far;
• keep a log of your treatment and cross out the weeks you have gone through, highlighting weeks off the calendar, just shows visually how far you've come! I am half way through my treatment and when I first started, 48 weeks seemed like a lifetime;
• try and maintain a balanced diet and exercise if you can - I find weights in the gym and light cardio really helps mentally, yes I can't lift the weights I once did and I have lost muscle mass, but I have adapted to lighter weights and leaner muscle;
• it's okay to pig out when you feel down after interferon, if eating fatty unhealthy foods, makes you feel better, do it;
• try and live as normal a lifestyle as you did before, yes you will probably be fatigued a far bit, but try and do things that make you happy, exercise, go out for food, buy new clothes, go to the movies/, socialise with friends, read, listen to music, walk the dog or whatever you feel like doing, etc.
• its okay to feel like ****, for a long while I was angry that I felt awful and tired all the time. After a while I just went with it and I the times I feel like **** are getting less and less, I don't know if that anything to do with my subconscious or not, but things have got easier.

I am really glad I found this forum as it really good to see people offering advice and motivating each other whilst going through treatment. I have found it very hard as I don't know anyone who is co-infected and going through triple therapy. It's sometimes hard to talk to people who don't have hep c as they don't understand what it feels like to experience the side effects and have the stigma attached.

Thanks for reading my story and I hope it helps others! I look forward to getting to know people on here and helping others get through treatment.

Cheers

Lee

(I apologise in advance for my grammar and spelling, its almost 6am )

-- Edited by LFN_84 on Tuesday 28th of May 2013 06:16:23 AM