Aa
Post TX Update
Am in week 7 of EOT and hope to have tackled my post treatment (Sovaldi & Riba) side effects. I didn’t have any significant SFX during treatment but have had a bumpy ride since then. The accumulation of the drugs seems to have attacked the weakest link: my digestion. Ironically, at my last doctor’s appointment (1 week post EOT), he asked me how my diarrhea was doing. I proudly told him he must have me confused with another patient because my digestion was rock solid. In fact, I was never even nauseous - not even once throughout tx as most people treating with these meds usually are. He gave me a suspicious look and said that ALL of his patients had D (that’s IBS forum speak for the aforementioned regularity issue) which I thought was strange at the time because he had previously told me that there were no SFX with these drugs beyond fatigue and/or nausea. So, I mentally patted myself on the back for weathering this digestive storm so well especially with my ugly history of IBS and food allergies. Well, I guess the Riba gods overheard my arrogance and decided to take me down to Chinatown. About a week after that I had a full-on relapse into my old pattern of alternating D and C (constipation). It was gutting because I have devoted the past two years to getting that sorted out and thru much deprivation and rigid devotion to a strict diet it was! For me, my gut and brain are partners and when I get digestive problems it’s only a short time later when the black cloud rolls in. And that’s just what happened. A brutal depression set-in that felt beyond intervention. I’ve been there before and frankly it scares me, it humbles me and it reminds me that I live one stop away from the coo coo’s nest. And it was without doubt, the one side effect that I feared the most but I’m hopeful that its behind me now.
IMO, these meds are generally hard on one’s digestion. I’ve read of many who’ve complained of stomach problems and of those who’ve acquired acid reflux and gastritis AFTER they finished treatment. The 12 weeks of daily doses of ribavarin and sovaldi finally broke me down, slowly but surely. I’ve tried to research the effect of these drugs on the gut but have found little information. So the jury is out there but if the number 2 listed SFX for this protocol is nausea it’s probably a safe bet that this stuff effects your digestive track. To be safe I would recommend anyone with a weak digestion to take a probiotic and/or eat probiotic foods as a prophylactic. I used a high grade probiotic throughout tx but had run out after EOT — I would argue there’s a connection.
This isn’t meant to discourage anyone from treating, as it’s just one’s person experience and I had these both of these problems prior to treating. I only document it now because when I was feeling so very low, I desperately searched for another’s similar experience on this forum and elsewhere. I know others have had difficulty post-TX with these meds but I think I’m the only one on this forum who treated with S/R, did NOT have SFX during TX (at least significant SFX) but did so afterwards. So if you’re lurking out there with a similar scenario, know that you’re not alone with this. And of course, it does pass.
On an up note, I’ve been dreaming vividly most nights and have been thru treatment and since then. Prior to treating I rarely ever dreamt. I’ve read that healthy people remember their dreams so I’m choosing to believe that this means I’m still UND. Also, my fingernails are like talons for the first time ever - strong and hard. Another side I had and still have that seems to be incrementally improving is low blood pressure. Many days during tx it was in the 80s/50s - crazy. Now it’s in the 90/60s and occasionally 100/70s.
But enuf about me :) Hope everyone’s rocking’ it in TXland or WAITland or the nirvana, SVRland!
V.
IMO, these meds are generally hard on one’s digestion. I’ve read of many who’ve complained of stomach problems and of those who’ve acquired acid reflux and gastritis AFTER they finished treatment. The 12 weeks of daily doses of ribavarin and sovaldi finally broke me down, slowly but surely. I’ve tried to research the effect of these drugs on the gut but have found little information. So the jury is out there but if the number 2 listed SFX for this protocol is nausea it’s probably a safe bet that this stuff effects your digestive track. To be safe I would recommend anyone with a weak digestion to take a probiotic and/or eat probiotic foods as a prophylactic. I used a high grade probiotic throughout tx but had run out after EOT — I would argue there’s a connection.
This isn’t meant to discourage anyone from treating, as it’s just one’s person experience and I had these both of these problems prior to treating. I only document it now because when I was feeling so very low, I desperately searched for another’s similar experience on this forum and elsewhere. I know others have had difficulty post-TX with these meds but I think I’m the only one on this forum who treated with S/R, did NOT have SFX during TX (at least significant SFX) but did so afterwards. So if you’re lurking out there with a similar scenario, know that you’re not alone with this. And of course, it does pass.
On an up note, I’ve been dreaming vividly most nights and have been thru treatment and since then. Prior to treating I rarely ever dreamt. I’ve read that healthy people remember their dreams so I’m choosing to believe that this means I’m still UND. Also, my fingernails are like talons for the first time ever - strong and hard. Another side I had and still have that seems to be incrementally improving is low blood pressure. Many days during tx it was in the 80s/50s - crazy. Now it’s in the 90/60s and occasionally 100/70s.
But enuf about me :) Hope everyone’s rocking’ it in TXland or WAITland or the nirvana, SVRland!
V.
Pat,
(from another post) Halfway there baby and holding strong!!!! ‘Keep on truckin’ (member the guy with the big shoe? http://www.kotapparel.com/images/categories/kk-251-cat.png
Idyllic,
Hats off to you and your combined treatment time of 72 weeks! Holy cow! I feel like I should say, “Thank you for your service” because you treated with meds that were VERY tough for most and had much lower SVR rates than current ones. And the failure you experienced was the impetus for the pharmaceutical companies to make better meds. In short, you made it possible for me to treat with these kinder gentler drugs - you and all those who treated (and failed) before me and have endured so much more, thank you.
Kim,
Yes, I'm a 2 too. And when I was feeling my worst I kept remembering your posts about how it had taken you 2 months to recover after EOT and it REALLY helped knowing that. So thanks so much for your honestly!
Susan,
If you were to ask your hepatologist if HCV and IBS are related, he/she would tell you ‘no, unless you have cirrhosis’. At this point, I don’t think the two are related either but having a virus obviously taxes your body’s immune system, and potentially it’s ability to function normally so imho there could be an indirect link.
Sorry to hear you are in pain. This illness can make life pretty crumby sometimes. Couple of things about IBS (you may not know already). It’s a diagnosis given for those who have digestive symptoms with no etiology. (So basically when they can find nothing else wrong with you, you are told you have IBS.) No two people seem to have the exact same symptoms. Different things seem to help different people. Probiotics are great but sadly, they are only one piece of an enormous puzzle. It’s not surprising that this one thing did not help you. I’ve never taken drugs for IBS so I cannot help you there. My only advice is that you may want to find an MD who is “open” to alternative medicine to help guide you, as it’s a complicated illness and you may need a doctor who can think out of the AMA box. I’ve tried to educate myself about nutrition and that has helped me. Good luck.
SNewbie
I share some of your guilt about posting negative treatment experiences but , sometimes when you are feeling lowdown it helps immeasurably to know you are not alone. It’s very bonding when you find a kindred spirit and I’ve made incredible friends from foruming because of that. I value the information I get from this forum but I also try to balance what I read here by remembering that everyone brings their unique perspective to a situation which potentially colors their experience markedly.
(from another post) Halfway there baby and holding strong!!!! ‘Keep on truckin’ (member the guy with the big shoe? http://www.kotapparel.com/images/categories/kk-251-cat.png
Idyllic,
Hats off to you and your combined treatment time of 72 weeks! Holy cow! I feel like I should say, “Thank you for your service” because you treated with meds that were VERY tough for most and had much lower SVR rates than current ones. And the failure you experienced was the impetus for the pharmaceutical companies to make better meds. In short, you made it possible for me to treat with these kinder gentler drugs - you and all those who treated (and failed) before me and have endured so much more, thank you.
Kim,
Yes, I'm a 2 too. And when I was feeling my worst I kept remembering your posts about how it had taken you 2 months to recover after EOT and it REALLY helped knowing that. So thanks so much for your honestly!
Susan,
If you were to ask your hepatologist if HCV and IBS are related, he/she would tell you ‘no, unless you have cirrhosis’. At this point, I don’t think the two are related either but having a virus obviously taxes your body’s immune system, and potentially it’s ability to function normally so imho there could be an indirect link.
Sorry to hear you are in pain. This illness can make life pretty crumby sometimes. Couple of things about IBS (you may not know already). It’s a diagnosis given for those who have digestive symptoms with no etiology. (So basically when they can find nothing else wrong with you, you are told you have IBS.) No two people seem to have the exact same symptoms. Different things seem to help different people. Probiotics are great but sadly, they are only one piece of an enormous puzzle. It’s not surprising that this one thing did not help you. I’ve never taken drugs for IBS so I cannot help you there. My only advice is that you may want to find an MD who is “open” to alternative medicine to help guide you, as it’s a complicated illness and you may need a doctor who can think out of the AMA box. I’ve tried to educate myself about nutrition and that has helped me. Good luck.
SNewbie
I share some of your guilt about posting negative treatment experiences but , sometimes when you are feeling lowdown it helps immeasurably to know you are not alone. It’s very bonding when you find a kindred spirit and I’ve made incredible friends from foruming because of that. I value the information I get from this forum but I also try to balance what I read here by remembering that everyone brings their unique perspective to a situation which potentially colors their experience markedly.
I'm reposting this comment I just made because of some of the same issues. Also, I really believe in probiotics, (as Susan400 mentioned) I've taken many and am very satisfied with the results of this one I take I got at Rite-Aid of all places. Hi there! I just wanted to tell you that I'm in the same boat. I am hesitant to post these things because I don't want to add a disincentive to people who are about to treat, etc because I think I'm probably one of those people that have so many variable that I'm not a good generalized example...(if there is such a thing) Because I had a bone marrow transplant due to leukemia two years ago, am in post-menopause, etc etc Am older now that I'm 61. And I'm titrating down from prednisone (that I took for two years!!!) and another immune suppressant. But it's weird, I will be two months out of EOT on the 16th of this month, and I feel worse than I did 3 weeks ago! Because these meds are so new, I don't know that even the docs or Gilead has that much research info on post treatment issues...And as I stipulated, it seems that MOST people treating have a MUCH easier time of it, treating and post treatment than I do. But perhaps there are a few of us that don't have it so great? Because of variables like age, other conditions, gender, etc. I just don't know for sure but I'm waiting to feel better, not worse. So it goes. I had a horrible depression and I usually don't go there either, perhaps it was somewhat because of my expectations. I think all I can do is go with the flow as much as I can. And I asked the nurse to give me a thyroid work up next time I do labs. One thing though, because I feel so s***y, I felt that the virus had come back, as well...Which perhaps isn't true because although my viral load test hasn't come back yet, my liver enzymes were completely normal, 21 and 22...I would think? But of course I don't know...that if the virus had come back they might be higher than that like in days of old when I had the dragon...So I don't know that I'm going to let those thoughts in too much until I get some lab results. I know that's easier said than done.
As for the vertigo, some weeks ago it was horrible! I think because those meds really did a number on the back of my neck for some reason. It was stiff as a board and it made it difficult to move my head from one side to another. I had seen a few other posters mention this stiff neck thing, maybe partly cause by anxiety? I certainly don't know for sure. But the stiffness in my neck did contribute to my dizziness because of an inner ear issue or something. Anyway, I did this exercise and it helped tremendously! Though my neck still hurts a little bit, I just do this and it help a lot, which, in turn, helps with my dizziness and requisite nausea. Perhaps just try it, though I realize this plays out differently on everyone and maybe it's not your issue.
Just maybe for some of us (a very few, from what I see) the withdrawal from these meds is a roller coaster, up and down...and not linear to some great day when we feel better. Just hang in there!!!! I'll be keeping tabs on you since we have similar issues...Best to you!
.....https://www.youtube.com/watch?v=QikUTAmeE0M...
As for the vertigo, some weeks ago it was horrible! I think because those meds really did a number on the back of my neck for some reason. It was stiff as a board and it made it difficult to move my head from one side to another. I had seen a few other posters mention this stiff neck thing, maybe partly cause by anxiety? I certainly don't know for sure. But the stiffness in my neck did contribute to my dizziness because of an inner ear issue or something. Anyway, I did this exercise and it helped tremendously! Though my neck still hurts a little bit, I just do this and it help a lot, which, in turn, helps with my dizziness and requisite nausea. Perhaps just try it, though I realize this plays out differently on everyone and maybe it's not your issue.
Just maybe for some of us (a very few, from what I see) the withdrawal from these meds is a roller coaster, up and down...and not linear to some great day when we feel better. Just hang in there!!!! I'll be keeping tabs on you since we have similar issues...Best to you!
.....https://www.youtube.com/watch?v=QikUTAmeE0M...
This is sort of an embarrassing topic for me, but since you initiated the topic, I will respond. For years, I've had IBS (constipation predominant). This is despite getting plenty of exercise, taking fiber, eating veggies and fruit, etc., etc. In fact a lot of times I feel like the fiber actually makes it worse. I drink plenty of water, so much so that it's made my sodium get low. People who have never experienced the ongoing pain of IBS (constipation), probably make jokes about it, or snicker. But, it is painful. Sometimes it hurts so much in my abdomen, like it is hard to move my body, hurts in my back, hard to breathe. I can't tell if the treatment has made it worse or not. Before that treatment decision was made by me and I knew that the insurance and the PAN foundation were going to cover the Hep C meds.., I had actually considered trying that new drug Linzess (or something like that-not sure on the spelling, but I've heard the commercials). I haven't had the conversation about it yet with my doctor's because the first thing to handle was the Hep C and that problem. Do you happen to know if the Linzess is safe to our livers? Sometimes, I get so tired of having things wrong with me and doctors... I wish the Hep C was my only health concern and then, when I got SVR, I'd be feeling great and be able to feel energetic and alive and be able to get things done, you know? I've never really had the Diar. part of the IBS, so the probiotics haven't really helped me that much either. Basically, since the Sovaldi hasn't been on the market that long-this may not have come up yet, but some of these issues may be being talked about more, as it's been out there and people have been using it. Anyway, it's just one of those things. Susan400
Wow! Can this disease get anymore puzzling. Fortunately think you surpassed the coo coo's nest syndrome as the 7-8 week mark, is almost behind you. I also relate to the looming dark clouds especially when they seemed to hover a little longer then my comfort zone approved of.
If memory serves me right I think we both are in the same geno pool and swimming with the 2s. That's a great place to be, as thus far we've seemed to trend in an upward curve. Lets just keep those positive vibes going as our creative thought processes keep our immune system working in a top notch fashion.
Did alot of reading on dreams and what they represent. Not the foreboding journey that many of us have been led to believe. They actually serve a clever function, as they express fears and anxiety's within our minds that need an escape hatch in order to keep us from going bonkers. If you think about it, your inner turmoil of Sxs are coming to the forefront and helping to create tranquility. So the dream chasers believe!
Keep that healthy spirit aglow and patience a virtuous friend.
The hard parts behind you, and new memories hopefully will soon begin.
Take Care
....Kim
If memory serves me right I think we both are in the same geno pool and swimming with the 2s. That's a great place to be, as thus far we've seemed to trend in an upward curve. Lets just keep those positive vibes going as our creative thought processes keep our immune system working in a top notch fashion.
Did alot of reading on dreams and what they represent. Not the foreboding journey that many of us have been led to believe. They actually serve a clever function, as they express fears and anxiety's within our minds that need an escape hatch in order to keep us from going bonkers. If you think about it, your inner turmoil of Sxs are coming to the forefront and helping to create tranquility. So the dream chasers believe!
Keep that healthy spirit aglow and patience a virtuous friend.
The hard parts behind you, and new memories hopefully will soon begin.
Take Care
....Kim
Have you attained SVR?
I noticed in your Profile you are stage 0?
Good for you for treating when you did and getting rid of this virus.
I don't know much about Sovaldi but I bet there are lots of post EOT threads about it. I treated with Riba 24 weeks once and then 48 weeks another time. Not sure what I attribute to it or the Interferon.
Either way all I can really say is no matter what meds you took it might take time to get your head right or simply back on track. I mean Hepatitis C is a potentially life threatening disease. You see the varying degrees of progression on here and in some cases with no symptoms whatsoever. It looks like you may well have averted all that. That, in itself can be overwhelming. I too was glad to finally get off this merry-go-round and get on with my life and I think I might have experienced a little post treatment depression just from the sheer magnitude of all this.
HCV is becoming a less time consuming disease to treat with less labs, less time sitting around in doctor's offices, less time managing all the c rappy side effects and just by reading your post I am glad you were spared most of that. :)
Just as an aside there are also lots of posts on this forum as well as the Cirrhosis Forum about Probiotics in case you ever decide to try them. I think that your nails are really strong and healthy is a really good sign tho!!
I noticed in your Profile you are stage 0?
Good for you for treating when you did and getting rid of this virus.
I don't know much about Sovaldi but I bet there are lots of post EOT threads about it. I treated with Riba 24 weeks once and then 48 weeks another time. Not sure what I attribute to it or the Interferon.
Either way all I can really say is no matter what meds you took it might take time to get your head right or simply back on track. I mean Hepatitis C is a potentially life threatening disease. You see the varying degrees of progression on here and in some cases with no symptoms whatsoever. It looks like you may well have averted all that. That, in itself can be overwhelming. I too was glad to finally get off this merry-go-round and get on with my life and I think I might have experienced a little post treatment depression just from the sheer magnitude of all this.
HCV is becoming a less time consuming disease to treat with less labs, less time sitting around in doctor's offices, less time managing all the c rappy side effects and just by reading your post I am glad you were spared most of that. :)
Just as an aside there are also lots of posts on this forum as well as the Cirrhosis Forum about Probiotics in case you ever decide to try them. I think that your nails are really strong and healthy is a really good sign tho!!
Wow! Sorry the post tx was so hard. I knew it bothered you buthad no idea it was so severe! I am SO GLAD that you are getting past it, if not as fast as you - or any of us would like!!!
I love the concept of TXland, WAITland, or---special od specia,ls --- SVRland.
You go, girl! I have a good feeling about this. Keep on keeping on : -), and keep on guiding, helping those of us in the first two 'lands'. Pat
I love the concept of TXland, WAITland, or---special od specia,ls --- SVRland.
You go, girl! I have a good feeling about this. Keep on keeping on : -), and keep on guiding, helping those of us in the first two 'lands'. Pat
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