Aa
All alone
I hope you all on this site can help me through this tx. I am on Peg-interferon/Ribavirin and Victrelis, this is the sixth week in starting on Friday night. This was the sixth interferon injection and I have not yet heard about my blood work. They took 10 days to get the results but there was not enough blood drawn as my veins are very small and any good ones are damaged. I have developed depressions and anxiety, sleeplessness, agitation and completely lack any energy or desire to even cook meals for myself never mind my family. I hope that someone here can help me through this tx, if for nothing else but support from someone who has been through or is going through tx now. I feel so alone and hopeless. Thanks in advance.
Hi Cherie, and welcome to the forum! You are really doing a great job by getting going on this treatment and by doing enough research to find this forum. It has been a lifesaver to many, with many generous and knowledgable members coming on to help with different areas. I'm not an expert on the treatment with Victrelis, but have plenty of experience with the other meds. I'm 59 and probably contracted the virus (genotype 1a) from a blood transfusion in 1984. I've treated it three times over the years. In 1994 it was with just interferon, which was an utter failure. In 2005 my liver disease had already progressed to cirrhosis and I treated again, this time with interferon and ribavirin for an absurdly long time: about 15 months. I did become UND but relapsed very quickly. My most recent treatment was triple tx with Incivek, 48 weeks of tx that ended in Sept 2012. Last month I learned I'm SVR, so the virus is finally really gone. It is a wonderful feeling!
On the other hand, tx was very hard. I'd do it again if I had to because it really is worth it, but that doesn't diminish how hard it was to do. Keep on posting regularly, preferably on the main Hep C community when it is about the virus, the tx or the side effects, as most of us check that forum more frequently than the social forum). You will find help here with almost any problem, and especially support. While I was treating I had all these different side effects: itching, rash, nausea, diarrhea, mouth sores, painful cracks at mouth corners, hair loss, insomnia, fatigue, anemia, low platelets and bruising, low white blood cells, interferon-induced asthma and towards the end I also had interferon-induced restless leg syndrome. I was able to get very good advice on almost all of those problems from the regular forum members, and thus was able to complete my tx.
The one piece of advice I can think of so far for you is to maybe check around with different labs on how long it takes to get the blood test results. It's so hard to have to wait a really long time, and if you develop severe anemia or something then you really want the results quickly so you can start additional meds to help alleviate that problem. It's really not good to have to wait a long time. Different labs have very different time frames, so it can really make a difference to switch. I was treated by a hepatologist at Stanford Hospital & Clinics, so I ended up getting my blood drawn there. The bulk if the results were back in somewhere between 6 and 24 hours. The slowest results were the HCV PCR (viral load) test, which took 3 to 4 days. As soon as my doctor got them he posted them on a password-protected web account for me to see them. Going there for all my blood draws was a real pain, especially when the numbers were dropping and I had to go once a week for a draw, as each trip involved a half hour drive each way plus 15 minutes and $6 to park. Most of my tx I was too sick to drive and my husband had to take family leave time off from work to drive me in. We both really felt it was worth it though, to get the results quickly. Outside labs in the area had time frames of 1 week for the quickest tests and took up to 3 weeks for the PCR test. Good luck with your tx anyway, and know you're not alone!
On the other hand, tx was very hard. I'd do it again if I had to because it really is worth it, but that doesn't diminish how hard it was to do. Keep on posting regularly, preferably on the main Hep C community when it is about the virus, the tx or the side effects, as most of us check that forum more frequently than the social forum). You will find help here with almost any problem, and especially support. While I was treating I had all these different side effects: itching, rash, nausea, diarrhea, mouth sores, painful cracks at mouth corners, hair loss, insomnia, fatigue, anemia, low platelets and bruising, low white blood cells, interferon-induced asthma and towards the end I also had interferon-induced restless leg syndrome. I was able to get very good advice on almost all of those problems from the regular forum members, and thus was able to complete my tx.
The one piece of advice I can think of so far for you is to maybe check around with different labs on how long it takes to get the blood test results. It's so hard to have to wait a really long time, and if you develop severe anemia or something then you really want the results quickly so you can start additional meds to help alleviate that problem. It's really not good to have to wait a long time. Different labs have very different time frames, so it can really make a difference to switch. I was treated by a hepatologist at Stanford Hospital & Clinics, so I ended up getting my blood drawn there. The bulk if the results were back in somewhere between 6 and 24 hours. The slowest results were the HCV PCR (viral load) test, which took 3 to 4 days. As soon as my doctor got them he posted them on a password-protected web account for me to see them. Going there for all my blood draws was a real pain, especially when the numbers were dropping and I had to go once a week for a draw, as each trip involved a half hour drive each way plus 15 minutes and $6 to park. Most of my tx I was too sick to drive and my husband had to take family leave time off from work to drive me in. We both really felt it was worth it though, to get the results quickly. Outside labs in the area had time frames of 1 week for the quickest tests and took up to 3 weeks for the PCR test. Good luck with your tx anyway, and know you're not alone!
I'm glad you're feeling better and getting some sleep. I agree there is a stigma to having hep c and I was very careful about what I disclosed to my friends. I didn't want some of my less enlightened friends to wonder if they'd ever drank from a glass I'd touched or taken a piece of gum I offered. Your health issues are a private matter and that's why there are laws like HIPAA. I've experienced the attitudes of health care workers changing when they found out I have hep C and was a former IV drug user.
I told most of my friends I was doing a new form of chemo for problems with my liver. The triple therapy is new, the treatment is with chemicals, and the purpose is to ward off liver cancer. I didn't want to outright lie, and I thought this was an accurate statement and as much as they needed to know. I disclosed on a "need to know" basis and most didn't need to know more than that. My friends in recovery and AA know the whole story because I know they understand and don't harbor the same judgements regarding hep c. Because of my background, I already feel like a pariah in a lot of social situations. I didn't want to add the hep c stigma to the load.
I told most of my friends I was doing a new form of chemo for problems with my liver. The triple therapy is new, the treatment is with chemicals, and the purpose is to ward off liver cancer. I didn't want to outright lie, and I thought this was an accurate statement and as much as they needed to know. I disclosed on a "need to know" basis and most didn't need to know more than that. My friends in recovery and AA know the whole story because I know they understand and don't harbor the same judgements regarding hep c. Because of my background, I already feel like a pariah in a lot of social situations. I didn't want to add the hep c stigma to the load.
Thanks so much for all of your kind words of wisdom from someone who has been through this tx before. I started Remeron recently and since it also acts as a sleep aid I have had the most amazing couple of nights of sleep. The insomnia was really going to kill me. I definitely am not even close to"back to normal" so to speak, but I am so much less anxious about tired. Everyone in this forum has been so absolutely amazing, I couldn't ask for a better bunch of people who understand the medicine and the craziness the tx causes us to feel. I wanted to say thank you for all of your kind words and support. I am truly so grateful that I found this site and all of my new favorite people!!! You understand the stigma involved with having HCV, I have been feeling so alone because I don't want to tell anyone I know, besides of course my family...so I am so happy to be able to speak so openly about it, this site has truly been a lifesaver! I hope you enjoy your day-and thank you for all of your support~Cherie~
Hi Willy! I am definitely feeling better today than I've felt in weeks. My Dr put me on Remeron and the best part is that it's also a great sleep aid. I have finally been able to sleep more than just 3-4 hrs, which I desperately needed. I was truly feeling like I was going to go insane!!! Also everyone including you here on this forum has been so amazing. I am so grateful for all of the support from everyone!!! I really just thought I'd update on the situation, and also thank you personally. Sometimes even just a few kind words and support can make all the difference in the world. Thanks so much for everything. I am so appreciative of it all :) ~ Cherie~
Just wanted to say hello to you! I am feeling a bit more like a human being again, I think that the Remeron is working already, thank God! I am still not by any means myself, but I am not feeling nearly as depressed as I have been. Really shocked that it's only taken not even a week now I do believe that the insomnia was really affecting my mood and since the AD is also a great sleep aid I must say that I am not nearly as bad off as I have been even just a few days ago. Thanks for all of the info and support. This site and all of my new favorite people on it has definitely helped as well!!! :) I just want to thank you for your time and understanding. It means the world to me!
Hi, I treated with Victrelis last year, and did manage to clear. I did suffer from anemia, meaning my hemoglobin got low, so it was hard for me to do my daily chores., I just focused on myself...I cant even remember cooking my family dinner, but I must've done it somehow. I used to take my morning pills with a yogurt, and then later ont ake myself out for eggs. I do remember feelong very alone, thru-out the Treatment also.
I used a bit of Medical Marajuana, for the depression and agitation, but only a puff or two, in the morning, around 9am. And I took my dog on a walk, two times a day. Other then that, I tried nibbling on appetizing snacks, because when my stomach got empty, I felt really weird. Hang in there, you will feel better once you get your recent labs back, I bet. Good luck~ Katy
I used a bit of Medical Marajuana, for the depression and agitation, but only a puff or two, in the morning, around 9am. And I took my dog on a walk, two times a day. Other then that, I tried nibbling on appetizing snacks, because when my stomach got empty, I felt really weird. Hang in there, you will feel better once you get your recent labs back, I bet. Good luck~ Katy
I have not treated with interferon but the symptoms you describe are fairly normal.
For many people the mental sides are worse than the physical sides.
It takes time to get PCR's back. Waiting is a drag, but while yours seem a little slow, they are probably along the lines or normal. These tests require many steps and each step takes time. Request your doctor call you or e-mail you when they come in.
You should also talk w/ your doctor about your sides. Some people need an antidepressant, some an anti-anxiety, for others a sleep aid. I am aware of some people who needed a stimulant so they can get moving and function. I don't recommend xanax since they are addictive but some people had one or two so that in an emergency they knew thay had an ace in the hole. You may just need a little help.
You may also be starting into anemia. That's a very different deal and an easy test.
Successful treating sometimes simply requires managing those pesky symptoms.
good luck.
willy
For many people the mental sides are worse than the physical sides.
It takes time to get PCR's back. Waiting is a drag, but while yours seem a little slow, they are probably along the lines or normal. These tests require many steps and each step takes time. Request your doctor call you or e-mail you when they come in.
You should also talk w/ your doctor about your sides. Some people need an antidepressant, some an anti-anxiety, for others a sleep aid. I am aware of some people who needed a stimulant so they can get moving and function. I don't recommend xanax since they are addictive but some people had one or two so that in an emergency they knew thay had an ace in the hole. You may just need a little help.
You may also be starting into anemia. That's a very different deal and an easy test.
Successful treating sometimes simply requires managing those pesky symptoms.
good luck.
willy
Hi,
Welcome to the forum. Sundays are really slow, you will get more replies tomorrow when more people are online.
I am writing mostly to bump the thread up. I had different tx drugs so even though I had a hard time I think you will feel more supported by ppl who have been or are currently txing with the same meds.
Remember that what you are suffering right now is not uncommon.
You are not alone. We all understand what you are going through.
Welcome to the forum. Sundays are really slow, you will get more replies tomorrow when more people are online.
I am writing mostly to bump the thread up. I had different tx drugs so even though I had a hard time I think you will feel more supported by ppl who have been or are currently txing with the same meds.
Remember that what you are suffering right now is not uncommon.
You are not alone. We all understand what you are going through.
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