Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: Sleepingb32 on January 10, 2015, 02:59:39 pm
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This is the first time I am posting and being on treatment, I could use the support. I have been on four treatments prior to this new treatment and they have all been tough. I started the Sovaldi/Olysio combo 3+ weeks ago. Monday will be the 4th week and I have to get labs. This is so scary for me. I was diagnosed right before my twenty-first birthday and I am 32 now. It has been a long ride and I am hoping this treatment works. I am symptomatic and have experienced side effects in this round of fun. I am more fatigued than usual, have the worst headaches ever, and horrible body/joint pain. I have avoided the rash but was itchy the first week. I am doing my best not to complain though and to stay positive. I am grateful that I was approved by the drug companies to receive these drugs absolutely free. I have started drinking more water since I have read that it can help with the pain and i take tylenol. Any tips or advice is welcome. I think it helps knowing i'm not alone.
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Hi and welcome! I am new to this forum also, but just wanted to say hi and sorry you are having such a hard time. It seems like you've been through a lot in the last 10 years or so. This virus and the treatments affect everyone differently.
I was diagnosed in July 2014, but have had hep c for more than 30 years (as far as anyone can figure out, but that doesn't really matter anyway...what matters is that this virus is eradicated!). I am GT 3a and currently in an AbbVie trial, starting week 5. I am not having any side effects at all from the drugs I am taking, so I won't be of much help in your situation, but from what I've read in these forums so far, there are quite a few people here who are or have taken the sovaldi/olysio regimen. Hopefully one of them will reply to your post with some helpful information.
In the meantime, I am sending my best wishes for your successful treatment and hope you feel better soon. --Max
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Hi! I am on S/O, next week will be my last. It was better and better feeling. All side effects almost gone, and I am really feeling well. It was a little bit tough in the beginning, but I think more from a scare of unknown. Good luck and SVR 12! D
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Hi Sleepingb32,
I am so happy you found us, honestly don't know where my brain would be today without the support of all the people on this forum.
It sounds like you really have been through the ringer with the treatments you have been through. You are one tough tough cookie! I was on S/O combo for 8 weeks and was switched over to Harvoni due to an allergic reaction with Olysio.
Personally now that I look back I think the weeks I really felt the worst were when the medications and my body was kicking the crap out of the Hep C, right before I became undetected. After that 9th week slowly but surely I am starting to feel way way better. I can't even explain it but my fog is lifting, I have days where I am human again, people keep telling me how great I look. Just this morning I noticed those horrible black circles I have had under my eyes for years are actually not there and I don't have any cover up on!
Every day is not perfect and I listen to my body, when I need to rest I do it. I drink a ton of water now and think about everything I eat and drink. My big gift to myself was a Vitamix so I can jump on my own smoothie train.
We are all supportive of each other and it truly has made a huge difference for me. When I am feeling down I reach out and someone always brings me back around. This isn't a race, it's a slow steady battle that we are all going to beat. I know when the day comes I am SVR I will probably break down in hysterics not just because I made it but because I will be stronger to support those still battling.
You may want to ask your doctor about how much tylenol you are taking, anything we take adds to our load on our sick livers. Perhaps if you take the S/O in the morning you can switch it slowly over to taking it in the evening before bed, then you will sleep through the headache :). Keep up with the water, that really helped my headaches. It's going to get better, week 4-8 was the toughest time on me, sleep was horrible, I was just yucky but now I am on the other side and honestly it wasn't that bad and nothing like the old treatment sides (so I have been told).
Congratulations, you are well on your way and we are all going to beat this beast really soon!
Mel
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Hi and welcome! I am new to this forum also, but just wanted to say hi and sorry you are having such a hard time. It seems like you've been through a lot in the last 10 years or so. This virus and the treatments affect everyone differently.
I was diagnosed in July 2014, but have had hep c for more than 30 years (as far as anyone can figure out, but that doesn't really matter anyway...what matters is that this virus is eradicated!). I am GT 3a and currently in an AbbVie trial, starting week 5. I am not having any side effects at all from the drugs I am taking, so I won't be of much help in your situation, but from what I've read in these forums so far, there are quite a few people here who are or have taken the sovaldi/olysio regimen. Hopefully one of them will reply to your post with some helpful information.
In the meantime, I am sending my best wishes for your successful treatment and hope you feel better soon. --Max
Thank you so much! I hope your treatment goes well also. :)
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Hi! I am on S/O, next week will be my last. It was better and better feeling. All side effects almost gone, and I am really feeling well. It was a little bit tough in the beginning, but I think more from a scare of unknown. Good luck and SVR 12! D
Good luck! I'm so glad that the side effects are getting better for you. The last few days have been better. In the beginning there were times that I felt like I was burning from the inside out. That has passed. I think the joint/muscle pain and the headaches are the worst. I had my 4 week blood work done today so hopefully it will come back better.
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Hi Sleepingb32,
I am so happy you found us, honestly don't know where my brain would be today without the support of all the people on this forum.
It sounds like you really have been through the ringer with the treatments you have been through. You are one tough tough cookie! I was on S/O combo for 8 weeks and was switched over to Harvoni due to an allergic reaction with Olysio.
Personally now that I look back I think the weeks I really felt the worst were when the medications and my body was kicking the crap out of the Hep C, right before I became undetected. After that 9th week slowly but surely I am starting to feel way way better. I can't even explain it but my fog is lifting, I have days where I am human again, people keep telling me how great I look. Just this morning I noticed those horrible black circles I have had under my eyes for years are actually not there and I don't have any cover up on!
Every day is not perfect and I listen to my body, when I need to rest I do it. I drink a ton of water now and think about everything I eat and drink. My big gift to myself was a Vitamix so I can jump on my own smoothie train.
We are all supportive of each other and it truly has made a huge difference for me. When I am feeling down I reach out and someone always brings me back around. This isn't a race, it's a slow steady battle that we are all going to beat. I know when the day comes I am SVR I will probably break down in hysterics not just because I made it but because I will be stronger to support those still battling.
You may want to ask your doctor about how much tylenol you are taking, anything we take adds to our load on our sick livers. Perhaps if you take the S/O in the morning you can switch it slowly over to taking it in the evening before bed, then you will sleep through the headache :). Keep up with the water, that really helped my headaches. It's going to get better, week 4-8 was the toughest time on me, sleep was horrible, I was just yucky but now I am on the other side and honestly it wasn't that bad and nothing like the old treatment sides (so I have been told).
Congratulations, you are well on your way and we are all going to beat this beast really soon!
Mel
Thank you for your kind words. I, too, cannot wait to reach SVR. The longest treatment I have been on was 72 weeks, so I know I can do this. It just has different side effects and when I mention them to the nurse/pa/doc, they look at me sideways. I'm so glad I signed up for this forum and thanks for the advice. My dream is to kick this virus' butt and then get even healthier. I can't wait!!
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Hi Sleeping b
Welcome to the forum. Sorry you have been having some sides. I finished my S/O treatment dec 21. My sides were anxiety, joint and muscle pain and stiffness. I did however respond well to tx. UD at 4 weeks and EOT. Liver enymes back to normal almost immediately. I never had prior txs so it is hard to know how these new txs are in comparison, but from what I've heard they are a cake walk. Also my appetite was ravenous during tx. Hope you can get thru this without too much discomfort, but look on the bright side. No more hep c! I'm due on tbe 20th for my 4 week bloodwork. I will let you know if I killed it.. blessings Sunrise
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Wow, Sunrise! Fingers and toes crossed for you! Wishing you a great big SVR next week!
And best wishes to you Sleeping b! Hope everything goes well and you finally get rid of the beast! You got a lot of good living ahead of you!
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Hi CE
Thank you so much for your encouragement. Where are you? on the other side of the pond? Because that drug you're mentioning doesn't sound familiar I guess its Ribavirin.? kidding aside I hope you're feeling okay I know the side effects on that kind of stuff I'm still getting over mine...blessings... Sunrise
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Sunrise, what drug are you referring to?
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Oh the ribasphere? Is that ribavirin?
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Yes, it's the brand name. Ribavirin is the generic name.
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oh I'm sorry my bad. I thought it was the word they used for that in Europe. Please forgive any misunderstanding. I haven't used that drugs so I don't know what they call it except ribsvirin
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Oh, that's ok! How else do we learn about this stuff unless we ask? Lol! Trust me, I knew nothing about any of this 5 months ago. I just read a lot and ask a lot of questions. I'm on the same side of the pond!
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Well hi neighbor
I'm pretty new to this whole thing too. Ive been on it since last May since I was diagnosed. I read endlessly to research and catch up with what has been evolving in txs. Started my S/O tx 12 weeks. Still have side effects, but think they are subsiding alittle. Yes next weeks test is a big one... I am holding my thoughts just praying this will be behind me as well as all of us...Blessings...Sunrise
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sunrise, what kind of EOT labs will you be getting, i know the one on the 20th, but then when?
kate
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Hi Kate
The 20th is a 5 week post treatment then in March is my 12 week post treatment. They do a cbc and 2 types of viral load tests. PCR and a quantitative test. Hopefully it will be UD. Blessings. ..Sunrise
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I meant 4 week sorry.
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Sunrise, nerves have got to be getting the best of you. I know I will be a basket case waiting for post treatment results! The 20th is my 12 week labs. I will be half way done.
Blessings to you too!
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Thank you and good luck to you on your test as well! Im trying not to stress. Just keep busy. My legs hurt more since tx. Hope this subsides. ..Sunrise
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Hi Sunrise,
I am pretty achy especially in my legs as well. Hoping it gets better and wishing I had a soaker tub!
Hope your aching subsides soon!
Mel
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Mel, my bathtub is my best friend, when we bought this house that was my only requirement, pretty sure i did not care if it had a kitchen (because hates to cook) but the tub had to be there lol
kate
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Kate,
I am sooooooooooo jealous! When I retire that's going to be a must have for me as well! I don't even care about jets, just want a deep soaker tub!!
Mel
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mel, thats funny you mentioned the jets, I have them and have never turned them on lol (I'm a bubble kind of girl and you can't have bubbles with the jets) my younger daughter is the only one who ever uses the jets.
kate
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Exactly, you can't use bubbles or oils with jets and I'd rather put a nice oil in and just sink in and melt! I am having thoughts of going to a hotel with soaker tubs for a night just to get my fix!
Maybe an overnight runaway is in order!
Mel
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My legs don't even hurt, but that sounds VERY enticing!
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Mine don't hurt either, but save a spot for me.....I'm in!
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Hey Everyone
Yes a soak sounds great right now. Im eating right now . Worked alot so my ankles are hurting. Its wierd because I got this lump behind on my Achilles tendon on the tx. Still bothers me. Hope it goes away... How' you all doing?
Def Mel take! a night off and go to a hotel with a nice bath!. Good for you!
Hey Brad! 2 weeks til your test?
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Sunrise Test is about 3 wks, results 4wks. Time is flying by but I'm sure that clock is going to slow way down results week! Good luck on your tests coming up.
Brad
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Sounds like we need a giant hot tub somewhere! There are so many of you I would love to meet one day. You have all made the past few months of my crazy life since I have diagnosed so much better. I really don't know the words to thank all of you who are carrying me through this insanity but thank you and one day may we all find that giant hot tub to sit and soak in with our big glasses of ice water toasting to SVR24!
Mel
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It's crazy, but for the short time I have been on here, I feel like I have known you all a long time! Maybe it's because our lives are so parallel. All I know is this is the support I need right now. People that I can talk to and they know how I REALLY feel. Thanks so much!
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guise, I have a pretty big tub but I'm telling you right now we are all not gonna fit lol, we are going to have to go the hot tub route and i love the idea of having our water with us maybe in champagne glasses so we can toast ourselves.
I think the reason you get so close so fast is from not having anyone who knows what your thoughts are or dealing with the same fears and happiness. My husband was my rock last year on treatment (and didn't even blink an eye when i was completely bald), but its still not the same as being in my shoes. He was so nervous about this tx after last time that i try not to even talk about it, and only two other people know besides him. I can say from last tx, it makes such a difference having someone and someplace to put my fears, thoughts and vents.
sooo yay team
kate
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That is sooo sweet to hear this. I know that for me it made my tx. fly by! If I felt wierd or lonely or had a question, I would just pop on to the forum, and voila all better! It does help to chat with people that know what you are going thru. Even though everyone has different circumstances, we all know how things changed when we got our dx. I am so grateful for you all for caring...Stay warm and feel better kids :-)...blessings. ..Sunrise
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Hi! Thank you so much. Sorry I haven't been on here. I have just been so wiped out. At my 4 weeks labs they said that the machine could not test that low. It will say undetectable if the viral load is greater than 1 but less than 12. That is what has happened to me. I currently have 3 weeks left before my 12 weeks is up. I think I have beat it based on how clear my head has been and a few other indicators I have read about. We'll see! I am pretty nervous. I still have some joint pain, muscle aches, and fatigue. Things are definitely getting better though. I hope things are going well for you!
Hi Sleeping b
Welcome to the forum. Sorry you have been having some sides. I finished my S/O treatment dec 21. My sides were anxiety, joint and muscle pain and stiffness. I did however respond well to tx. UD at 4 weeks and EOT. Liver enymes back to normal almost immediately. I never had prior txs so it is hard to know how these new txs are in comparison, but from what I've heard they are a cake walk. Also my appetite was ravenous during tx. Hope you can get thru this without too much discomfort, but look on the bright side. No more hep c! I'm due on tbe 20th for my 4 week bloodwork. I will let you know if I killed it.. blessings Sunrise
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Hey Sleepinb
I know the joint pain really messes with me. Today was a hard day. How are thosr labs working out? I have my 12week post labs on March 16th. Let us know what the final lab meant... blessings Sunrise
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@sunrise, almost there girl, i have my EOT labs on march 13th, then 12 week one on june, i so just want to be done with this.
kate
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Hi Kate
I hear ya sweetie. It will be over... l know it's hard to be patient. I still feel like I'm doing tx., as waiting for these test results thru the 6 months after, you still have effects. At least I do. You're getting there. You are almost there Kate...just think of the break your liver is getting. Pamper yourself as much as possible. My problem is I just don't have the get up and go. Legs hurt, and hips. I hope this will pass ...my best wishes for you...Sunrise
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Thank you and please let me know. I go for my EOT blood work Monday. Then, I have to wait the four weeks too. It is scary, so we'll see. I hate waiting on labs. :-\