Aa
Feeling a little confused with my Hep and treatment
Hi everyone. I live in Canada and I am g1a and on the new Merck trial studies which are mk-5172 and mk-8742. I'm about 3/4 finished my treatment and I still get sick with a lot of symptoms. I'm on an interferon free study and its supposed to be very promising. I guess my concern is that I have been very ill and up and down with Hep for 17 years now and I was getting ill with migraines, relentless nausea, neuropathy, fibromyalgia, sore lymph nodes, muscle pain, dizziness, vertigo, cognitive problems and lack of concentration, etc. Now, I still have all these flare-ups and the flare-ups have gotten worse in the last year and then the panic attacks started happening.
I guess I'm a little concerned because I still get all these symptoms and I'm not sure if I'm supposed to feel somewhat well near the end of treatment or after treatment. I then start thinking that maybe its something else and what else could it be? I know most people are asymptomatic but I have always suffered with severe symptoms for years. I was able to hold onto a part-time job but I have been jobless and living off of disability for over a year with my 14 year old daughter.
Is there anyone else that has been going through any of these issues? I would like to hear some of your opinions, please. I need reassurance as this has been bothering me. Thanks.
I guess I'm a little concerned because I still get all these symptoms and I'm not sure if I'm supposed to feel somewhat well near the end of treatment or after treatment. I then start thinking that maybe its something else and what else could it be? I know most people are asymptomatic but I have always suffered with severe symptoms for years. I was able to hold onto a part-time job but I have been jobless and living off of disability for over a year with my 14 year old daughter.
Is there anyone else that has been going through any of these issues? I would like to hear some of your opinions, please. I need reassurance as this has been bothering me. Thanks.
Best Answer
I've had chronic everything you've had and more for the past 25 years from hcv and want to reassure you. Everyone is unique and everyone I have known, their bodies react different from others to medications, supplements, etc. I have observed over the years that this virus creates more chronic conditions than any other disease I've ever known. It's been a long haul and I can surely relate to how easy it is to get discouraged because the liver effects every part of your body. I know very much how you feel because I've had similar chronic pain and difficulties managing my life as a result. Don't let it get you down, just try to get to SRV and things will turn around. Take care and keep in touch.
In this thread I earlier said I had been there and done that with probiotics.
I had been on 2 months of a product that contained Bifidobacterium longum subsp. infantis alone.
I also had yogurt a few times a week.
I gave up on week 7 or 8.
Symptoms for the most part, continued.
About a week or two ago I tried again, this time with products that contained several types of Bifidobacterium and Lactobacillus. I think it is helping. I can not say for sure if it is the probiotics or just the increased exercise I have been doing, maybe both, my lower gut is feeling more peaceful.
I had been on 2 months of a product that contained Bifidobacterium longum subsp. infantis alone.
I also had yogurt a few times a week.
I gave up on week 7 or 8.
Symptoms for the most part, continued.
About a week or two ago I tried again, this time with products that contained several types of Bifidobacterium and Lactobacillus. I think it is helping. I can not say for sure if it is the probiotics or just the increased exercise I have been doing, maybe both, my lower gut is feeling more peaceful.
Interesting that you mention the Vitamin D deficiency.
My husband is post transplant 18 months with complications in his bilary tree and post transplant episodes of hepatic encephalopathy due to portosystemic shunts the drs. say that didn't clear. His Hep C virus is also back.
About 4 months ago, he consulted with a kidney specialist as his creatanine was bordering 2.0. He tested his Vitamin D and found it very low. He put him on 4,000 ius daily.
Based on your and his experience, I would say the Vitamin D deficiency is something that should be checked into by those who have Hep C. The liver drs never checked it.
My husband is post transplant 18 months with complications in his bilary tree and post transplant episodes of hepatic encephalopathy due to portosystemic shunts the drs. say that didn't clear. His Hep C virus is also back.
About 4 months ago, he consulted with a kidney specialist as his creatanine was bordering 2.0. He tested his Vitamin D and found it very low. He put him on 4,000 ius daily.
Based on your and his experience, I would say the Vitamin D deficiency is something that should be checked into by those who have Hep C. The liver drs never checked it.
Hi, iv had hepc g1 for 12-15 years, i have slight liver damage, iv under gone 2 lots of treatment neither have been successful
Thanks for your reassurance and advice. I do take probiotics away from my meds and I feel its okay to take it, as my nurse in the clinic doesn't want me taking anything that is going to mess up my meds. That is all vitamins, supplements and antacids. The neuropathy and nausea are probably the worst symptoms and even the DAA's have side effects which are similar. So, I've got one month to go and it hasn't been that bad at all. I take Ciprolex for my depression and it helps so hopefully I'll be able to work in the near future as we have been living on peanuts LOL. It's just my daughter, myself and our cat. Take care.
Wow, thanks for the reality check and its good to know that I may not come out of this completely well but I can work on these health issues without the Hep C being the underlying cause. That's quite interesting that you still had some symptoms that were left behind. I'm not where you are at but I have been undetected for a month and I still have a bunch of symptoms. I guess the body needs some time to heal from all of this. I have never had my patience tried sooooooo much over the past year. I'm a fighter and I'm winning!!
Thanks for your input. Yes, I know the Hep C can really do a number on your brain. I have been on anti-depressants for awhile now, since the spring and they have been working well but I do have other symptoms that are Hep C related and I have spoke to others and there is a wide range of people that are symptomatic and asymptomatic. I'm undetected though, YEAHHH. I only have 4 weeks to go and I deal with whatever is left and without the underlying cause!! Take Care.
Cheese, stop worrying... and give it some time. I've heard it takes a while for damage from hcv to heal an d it has a much better chance of healing now, yu are so lucky. It's going to take as long as your body needs to adjust and heal.
Thanks
Yogurt, probiotics, enteric coating, "align"
Been there, done that.
Same issues.
Yogurt, probiotics, enteric coating, "align"
Been there, done that.
Same issues.
Hello DWBH's advice was really good, so was Cheesegraters.
I do not think that every side effect has been documented so that when we have a side effect we are told, no that can't be it.
Hang in there, during tx I never felt any better. It has taken me a year to improve. Everyone is different and I had a lot of damage, cirrhosis so your results may vary :)
Cheesegrater, I don't know if this will help you, I started taking probiotics back in May (approx) and have noticed a huge improvement in how I feel on a daily basis.
I started out years ago with yogurt, good for the gut...then started taking acidolphilus, then probiotics.
It add "friendly flora" to our digestion track and gets rid of the bad stuff. I know, not very scientific. Just sharing my experience.
My cognitive abilities are not what they were pre-tx 2008 but getting better every day
Take care
I do not think that every side effect has been documented so that when we have a side effect we are told, no that can't be it.
Hang in there, during tx I never felt any better. It has taken me a year to improve. Everyone is different and I had a lot of damage, cirrhosis so your results may vary :)
Cheesegrater, I don't know if this will help you, I started taking probiotics back in May (approx) and have noticed a huge improvement in how I feel on a daily basis.
I started out years ago with yogurt, good for the gut...then started taking acidolphilus, then probiotics.
It add "friendly flora" to our digestion track and gets rid of the bad stuff. I know, not very scientific. Just sharing my experience.
My cognitive abilities are not what they were pre-tx 2008 but getting better every day
Take care
Hi Corky,
I'm another Canuck with HCV.
Where did you go for your treatment?
I have been on DAA for 24 weeks, ending in july (?). This October I was given the news I am Still Virus free. I found this to be a surprise because although many symptoms decreased while I was on treatment (and a couple others due to the meds came on), some long standing symptoms I always thought were from Hep C never completely went away.
I even had a flare-up of feeling even worse about a week or 2 after I stopped the meds. Convincing me I had relapsed, though blood tests showed I did not. I have had difficulty thinking, focusing, lower gut discomfort, joint pain, insomnia for many years. A lot of my symptoms SEEM to be linked to my lower gut.
Currently things are better, but many of the old symptoms have not gone, causing me to wonder is it HCV related or have the doctors (several of them) missed some facts somewhere.
A good example is my lack of vitamin D. I was having a horrid time with extreme difficulty thinking and feeling ill. My GP and hepatologist told me my bloodwork looked fine (ALT, AST, bla bla bla) and that I was not anywhere near cirhotic or the related encephalopathy that often accompanies cirhosis. A radio show on how one researcher thought Canadians were not getting enough Vitamin D (he suggested the body makes thousands of IU's per hour in sunlight) prompted me to take 4000 IU a day for a few weeks. By week 2 I KNEW I had improved. I soon found out that those with HCV tend to be Vitamin D defficient! After a few months I was told by my hepatologist to lower it, I told him my findings, and the fact that those with HCV tend to be defficient but he was on about that level being toxic and that it was not safe.... so I went to 1000 to 2000 IU/day or every other day. I stayed there for 3-4 years.
In December 2012 I had a back injury that a male in his 50's should not the specialists said. Blood work was done by an endocrinologist and I was found to be low in vitamin D! After years of taking 2000 IU a day a few days a week at least, I was still low! I was put on 10,000IU/day and over the next 2 months I felt even better, but still the old symptoms hang in there though to a lesser degree. My vit D level is now in the normal range.
So what is it? I dunno, my main concern is lower gut discomfort and a feeling like I am fighting off a bug, especially in the am hours in bed before I get up.
And they say I am still HCV free.
Go figure.
Cheese
I'm another Canuck with HCV.
Where did you go for your treatment?
I have been on DAA for 24 weeks, ending in july (?). This October I was given the news I am Still Virus free. I found this to be a surprise because although many symptoms decreased while I was on treatment (and a couple others due to the meds came on), some long standing symptoms I always thought were from Hep C never completely went away.
I even had a flare-up of feeling even worse about a week or 2 after I stopped the meds. Convincing me I had relapsed, though blood tests showed I did not. I have had difficulty thinking, focusing, lower gut discomfort, joint pain, insomnia for many years. A lot of my symptoms SEEM to be linked to my lower gut.
Currently things are better, but many of the old symptoms have not gone, causing me to wonder is it HCV related or have the doctors (several of them) missed some facts somewhere.
A good example is my lack of vitamin D. I was having a horrid time with extreme difficulty thinking and feeling ill. My GP and hepatologist told me my bloodwork looked fine (ALT, AST, bla bla bla) and that I was not anywhere near cirhotic or the related encephalopathy that often accompanies cirhosis. A radio show on how one researcher thought Canadians were not getting enough Vitamin D (he suggested the body makes thousands of IU's per hour in sunlight) prompted me to take 4000 IU a day for a few weeks. By week 2 I KNEW I had improved. I soon found out that those with HCV tend to be Vitamin D defficient! After a few months I was told by my hepatologist to lower it, I told him my findings, and the fact that those with HCV tend to be defficient but he was on about that level being toxic and that it was not safe.... so I went to 1000 to 2000 IU/day or every other day. I stayed there for 3-4 years.
In December 2012 I had a back injury that a male in his 50's should not the specialists said. Blood work was done by an endocrinologist and I was found to be low in vitamin D! After years of taking 2000 IU a day a few days a week at least, I was still low! I was put on 10,000IU/day and over the next 2 months I felt even better, but still the old symptoms hang in there though to a lesser degree. My vit D level is now in the normal range.
So what is it? I dunno, my main concern is lower gut discomfort and a feeling like I am fighting off a bug, especially in the am hours in bed before I get up.
And they say I am still HCV free.
Go figure.
Cheese
"Is there anyone else that has been going through any of these issues?"
_____________________________________________
I haven't heard of anyone who have had these symptoms with so little liver damage you stated in your continued post. These are complaints that people have with advanced liver damage. But some of the symptoms your having while on treated are not unusual complaints. Many people are effected by hepatitis C drug therapy. You are not an exception. Many people don't feel better at the end of treatment. It could take months before you start feeling better. I'm not saying that these pre treatment symptoms aren't real but maybe you thought they are connected to your hep c and in fact it's the stress of knowing you have hepatitis C that is effecting how you feel. I have know doubt that thinking about how hep c effects may effect your health
can resulting in health issues and give you a panic attack. If your not taking something for depression you might want to contact your doctor. Many people take anti-depressants while treating Hep C. It appears, by what I have read on this forum that many people took anti-depressants before treatment. I am not a doctor but know how stressful knowing you have hep C and going thru treatment is. The good thing is your treating your Hepatitis C and for that you should be commended. See your doctor and tell him/her
your concerns. Maybe after completion of your hep c treatment all your symptoms will go away if indeed they are related.
I really wish you the best and looking forward to hearing how your feeling post treatment. The anxiety of all this alone can make you feel sick and your current symptoms my well just be the drug study trial your on. Hang in there.
It sounds like your almost done and on your way to figuring all this out.
DWBH
_____________________________________________
I haven't heard of anyone who have had these symptoms with so little liver damage you stated in your continued post. These are complaints that people have with advanced liver damage. But some of the symptoms your having while on treated are not unusual complaints. Many people are effected by hepatitis C drug therapy. You are not an exception. Many people don't feel better at the end of treatment. It could take months before you start feeling better. I'm not saying that these pre treatment symptoms aren't real but maybe you thought they are connected to your hep c and in fact it's the stress of knowing you have hepatitis C that is effecting how you feel. I have know doubt that thinking about how hep c effects may effect your health
can resulting in health issues and give you a panic attack. If your not taking something for depression you might want to contact your doctor. Many people take anti-depressants while treating Hep C. It appears, by what I have read on this forum that many people took anti-depressants before treatment. I am not a doctor but know how stressful knowing you have hep C and going thru treatment is. The good thing is your treating your Hepatitis C and for that you should be commended. See your doctor and tell him/her
your concerns. Maybe after completion of your hep c treatment all your symptoms will go away if indeed they are related.
I really wish you the best and looking forward to hearing how your feeling post treatment. The anxiety of all this alone can make you feel sick and your current symptoms my well just be the drug study trial your on. Hang in there.
It sounds like your almost done and on your way to figuring all this out.
DWBH
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
