General comments on my treatment so far, Soval/Interf/Riba

[susan400]

I am due for my first viral load blood draw, next Wed. July 16.  I think that the doctor's office may make me wait until I see the doctor on July 31st, to tell me the results from the viral load.  The CMA said he could give me my LFT/CBC info from next, before then, just probably not the viral load.  He is all but promising me that I'll be undetected.  I am trying to soak up his optimism.

Has anybody doing this treatment noticed an increase in sweating?  I'm not talking about sweating from exertion, or from being out in the heat.  And I'm past the menopausal hot flash thing, so that's not it either. But, I can be sitting or sleeping in my air conditioned home and just start sweating like crazy for some unknown reason.  

So far, I haven't been sick to my stomach, but have had some nausea.  LOT'S of very bad fatigue. Way more than I had pre-treatment meds.  And I've noticed an increase in joint pain.  I am drinking plenty of water, so, that's not the issue.  I am not on antidepressants, but only had one or two momentary feelings of blue/sad feeling, just reminded my self to  'do something' , to not just give in to the feeling and that, 'stop that, this is just the meds, don't go there!'.  

Well, that's about all the update for now.

Susan400

[susan400]

I am only on the Sovaldi, and SOC.  I spoke with the drug company on about 3 different occasions to double check to see if they've added anything else to the list of not allowed foods.  Since I live in Florida, and we have local oranges and citrus here (during the citrus season, which right now it's not anyway), I would get local, why Spain, that wouldn't make any sense to me.  Anyway, I like to put lemon juice in my hot tea with honey.  It's one of the few comforts I enjoy that I feel like I don't want to give up.  I feel like I've had to give up alot of things I used to enjoy in life.  When I was younger, I could get in the sun without having this skin issue.., which I was unfortunate enough to get from one of the many interferon rounds and supposedly, I'm stuck with it.  I used to be able to drink, 19 years ago, before Hep C.  I used to not have to worry about every single thing that I ingested and quite frankly, it was way less stressful.  So, I get a bit grouchy if I find out that I might have to give up another thing I enjoy.  I am not doing the grapefruit right now or the oranges because it's not something that is going to be good, when I'm on the treatment, also, they aren't in season anyway.  I very occasionally will drink a small glass of OJ, because I like it, but it's the FL OJ, natural, not preservatives, etc.  I asked those Gilead people, are there any other medications or foods that have recently been added to the list for the (SOVALDI), .., to avoid list.  She said nothing else new besides the previously listed ones, which my doctor's office discussed with me and I'm not on any of those medications.  I asked the lady, I take other medications besides the HEP C meds, (not any that are on the 'to avoid' list), I said, I've been moving the timing of them to the middle of the day only, to avoid it interfering with my Sovaldi or the Riba.  I asked her, it this a good idea, will this plan be okay?  I told her how I take my Sovaldi at 7 am w/the 3 Riba and my other Riba (2) at 7 pm.  I told her that I take my other meds in the middle of the day to avoid any medications conflicting.  She reassured me that the Sovaldi is absorbed very fast and it's 'in my system in 1/2 hr with it's peak in 2 hrs and that as long as the meds I'm taking aren't on the avoid list that it's perfectly fine to do it this way'.  So, I feel like I want to just relax and not worry about this stuff.  Treatment is hard enough without having to question everything I've already been doing for almost 4 wks.  Anyway, I do appreciate all advice and I know it's only meant to be helpful.  I know you're all in my corner and want to see me clear.  Just as I want to see you all clear.  I don't usually eat fried foods, because they don't agree with me, even when I'm not doing treatment.  But, I do eat other regular foods, not just a BRAT diet, because I wouldn't be able to live on a 12 wk BRAT diet.  I work out like 6 days a week, and I need enough energy to keep from passing out.  But, I must be doing something right because my LFT's improved drastically in one week.  All of my white cells/neutropils-though lower than normal-haven't dropped any lower and not low enough to required Neupogen.  My hemoglobin and Red Blood cells are stable and my platelets are stable.  Other than the slight nausea w/o throwing up, a huge amount of fatigue and the sweats, I'm not really doing that bad.  I will be GLAD though, when I'm clear and this next 8 wks are done with!  Wed. is week 4 viral load...   Susan400

[Livelife777]

Hi there.   Basically you want to eat healthy, not spicy, protein, and limit fried foods.  I don't know what treatment you will be starting, but we are all mentioning foods that keep you from feeling nauseas.   It's really called the
"Brat Diet".   You are under no restrictions that I'm aware of other then citrus variety if on Oyslio.  When you get your meds, you should ask if there are any contraindications.
When your ready to get started you can post a question regarding nutrition and other questions.   Also, at the top of this page you can type in the search box any questions or concerns, and you will find answers to just about everything.
Good luck starting treatment and take care.      ...Kim..

[hepc4Sandi]

Yes, Seville oranges, usually found in orange marmalade. I would also avoid mango, as mango interacts with many medications, though I don't there was any mention in the literature I have read.

[patra_]

Ther are two citrus fruits not allowed - the grapefruit and ,I think, Seville Oranges.  May not be Secille, may be another S city from Spain, I will try to find my med Sxs sheet, but someone else might knoww.  I have no idea why - it's just in the literature I got wthe Solvadi.  Pat

[susan400]

Thanks everybody for your responses.  I don't know about the Ginger Ale, but I've been drinking some decaf Ginger tea, which has the ginger in it.  I think I like the idea of the tea better, for me, because it has no carbonation and then, I don't have to worry about getting it flat.  Somebody on these boards mentioned something about not drinking herbal teas.  I don't know who said that, but unless it's some kind of a wacko out there type of tea..., hot decaf tea is allowed to be used on treatment.  As long as you're not taken your meds with it, things like decaf green tea (which actually is VERY healthy for your body), normal decaf Earl Gray Tea (which is a normal black tea), and tea like a ginger tea, are all very healthy and not, disallowed on treatment.  With that being said, I would make sure it's DECAF.  And I'm also talking about just the Sovaldi, Riba, Interferon and NOT Olyssio. I can't speak on Olyssio because I am not on that and have no idea what the recommendations are for it.  Just like somebody said, no citrus.  There is no contraindications for avoiding citrus on these drugs, except for grapefruit juice and I would not do that on treatment because grapefruit juice can interfere with medications.  Once again, I'm not talking about Olyssio.  I have no idea whether on Olyssio-that you would in fact have to avoid citrus.  But, with what I'm taking, if I want to drink Orange Juice, or eat Pineapple, or use Lemon Juice, there is no reason that I have to avoid these things.  The only time I've had any nausea symptoms seems to be related to the mornings, when I've gone all those hours w/o any food in my system.  I've noticed that when I first get up before my meds even, I feel nauseous slightly, more so on the days after my shot though.  I think that the Ginger Ale is a great idea for people who would prefer the flat Ginger Ale.   I've noticed the sweating seems to happen in the late afternoon/early evening time frame.  Weird.  I take my Sovaldi and 3 Riba at 7 am time frame and the 2 Riba at 7 pm, so this sweating thing is strange.  Even though I've done many treatments, they are not always the same side effects, because some of the treatments have been involving different drugs, particularly like when I was in the clinical trials. And this is the first treatment I've ever done with Sovaldi, or with a polymerase inhibitor.  I have noticed that with my treatment experience, I have found out that even though I don't feel like it, the exercise helps me in so many aspects, as in with sleep, with depression, which my overall achy-ness. Well that's all for now.  Thanks again, friends and Happy SVR to you all!  Susan400

[beckland]

Hi, i will be starting tx for the first time in August and i was wondering how you know what to eat while on tx? I see you mentioned ginger ale and small meals.. is there a site that explains it? Thanks

[Livelife777]

Sounds like your doing great after how many treatments?????  No really, it's not as horrific as it seems.  OMG, the sweating.  What a lovely side effect especially when I'm on my way out with a hot date!
Was told that with treatment your body temp rises. Noticed mine was 99 or so on occasion and thought GREAT, I'm sick.  Sweating can be caused by anxiety as well, so I do think we are all a little tense on these meds.  
Think your an old pro with treating (10Xs?) but this is what helped my nausea.  Lottsa small meals, protein packed, with shots of ginger ale.  They say its better to drink it flat, so maybe get a big bottle and keep it around opened.  If you want to get real technical, small sips, and no straws.   I had
2 children, what can I say.
Think with your treatment you are going all the way with the added Interferon.
With your prior history, I now believe that you will finally get to grab the Brass
Ring.  Please do savor those three little letters.....UND.
...Kim..

[patra_]

I, too, understand your feelings!  I had my first Labs Mon, 7-7-14.  My appt with the dr is the 16th - the day of you draw.  As to the sweating.  Those  whatever-they-ares, simply warm me up.  I am so cold natured that I find myself a little warmer that a normal person would feel on normal activity in a/c.  I have been taking my temp when they happen and I even achieved 98.6 one day. -  my 'normal' is 97.6 and going below that is not unheard of.  funny how it affects each of us the same but differently (if that makes any sense).

Hang in there - hope we all meet at SVR soon and very soon!  Pat

[sue4hula]

Hi there!  I understand your feelings!  I wanted to know and was scared to know!  My doctors main focus was the LFT/CBC improvement as well.  He explained the same same thing to me about the "undetected" result.  I think they are doing the right thing by making sure we understand the meds are what is doing the trick at this point in our treatment.  But I gotta tell you, and I know you know what I'm saying, but hearing "undetected" for the first time ever is still a powerful experience!  

I have a Comprehensive Metabolic panel and CBC this Friday which is the end of week 8 for me.  I'm apprehensive every time i go to the lab.  I'm fearful of dose reduction or worse.  I think it is a form of Post Traumatic Stress.  Seriously!  

I felt my worst the end of week 4 through week 5.  Since that time, I must say I feel pretty good except the few days after my shot.  I also went to Acupuncture a couple of times and for me, it really helps my fatigue and general well being.  

I noticed my emotions were all over the place the first 6 weeks as well.  Still a bit of a roller coaster, but better now.  One day at a time....  My doc started me on  Celexa a month before treatment so that helps me.

I totally get the sweating thing!  It happens to me too!  It's an itchy sweat too.  I'm trying to look at it like my body burning out the virus.   But ugh!!!

I have had more low back pain.  It's what first took me to the acupuncturist.  It was like a flu in my back and lasted about 10 days. It still aches up at times.

I hope you get a great report!  Good remembering that it's the meds talking and not the Hep dragon!  
Take care....
Be well!
Sue