Aa
New to treatment, so many questions!!
Just found this site. Started therapy 4 weeks ago for HepC (Ribasphere & Sovaldi) geno type 3a. Unfortunately Dr I had, so bad & dismissing of any complaints of side effects, even the one where my meds say call your Dr immediately. Found new Dr, but do not see until 12/4/2014. Does anyone know someone that has completed therapy & is clear.
P: : -). That's what others did for us - so it is a blessing for us to be able to pass it on. P
Thank you, the nausea has almost disappeared since I began taking it with food. Since I am going to a new Dr tomorrow after almost 5 weeks of treatment and have not had any new blood drawn, I have no idea if I am anemic. Hopefully the new Dr will order a follow up blood test and I will see.
Thanks to all who have helped on this site, it feels so good to have support from people going through the same thing!!
Thanks to all who have helped on this site, it feels so good to have support from people going through the same thing!!
Will do, P.
As for. the nausea, I suggest that, if you are not already eating at least a small meal or snack, ywith some protein and 'good' fat, try doing that before taking your meds even though the meds say they can be taken with or without food. I only had nausea once in the 24 weeks and that was during the time my HMG dropped to 8.8 AND I had really over done it the previous 2 days. A little gingerale and rest corrected that.
The other thing, is please drink LOTS of water, 1 oz for every Lb of body weight, up to 1/2 your body weight. I know I said that before, but it that really does help.
Go get that Dragon, Girl! Pat
As for. the nausea, I suggest that, if you are not already eating at least a small meal or snack, ywith some protein and 'good' fat, try doing that before taking your meds even though the meds say they can be taken with or without food. I only had nausea once in the 24 weeks and that was during the time my HMG dropped to 8.8 AND I had really over done it the previous 2 days. A little gingerale and rest corrected that.
The other thing, is please drink LOTS of water, 1 oz for every Lb of body weight, up to 1/2 your body weight. I know I said that before, but it that really does help.
Go get that Dragon, Girl! Pat
I was told by my Dr. no Prilosec but I can take pepcid 10 mg 2x a day. You can even take it right before the trial med. Prilosec works different and it reduces the acid needed for these pills way to much. I have had no stomach issues doing this and my second week bloods where 15/und and my liver enzymes are 21 & 15. Sometimes I can get away with just 1 Pepcid a day. I am on the trial sofosbuvar 400 mg and gs-5816 100 mg. Today is day 35.
You definitely will learn the lingo (grin).
EOT - end of treatment
TX - Treatment
SVR - Sustained Viral Response (Undetected for the virus for a sustained time. An SVR at 12 weeks after EOT is considered a cure with the new treatments. It used to be at 24 weeks.)
It sounds as if your body is starting to accommodate a little.
I had traveling mouth sores throughout treatment and had water at the bedside and used biotene toothpaste/gel/mouthwash which helped some. I also rinsed with peroxyl mouthwash (colgate make a brand - as do other oral care companies).
I never had nausea.
I drank alot of water, and moisturized frequently.
As for insomnia, I took my PM dose of ribavirin at 4 pm, which helped.
For me, it all got easier with time (other than counting the days...when you count days...it seems to go on forever...and I only had to do 12 weeks of treatment...and then you count the days till your post blood draws). It was all pretty easy and worth it for me...especially since I achieved the desired SVR.
Good Luck!!!! Jo
EOT - end of treatment
TX - Treatment
SVR - Sustained Viral Response (Undetected for the virus for a sustained time. An SVR at 12 weeks after EOT is considered a cure with the new treatments. It used to be at 24 weeks.)
It sounds as if your body is starting to accommodate a little.
I had traveling mouth sores throughout treatment and had water at the bedside and used biotene toothpaste/gel/mouthwash which helped some. I also rinsed with peroxyl mouthwash (colgate make a brand - as do other oral care companies).
I never had nausea.
I drank alot of water, and moisturized frequently.
As for insomnia, I took my PM dose of ribavirin at 4 pm, which helped.
For me, it all got easier with time (other than counting the days...when you count days...it seems to go on forever...and I only had to do 12 weeks of treatment...and then you count the days till your post blood draws). It was all pretty easy and worth it for me...especially since I achieved the desired SVR.
Good Luck!!!! Jo
Sorry I do not understand some of the abbreviations like tx, svr, eot?
I will hopefully get to know them from this forum.
First 2 weeks of treatment were fine, but then had vomiting for about a 1/2 hr one morning & called the DR, no response.
Then all the other goodies began, not sleeping, extreme depression, some nausea, some sores in my mouth (never had any in 30 years), itchy skin, constipation (almost never had before meds) tired all the time, foggy brain felt totally unable to do things I had always done with ease, some minor pain in my joints, irritable all the time!! Phew, thought I couldn't make it, especially since my genotype 3a, which was one of the easiest to cure when interferon was included, now is the hardest 65% chance of curing.
Some of the side effect have eased or almost disappeared, but so many more months of this is hard, but I am going to make it through.
Thanks for all the help and support!!!
I will hopefully get to know them from this forum.
First 2 weeks of treatment were fine, but then had vomiting for about a 1/2 hr one morning & called the DR, no response.
Then all the other goodies began, not sleeping, extreme depression, some nausea, some sores in my mouth (never had any in 30 years), itchy skin, constipation (almost never had before meds) tired all the time, foggy brain felt totally unable to do things I had always done with ease, some minor pain in my joints, irritable all the time!! Phew, thought I couldn't make it, especially since my genotype 3a, which was one of the easiest to cure when interferon was included, now is the hardest 65% chance of curing.
Some of the side effect have eased or almost disappeared, but so many more months of this is hard, but I am going to make it through.
Thanks for all the help and support!!!
I treated with the same for 12 weeks and reached SVR (as of November 20th (undetected 14 weeks after EOT).I had to have my ribivirin reduced after 2 weeks due to anemia. Though I had some side effects, they were quite manageable after my ribavirin was reduced. The reduced dose was maintained from 2 to 12 weeks (the duration of treatment for genotype 2s).
I am not sure what side effects you voiced to your physician that you did not get the response that you felt you should. Perhaps they had reasons that they did not properly explain to you?
We are all individuals with differing base problems and sensitivities. I am very healthy other than having had hepatitis.
I love writing "had" and am hoping you work out any sides with your health care team and are able to love writing "had" too someday soon!
Jo
I am not sure what side effects you voiced to your physician that you did not get the response that you felt you should. Perhaps they had reasons that they did not properly explain to you?
We are all individuals with differing base problems and sensitivities. I am very healthy other than having had hepatitis.
I love writing "had" and am hoping you work out any sides with your health care team and are able to love writing "had" too someday soon!
Jo
Hi punkey! I treated with the same meds for 12 weeks (GT 2). For me it was hard, maybe because my expectations were high after reading rave reviews on this tx, and also I had nothing to compare it to, like previous tx with interferon, like others had.
The best I felt on it was the first week. During the second week my urine turned dark and I knew those were my erythrocytes. Sure enough, soon I started to gasp for air after even minor exertions. 4 weeks into tx the blood test showed my hemoglobin dropped from 15.5 to 12.1 and it did not bounce back till 4 weeks EOT. Viral load has been undetected since 4 weeks tx. Got my 12 weeks EOT SVR hehe :)
So, my biggest problem with this tx was fatigue due to anemia, lack of sleep and depression. The doc said that those who had high hemoglobin to begin with, feel it worse than people who don't have such a big drop. I never had nausea, like others report, even when I took it on empty stomach (can't eat in the morning). Besides, I lost my appetite, but could not fast either. It's like food lost its taste. I could not sleep, and when I managed to pass out reading something boring, I would wake up not rested at all. During the last 4 weeks of tx I was counting days.
Had riba-rage episode, and was getting severely depressed. The depression did not start to lift until 2-3 months EOT. It was bad. Oh yeah and the other thing was my skin. About 4 weeks into tx, I noticed that minor nicks and abrasions just would not heal. The scab would form and then -- nothing, the new skin was not forming underneath. Often I'd scratch the scab off and it'd start anew. So, by the end of tx I was all covered in scratches lol but they all started to heal about 2-3 weeks EOT and my skin is fine now.
The only time I was nauseous was the first day EOT when my body did not get the meds it got used to. Then my hair started falling out and this was going on for 2-3 months EOT. Now, 4 months EOT it stopped. And in many ways I feel so much better. The return of sleep was the best thing. Things are getting better every day, like, my eyes don;t get dry anymore, and I have so much more energy.
The other thing, I think Sovaldi + riba did a number on my immune system, so, if you have some other problem, besides HCV, it may surface or become worse. I had a chronic infection, which my immune system kept "under the rugs", and I even believed that I had it beaten years ago. But it started to surface 4 weeks into tx and was getting progressively worse.But in a way I'm glad it happened so I can address it now. Though it indicates that a part of my immune system has not recovered to the pre-treatment level.
So it was hard, but overall, I am very glad I had this tx and I no longer have that horrid virus. Thanks Gilead :)
The best I felt on it was the first week. During the second week my urine turned dark and I knew those were my erythrocytes. Sure enough, soon I started to gasp for air after even minor exertions. 4 weeks into tx the blood test showed my hemoglobin dropped from 15.5 to 12.1 and it did not bounce back till 4 weeks EOT. Viral load has been undetected since 4 weeks tx. Got my 12 weeks EOT SVR hehe :)
So, my biggest problem with this tx was fatigue due to anemia, lack of sleep and depression. The doc said that those who had high hemoglobin to begin with, feel it worse than people who don't have such a big drop. I never had nausea, like others report, even when I took it on empty stomach (can't eat in the morning). Besides, I lost my appetite, but could not fast either. It's like food lost its taste. I could not sleep, and when I managed to pass out reading something boring, I would wake up not rested at all. During the last 4 weeks of tx I was counting days.
Had riba-rage episode, and was getting severely depressed. The depression did not start to lift until 2-3 months EOT. It was bad. Oh yeah and the other thing was my skin. About 4 weeks into tx, I noticed that minor nicks and abrasions just would not heal. The scab would form and then -- nothing, the new skin was not forming underneath. Often I'd scratch the scab off and it'd start anew. So, by the end of tx I was all covered in scratches lol but they all started to heal about 2-3 weeks EOT and my skin is fine now.
The only time I was nauseous was the first day EOT when my body did not get the meds it got used to. Then my hair started falling out and this was going on for 2-3 months EOT. Now, 4 months EOT it stopped. And in many ways I feel so much better. The return of sleep was the best thing. Things are getting better every day, like, my eyes don;t get dry anymore, and I have so much more energy.
The other thing, I think Sovaldi + riba did a number on my immune system, so, if you have some other problem, besides HCV, it may surface or become worse. I had a chronic infection, which my immune system kept "under the rugs", and I even believed that I had it beaten years ago. But it started to surface 4 weeks into tx and was getting progressively worse.But in a way I'm glad it happened so I can address it now. Though it indicates that a part of my immune system has not recovered to the pre-treatment level.
So it was hard, but overall, I am very glad I had this tx and I no longer have that horrid virus. Thanks Gilead :)
Also Gt3 - 2 days of meds left out of 24 weeks. The only side effects I have had are the fatigue and some anemia from the Riba. The closer to EOT I get, the better I have been feeling. I'm sure there are some Gt3s who have cleared, but I have no recent memory (thanks to Interferon in the 90s) so can't tell you who.
Hang in there. Even though we are the hardest genotype to cure, many are and soon there will be another arrow or two in our quiver - Bristol-Myers Squibb and AbbVie to name a couple.
Drink losts of water to hydrate yourself, eat liver friendly foods and take uour meds.
Good Luck!! Pat
Hang in there. Even though we are the hardest genotype to cure, many are and soon there will be another arrow or two in our quiver - Bristol-Myers Squibb and AbbVie to name a couple.
Drink losts of water to hydrate yourself, eat liver friendly foods and take uour meds.
Good Luck!! Pat
Ask the Dr. for Ondansetron 4mg this stuff works so fast it's unbelievable. I had nausea 24/7 first time I treated on triple therapy. Miracle pill ! Good luck friend
Peace
Deb
Peace
Deb
Hi Punkey, I'm on my 8th week of Sovaldi and Olysio but am GT1a. My doctor is pretty much the same way and I also changed doctors but was able to get in fairly quickly. Lucky.
I was having a very difficult time with the drugs up until a little over a week ago. Around 4 weeks I almost quit because my nausea was so terrible but I was able to get some Zofran from my doctor and was okay to keep going. That 4th week was the worse for me and it has gotten better since so hang in there. I also had really high blood pressure and a racing heart a couple of times but these also have slowed down. I still feel a bit disoriented at times and tired but again, not like in the previous weeks. I guess my body finally adjusted to the meds.
You don't say want your side effects are but if they include nausea the Zofran helps a lot and is safe. However, one doctor told me it was okay to take prilosec but my new doctor says no because the drugs need the acid. He did say it is okay to take 20 mg but to take it 12 hours before my meds. Hopefully, this might help you some. Take care and I hope you quickly feel better.
I was having a very difficult time with the drugs up until a little over a week ago. Around 4 weeks I almost quit because my nausea was so terrible but I was able to get some Zofran from my doctor and was okay to keep going. That 4th week was the worse for me and it has gotten better since so hang in there. I also had really high blood pressure and a racing heart a couple of times but these also have slowed down. I still feel a bit disoriented at times and tired but again, not like in the previous weeks. I guess my body finally adjusted to the meds.
You don't say want your side effects are but if they include nausea the Zofran helps a lot and is safe. However, one doctor told me it was okay to take prilosec but my new doctor says no because the drugs need the acid. He did say it is okay to take 20 mg but to take it 12 hours before my meds. Hopefully, this might help you some. Take care and I hope you quickly feel better.
Hi Punkey, welcome to the forum. I am currently treating with the same meds however I'm 1a and I was UND at 21 days since SOT, and have been that way since. I have 7 wks left. It's a very good Tx. Wish you the best of luck. Hang in there and stay strong
Peace
Deb
Peace
Deb
Welcome to the forum. There are many people on this forum that have and are treating thier hep C. I treated my hep c and now cured. I didn't treat with the drugs you referenced but I'm sure some member here has. Doctor don't
seem real give much support for sides. It happens more time than not. Hang around and get the support you need. This is a good place to get that support.
Best to you
seem real give much support for sides. It happens more time than not. Hang around and get the support you need. This is a good place to get that support.
Best to you
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