I'm not sure what's what?

[Dbzc2]

Well, I have actually been feeling progressively worse over the past two weeks and am not real sure what to do--paralyzed by fear, might be a good description for where I am?

Today is Friday, so I'll think about what to do. My big, did S&O work test is Sep 27th.  Thing is, if feeling worse, fatigue and pain, means stupid virus is back, I don't know what the work up is and how much time is needed for Round Two?

So, I do know several of you are waiting on Round Two which is slated for October (next month).  Have any of you guys had to start anew with tests and such for round 2 of the new sovaldi  drug?  I'm trying to figure out if I should wait til the 27th for the SVR test post 3 months, or call my liver doc and let them know all is not so great?

A little background:  I did just start teaching at the university again. I have three classes, 2 face to face and one online (personally, the online takes more work!).  Anyway this is week two and after meeting my Tues class, I came straight home and went right to bed! My fatigue has taken over, joint pain has increased and vertigo has gotten much much worse (stress will do that).

Can anybody else tell me how they've felt with a SVR versus failure to sustain?  If there's an involved work up for around 2 (if what I think is happening, virus back), then sooner rather than later might be best. If it's all up in the air, then waiting for the official three month test seems to be the way to go.  I haven't even worked up the nerve to call my doctor. I hate being a paranoid bother, and it seems this whole process of "We don't know that much," from docs is so frustrating.  Anyway, community support? Weigh in? Thanks so much! Dbzc

I posted this on another forum b/c I forgot which one I typically post on? Guess the brain fog stuff is coming back too?

[hepcandme]

"Will we ever have a "normal" again?  That question nags at me the most. My doc said no because of cirrhosis."

that question bothers me too

I do so want to start treatment just as soon as I can but wonder how much better one feels if looking at living with cirrhosis

had my hair styled today and the stylist said

Hope you feel better!

I had not told her I was sick

Sigh...

[hoping4cure]

Dbzc2, I was absolutely sure the virus was back because I was feeling so bad I had my VL checked at two EOT on the S/O combo. Came back undetected at two weeks, four weeks, seven weeks, twelve and now fourteen. Did the same thing gained weight on treatment felt really bad after.

Sounds like your doc is giving you good advice by taking one issue at a time. Real easy to overwhelm yourself. I'm having an ultrasound done on Monday and should have the results by five that same day. I'll post the results because my main concern is decompensation kicking in now.

Dialectical behavior therapy is primarily used for treating people that have BPD but is can be used by just about anyone to help with regulating emotions and not feel so overwhelmed. There's a real good book called the dialectical behavior therapy skills workbook that you can checkout on Amazon. Hang in there, believe me I was feeling the same way but things are getting better.

[bassetgirl]

I finished treatment July 30th, no side effects during treatment except fatigue- this is my fifth week past EOT and I've had a sore stiff neck three times so far- have been using a heating pad and trying to keep moving. Will be interested to see how this progresses and what happens to others who are experiencing this- hoping it's short lived.

[Dbzc2]

That nagging pain around the liver came back a couple of weeks ago? My alt and sat have been fairly low even in the midst of portal hypertension? Mt docs told me a long time ago that LFTs could change hour by hour, and hormones or stress could affect them? Go figure!

My platelets are slightly elevated and in the midst of treatment my alk phos went up and up....and was still elevated despite non detected virus? They checked  my calcium and fibrogen and normal. I do not have a gall bladder so no bile issues.  Last I heard was to check bones as bane cancer does this...that's to happen after the virus is dealt with.  I'm to have a brain MRI for the trauma to ear that caused my vertigo and weird eyesight problems.  I can't drive? All of this happened whilst on S&O.  I can't handle video games or fast moving stuff--never an issue before?  I forgot the disease that shows up in the brain for that?  As my PCP said, one disease at a time and since hep c was probably the culprit to many problems, that's number 1.

A couple of weeks ago I noticed water retention. Super full feeling and uncomfortable? Then when the fatigue hit like a brick wall this past Tuesday I began to worry.  Having no info and nothing to go on is really scary. I hate sounding like a hypochondriac!  I sure feel like one!  Hence my just pondering all this.  So, after I posted yesterday I realized I was being stupid.  I called doc, mentioned some of the stuff and then rush rush to the lab.

I really do not know what to think?  I know my thinking is a bit wonky again (like before treatment), but perhaps getting worse?  I follow the "liver diet" and am typically healthy.  I just don't feel as good as I did four to six weeks post treatment. And here we go again, the roller coaster of is it hep c? Meds? Left over side effects?  I truly am clueless.  So, like Lynn, it's a matter of waiting for results. Ick. This is going to be a long weekend!  

Will we ever have a "normal" again?  That question nags at me the most. My doc said no because of cirrhosis. I'm ok with most all of that, it's my thinking and memory...I don't know what to think about that? (Haha a rhetorical literal oxymoronic question all in one!) that's a genuine first! Sometimes, I think that's what hep c is...a mash-up of confusion!  What a weird disease! Even trying to get better is confusing.  Oh well, I guess this post wins me most baffling when it comes to hep c, treatment, post treatment and the future.

So, for those of you on treatment, yes, there's pain, confusion, weight gain, insomnia, but there's also a a really big chance of getting rid of the virus!  For those of us who might have to do it again, I heard 98% to 100% SVR!  The only thing nobody knows is the long term....the drugs are so new and some not even out of experimental phases a, that there is no info for long term consequences.....that's what we'll be posting about in a couple of years...that and getting old!  :  )

I forgot to mention rambling is another side effect!  Good lord! :  )

Best, dbz

Ps.  Riddles or word games to pass the time until results?

[Sovaldi13Newbie]

Liked your post! And still and all, I would have treated again with this Sovaldi and Olysio in a heartbeat. As bad as these symptoms are from the withdrawal, I'll take them over worsening liver damage...and all the creepy, little and big symptoms over the disease itself. It's WONDERFUL not having that nagging pain around the liver that is always reminding you, you have it. Maybe some know this one, many doctor's said it was impossible until some doctors themselves had it...Now many docs are recognizing it. And as bad (or good) as this treatment is...It's WAY better than the old SOC... People treating for almost a year or more and the withdrawals from that I heard were horrible in comparison. I keep telling myself I'm lucky to have gotten this as uncomfortable as it may be...

[marivirginia]

Currently I am on S & O, 5th week. I have the joint pain now. Sometimes it feels like someone is hammering nails in my legs and knees. I have been reading about these after treatment sides. It appears the withdrawal symptoms are similar in many people. I think, but really don't know, that after time, some of the symptoms will dissipate. It doesn't necessarily mean that you've relapsed. It may be a difficult withdrawal instead.

Hang in there everyone.

[Sovaldi13Newbie]

My platelets were normal before this TX and now they are 112, guess that's no cause for alarm. But seriously, I don't post all the time, but I do read. I have read of many people going SVR who still had pain in their liver, all kind of side effects and old symptoms from the Hep C. They were really surprised when they ended up having an SVR...So I'm going to just try to put those thoughts away until I get my labs back...and I just did not even two month viral load so I know I have a way to go yet. Completely agree with the PTSD and that's why I meditate a lot, having had cancer, bone marrow transplant, and this...But I'm also grateful to still be here, and grateful for these boards so we can share our experiences as patients...because God knows most medical professionals have anathema in discussing patient "symptoms" these boards help A LOT with that info, feedback, etc. Plus it's great support. Thanks.

[flyinlynn]

Hi

I called my doctors office today to see if they had my LFT and CBC back yet. They said 12 week EOT viral load should be back probably Monday or Tuesday. I haven't tested since I ended treatment so obviously anxious to hear anything.

My LF went into normal on treat for the 1st time since I was diagnosed with hep c. So far I heard my AST is still in normal range but my ALT was elevated again although not as high as before treatment. My platelet count is up a little to 98 and it had been running between 80- 90.

Kinda a mixed bag of test results at the moment. Hoping for good news next week.

Best to everyone
Lynn

[Dbzc2]

Well, I decided to call the doctor and they had me go immediately to the lab to get the viral load test done.  Now I really do not know what to think.  I gained weight on those drugs, could not think, lost a sense of myself--which was really weird! The pain in my back, neck and hips was paralyzingly every morning.  The pharmacy rn for sovaldi, when asked about the side effects said, "Hell yes there are side effects!"  As she explained it, some could be debilitating.  Hence, if I have to do this again, I'm a bit freaked! I know I will essentially be a vegetable for 12 weeks!  Good news 2nd round is supposed to work, with 98% cure rate.  So, we'll see. I'll get a call Monday or Tuesday to find out if I'm on for round 2, or have a SVR but just do not feel great?  I also found out any side effects from hep c before treatment are permanent but should not get worse.  I will forever more be followed for the portal hypertension and liver cancer.

I can deal with all that.  Not being able to do a job that I enjoy will be crushing!  Btw. Depression is another side effect to the medical roller coaster! I found out some of us will react from PTSD just from dealing with the life and death roller coaster ride we've been on.  My PCP called it a true mind duck.  But used the letter f. I agreed.  I am extremely grateful, but feel like my emotions and ideas about life and death are all scrambled up.  So for me, when I get to some sort of medical stability, it will be medical PTSD therapy!

Thanks so much! I'll post when I get THE news!  Thanks too for the other comments! I'm sorry I posted on two forums!  Brain fog and stress!  Eeeek! And then I just have to laugh and acknowledge I'll be a ditz from here out!

Best, debe

[Sovaldi13Newbie]

Here's the exercise...just a few minutes to do.

...https://www.youtube.com/watch?v=QikUTAmeE0M...

[Livelife777]

Hi.  I posted on the Hep C post Tx forum with my thoughts.   I hope that you get some answers and that Tx has worked.
Take Care
....Kim

[Sovaldi13Newbie]

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!