Hep C Discussion Forum

Scott18927 · Senior Member

RE: The Sovaldi-Riba Train is now boarding

Gracie · Guru

The RIBA can definitely cause mood swings, and also low hemoglobin which can make you feel weak and tired. the exercise might be too much, so just take shorter walks unless your up to it. Your body needs all it's reserves to fight this virus. The Bloodwork every two weeks is a pain. I remember the incevik triple having to go every week for blood work and being on pins and needles as every week they wanted me to decrease something. That was a tough treatment - sacked my energy, I was white as a ghost and many people mentioned it. This time around nobody has so that's a good thing. I hope you continue to improve and find something to keep you occupied for the duration. Maybe get some new books to read, or take an on line course. There are many free on line courses with many different topics. I'm taking one now on twitter which seems weird, but there is a lot it can do for businesses.

Scott18927 · Senior Member

IDK, Those Oreos, have saved my mood a few days. I am trying to eat healthy but sometimes that sugar is the only thing that cheers me up.

Today is day 14 for me or T-70, I felt real good this morning after a Bronco win (Being that I am from Colorado). I went out and walked a mile and a half and then went to go get some light bulbs at the store and look at crock pots for easy dinners. I was in the aisle at the store and I was hit with a sudden faint feeling. I got all hot and couldn't remember what I was there for (only momentarily), but I had to get out of there. Been on the couch ever since. Juggling this exercise and fatigue can be quite hard. I know the exercise is good and I am not going to stop. I guess, I just need to limit it to a mile next time or three-quarters. Or, I just continue and do the exercise when I feel good and come right home for the crash. And maybe it was a fluke.

I was in my early 20's when I tried interferon the first time with Stage 1 Fibrosis. I don't remember the fatigue with that because I was so depressed that I couldn't think about anything else. Same with the second time. It hit me like a freight train. But this Sov/Rib combo is new to me. 20 years later and F3, it is causing mood swings, and I do feel irritated because I can find interest in anything but it doesn't feel like lie in the bed all day depression. Over all I am happy but restless. I guess that what is hard for me is not having the energy or interests, but my brain is so active. So I don't want to lay around and I want to find something to do but just can't.

Tomorrow will be different, if not, the next day might be.

Blood Tests tomorrow. Only CBC, no viral load. Tomorrow will be 2 weeks or the 15 day. They just want to make sure the Riba is not jacking my red blood cell count up. That is exciting. Every 2 weeks, I have to get a blood test. That is a mile marker that I strive for.

Linuxter · Guru

LOL ... shame on you SF, I've got to call ya out on that one ... that's cheatin' in the Smoothie Dept and you know it ...

(Well, maybe on very special occasions ...) LOL

Dave

Shadowfax · Guru

Linuxter wrote:
Hey Oh Gracie,
Brrrr is right! Ya that's a bit chilly, for sure. Good day to stay home by the fire. If it were me, I'd go for the Oreo's instead of the Ice Cream today, lol.
Dave

Ice cream is year round whether it's hot and humid or freezing outside. Ice cream with Oreo's on the side sounds good ... Thinking Oreo Cookie Blizzard Smoothie.

Linuxter · Guru

... Opps, sorry Gracie, I'd blame it on Brain Fog but don't really seem to have much of that today.

Dave

wmlj1960 · Moderator

No tempting allowed on the forum. lol biggrin

Linuxter · Guru

Hey Oh Gracie,

Brrrr is right! Ya that's a bit chilly, for sure. Good day to stay home by the fire. If it were me, I'd go for the Oreo's instead of the Ice Cream today, lol.

Dave

Gracie · Guru

My saviour was ice cream. (Hanging head in shame)... Lol. We do what we can to get through it and we do get through it! The farther I went! the more apparent it became that the sides were transient coming and going at will. None lasted throughout. Have a great day people. Minus 17 here... Brrrr (Celsius).

Linuxter · Guru

Day 19

No apparent sides today - Woot!

Downed lots of H2O and a couple of Greenies first thing today and didn't feel anything out of the ordinary other than perhaps a little shortness of breath on occasion.

Dave

Sydhanrahan · Guru

Hi Scott,

one of the issues which came up with my 8 week check up was depression. I already take quite a low dose of Pristic and the dr said that Riba interferes with brain chemicals more for some people than others. Anyway i doubled the dose yesterday and today and already feel much better. I know it's horses for courses but that drug is messing with our heads. I too have had the total lack of motivation.

Its not surprising really given the hypo state of anxiety you go into for all sorts of reasons before treatment and then while you're settling into the treatment the Riba begins it work.

Im sure we will get through this. How lucky are we that the treatment is available now compared to all those who endured the slow decline of liver failure before these new drugs??

how lucky to have found this forum where people seem to really care because of their own heartfelt experience??? How lucky to have to the Mallanis and Malcolms who write from experience and a wealth of knowledge.

Stay strong.

Syd.

Linuxter · Guru

Just another day in Ribaville:

If you don't like the weather in New England now, just wait a few minutes. -- Mark Twain

Same thing goes with these friggin' Side Effects ... or so it seems.

Something new to look forward to with the blink of an eye ... and then, just as soon as you put your finger on it ... it's gone.

Strange but True,

Dave

p.s. It's pretty remarkable when you think about it, it's just the system's way of ironing out what's going on and compensating.

Power To the Riba! Kick some dragon ass!!

Linuxter · Guru

Try 4-7-8 Yoga Breathing

1) Place the tip of your tongue on the back of your two front teeth

2) Inhale through your nose for a count of four

3) Hold your breath for a count of seven

4) Exhale out through your mouth for a count of eight

Here's a Demo

Do this exercise twice daily throughout Tx.

Then listen to some Pink Floyd (per Tigs suggestion) using Headphones ... and crank it up!

That'll fix ya right up Scott

Dave

p.s. Oh, and Oatmeal is GREAT! Gives me energy throughout the day and it helps with bad and good cholesterols. I like it too.

-- Edited by Linuxter on Sunday 7th of February 2016 01:22:05 AM

Gracie · Guru

I had some blah days too Scott. Just know they do pass. It just gets overwhelming sometimes having to deal with it all. Even for me post treatment some days I just get blah. These drugs are powerful so are bound to have an effect on our moods. I was treating myself with sweets since I'm an emotional eater. Went through a lot of cookies, and tons of ice cream. Don't know if it helped my mood, but it helped my waistline. The time goes quick, and before you know it, you'll be on the other side looking back.

Scott18927 · Senior Member

I picked up some Oat Meal. I like that. That should have enough fiber.

I am in a funk today. I have not interest in anything. The last 45 minutes, I paced around my place trying to find something to do but nothing is interesting. I have gone to the store 4 times today to just get out. TV, movies, and internet not interesting me. I only need to stay up 2 more hours so I am not up at 3am, and then it is bed time and tomorrow is a new day. Hopefully brain is different. I even tried a little exercise to get the dopamine flowing and other feel good chemicals out. I did feel good while doing it but as soon as I was done, I am back to BLAH.

It is very frustrating. Doctor's make this sound like a cake walk. Finished day 12, tomorrow is a new day. I am going to get up on the other side of the bed tomorrow and see if that changes anything.

Thanks for listening.

Linuxter · Guru

Thanks Mike,

You fine folks who stand before me have set some excellent examples of "Staying Positive", my goal is only to try to live up to some of those fine examples that y'all have provided ... and I get to reap the benefit of an easier trip ... so Thanks Pioneers for paving the way ... ya done good!

Dave

wmlj1960 · Moderator

Linuxter wrote:

I'm thinking a positive attitude seems to help also, to stay there I'm looking at the big picture ... SVR and on to HCV-FREE livin'!

That's will help you more than anything else. It's not easy some days with 'ribacrap' steady beating on you but if you keep that big picture in your sights you'll get through this much easier. Keep it up Dave. You got this!

Linuxter · Guru

Scott,

What you need is fiber, I always have a box of Cracklin Oat Bran or some Raisin Bran in the cupboard for just such the occasion, The Oat Bran is best and it will solve the problem.

Even better is to just eat lots of greens and roughage on a regular basis, they will keep you regular.

Try and deal with it through diet if you can.

Hi SF,

Yes, Day 18 ... (does that actually qualify me as a Vet ... I know I've been getting dog tired but that's a horse of a different color)

Just another fine day in Ribaville

Latest development was waking up with what I would describe as a charlie horse above my right shoulder blade, my neck and shoulders have been tense lately and is no doubt from the Riba. All else goes fine though and moving around some seems to be helping the knot in back. Trying not to take an Ibu if possible. Trying to heed my own advice and drink LOTS of WATER (Dave!).

I had a little shortness of breath as I was trying to fall asleep last night, I just drank more water which seemed to help ... but, of course, that caused another side effect which, as you can imagine, was having to go to the bathroom just as I was about to drift off to slumber land.

As Gilda used to say "It's always something."

Ya know, I expected side effects from the Riba but truth be told, they've all been very manageable. A bit of an annoyance at times but all quite manageable and don't seem to last very long.

I'm thinking a positive attitude seems to help also, to stay there I'm looking at the big picture ... SVR and on to HCV-FREE livin'!

So Beware dragon ... You're Goin' Down!!

Dave

-- Edited by Linuxter on Saturday 6th of February 2016 09:42:08 PM

Shadowfax · Guru

Hi Scott,

I hope you get feeling better quickly and the headaches are transient. Regarding Metamucil; I asked my pharmacist about that in particular. I do take the sugar free kind and yes it's Pysllium Fibre as you know. I was told that there are no notes regarding it or to avoid it. That being said, I know because of the way it works it's best to not take it within at least 2 hours of other medications so there is no interference or change in digestion of the meds. We agreed if I should take it that I would 4 hours apart from the meds just like an antacid.

Please ask your pharmacist and or doctor remembering the pharmacist knows WAY more than the doctor about your medication and interactions since they deal with it all the time. The doctor knows what is on the labels. Still, ask to be safe rather than sorry.

** Day 18 Dave! You're a veteran already!

Gracie · Guru

I had the headaches during treatment. Tylenol took the edge off for sure and it never lasted past a day or so. Glad to report after treatment they seemed to have subsided. Hang in there guys... small battles in a big war that your winning!

Scott18927 · Senior Member

I am F3 also. I used to take massive amounts of Ibuprofen for arthritis. Up to 2400 mg per day for years. They don't want me to take it unless I absolutely have to. I also picked up some greens for some smoothies.

Well, today I am really down. I don't know if it is because of the meds or because it is super bowl weekend and I have lots of friends throwing parties. I am not going to go to any because I don't want to put myself in those situations. it Just sucks. I have been sober for over a year. But still miss the life style especially when there are holidays or events. Today seems about 10 times worse though. Even got invited to the Super Bowl. I had to turn that down too.

I feel like just holding up in my place until the weekend is over. But later today, I am going to force myself to get out and go for a good hike with my dog. Then tomorrow, I am going to do some work on my car to occupy my time. Then I am going to make something special for the game, some hot wings or something. This is the plan anyway. Sometimes when I get like this, I have no motivation to make myself do any of what I just said. I just watch TV and lay on the couch.

I also was very constipated today. Not sure what to take for that. Someone told Metamucil but doctor said no supplements and no herbals without permission. Not sure if Fiber counts or if it will even help. I know that the green smoothies and more water will help though.

GO BRONCOS!!

Linuxter · Guru

Hi Scott,

No doubt you have already but Drink More Water, especially when the tension starts creeping in.

I know exactly what you mean though, I'm getting them too. If i don't pound down at least 20+ oz of water right then it seems to get worse. I've been using Ibuprofen since it's broken down in the Kidneys but if your Dr says Tylenol, that's what you should take. I'm not sure what stage fibrosis you are so that may make a difference. Actually I'm stage 3 (F3) and my Dr said I could take either as long as I don't go over the Daily Max printed on the bottle. I never take more than 2 pills at a time and a max of 4 pills per day (that's with the Ibuprofen), don't like taking any of them but if it helps stave off a headache, I'm goin' for it.

I also found that along with some greens (to help carry the toxins away) I'll get a headache if I don't eat some protein also (like <20 almonds or slice of cheese).

I think Water and Nutrition really help with the headache as well as other sides.

Sorry to hear that they're hittin' ya, try some of the things above, if that doesn't help a hot shower on the back of the neck and/ or cold compress on the back of the neck may help (sometimes one then the other can help).

Later,

Dave

Scott18927 · Senior Member

I think the headaches are starting to hit me. Yesterday, it was just kind of there. More annoying than anything. So just went to sleep. Today, I have had a bad one all day. My doctor's told me to actually take Tylenol. It goes against everything I've been told in the past but they are the experts.

So I took one today and didn't even help it. Looks like early bed tonight. When I am sleeping, I don't have the headache.

Tonight I finished my 11th day.

Good Job Dave on day 17. We are getting there. The past 11 days for me have flown by. I just hope this headache is temporary and doesn't become a daily thing.

Shadowfax · Guru

17 days!

It just seems like yesterday to us as we follow your journey. You seem to be doing great and I know you will continue to do so. You have a great arsenal of all the things you need to make this easier. I am learning much from following you this closely ... Do I hear a siren ... No I am not a stalker smile

Each day closer to slaying this dragon. Good job

wmlj1960 · Moderator

That turtle passes this snail every day and I just laugh and say "let me tell you the story about the 'The Tortoise and the Snail'". lol It's not about how much exercise you get but rather that you are doing what you can comfortably do. A slow mile and a half works fine for me. You're doing great Dave! Easy on the Ibu's and keep up the good work! smile

-- Edited by wmlj1960 on Saturday 6th of February 2016 01:32:14 AM

Linuxter · Guru

Day 17

All is well, went for a mile and a half walk today since the sun was out.

I walked about 1/3 of my normal pace so a turtle could have beat me but seemed to do OK and feel a little better now.

Took everything I had to get myself dressed and ready to go ... but once moving it wasn't bad.

Brain fog really hit as I was walking so I had to pay pretty close attention to keep my distance from the roadway ...

... another surprising development is that my sense of smell improved about 4 fold, I could smell every diesel within 10 miles ... as well more pleasant things. This morning I was totally craving a Butterfinger which is odd because I don't normally like them much, had to stop and pick one up at the minute mart along the way.

Feel a headache coming on so I probably need to down some extra water and take a couple Ibu's.

Dave

Linuxter · Guru

Yes, Netflix is a given ... that's all we watch now, got rid of cable, dish all that stuff (stuff is the nice word) ... got very tired of paying premium price just to watch 3 channels and then having to watch ads for 15 out of every 30 min ... Forgetaboutit!

Yup, great distraction ... love it.

Dave

Tig · Admin

You forgot one:

Netflix Basic is $10 bucks per month. Nothing better than getting lost in a good movie, commercial free for that price! When you can't get your mind off of things, let Hollyweird take you away, lol biggrin

Linuxter · Guru

Thank You Jill and SF ... it's appreciated!

Nothing unmanageable, I do find myself putting out spot fires from time to time (i.e. when a side crops up I use some of the tools I've learned here to lessen or alleviate them). What's great is that the tools work ... so thanks to all who've gone this route and found ways to help manage the Riba yuck.

Tools that I'm using:

1) Water - Lots of it.

2) Nutrition - Greens to take away the toxins, fruits and other vegies for minerals/ vitamins, nuts and meat and/ or fish for protein

3) Ibuprofen - As needed for headache or tight neck/ shoulders

4) Taking it easy - Allowing the body to take a break as needed (being aware of the potential for anemia)

5) Sleep - Getting plenty of it

6) Support - Find a good support group (Like Hepcfriends, of course).

7) Avoiding making big and/ or important decisions as needed - If the brain fog sets in, stay home, relax and go with the flow.

I'm sure I've missed some but these things are helping make the trip easier.

Dave

-- Edited by Linuxter on Friday 5th of February 2016 07:56:21 PM

Shadowfax · Guru

Hi Dave,

We are here with you and watching your progress daily. Still hoping the symptoms will subside sooner rather than later or you can tolerate them well. Dragons be gone!

Cinnamon Girl · Guru

Hi Dave, it definitely sounds like the riba is kicking in, I remember when I was on tx I started noticing a cough and shortness of breath within the first 3 weeks. It`s all par for the course, so take it easy when you need do and just go with the flow.. it won`t last forever!

Keep us updated... smile

Linuxter · Guru

Thanks All!

RC, boy am I glad I quit smoking over a year ago, I'm sure I'd be doing a lot worse if I hadn't.

My 4wk labs are coming up in a little less than two wks so they'll test my RBC for sure. It'll be interesting seeing what they say.

Ya, I'm just pacing myself and not running any races through this.

Thanks again all,

Dave

robertsamx · Guru

Dave, I found that by the end of the day,just walking from one room to the other I was out of breath, as you now know-the RIBA drops your red blood count resulting in fatigue and shortness of breath. Take it easy and hang in there. RC

Tig · Admin

JimmyK · Guru

And this coming from the guy that brought me the "nuts".

LOL Family.

Tig · Admin

Don't do it Dave!!! They have rooms for people that talk like that. They've got funny locks on them and all the walls are covered with blue padding. Nurse comes around every so often and gives you some juice and a cookie. Next thing you remember, two weeks have gone by. Shhhh, they might be listening!

Hang in there buddy, you're homing in on two weeks. Great progress is already being made!

Hydrate......

Linuxter · Guru

Thank you all for the encouragement, it's appreciated!

I'm doing good, just in the heat of battle right now ... I WILL persevere!

Sure is great having you folks around, let me tell ya ... this place is a blessing, for sure!

I suppose I'd better not but I was thinkin' about takin' a few pot shots at that durn drone ... lol.

I can see the headlines now "Wild Man Claims Dragon Slaying Drones Attacking!"

Dave

-- Edited by Linuxter on Friday 5th of February 2016 02:06:05 AM

JimmyK · Guru

Greeting Brother Dave,

The Riba is in fact rather hard on some and that definitely includes me. Pre treatment my consistent bench, albeit using a Bow-flex Extreme consisted of reps at 410 of 25 x 8 sets. That was 10/14/15.

Today 02/04/16 I can get maybe 6 reps in x 3 sets.

I lost 25 lbs on treatment and that was somewhere in the neighborhood of 10% mass. In 11 weeks mind you so yes significant.

Now on recovery mode yet I have a new series of 16 weeks of that stuff ahead of me.

But you know what? Dragon slaying is a tiresome task. Not all are up for it. But the goal reached is the wreath of the victor and well worth the effort toils and turmoils.

If it were an easy thing to slay a Dragon, wherein is the glory of victory?

Hang in there brother and give it no thought. You WILL WIN and then before you lies the path of the true Victor to whom belongs, the spoils of WAR.

Breathe deep and smell the victory before you.

Your Brother in This Fight

JimmyK

Shadowfax · Guru

Day 16 is great! I hope the breathing resolves itself and you are feeling more comfortable very soon ... like tomorrow. Please keep us posted just in case the drone fails.

Tig · Admin

Hi Dave,

It does sound like Riba related fatigue. You're certainly perfused through and through by now, so it's going to start having an effect on you. It's part of the process unfortunately, but you can be assured that you're feeling better than your Dragon. The fatigue and anemia are signs of effective action by your medication, it's working Brother. I could tell the difference between a respiratory thing and the Riba. It will be interesting to see the results of your first blood tests. Riba will affect the hemoglobin and RBC's, it's common and normal. They'll keep an eye on it. Just take it easy, rest, continue your nutritional program and push the water. Hang in there buddy!

Linuxter · Guru

Day 16

Breathing is very labored today, got some chores done but just doing a few things exhausted me.

I'm still flip-flopping as to whether it's the Riba or upper respiratory crud, if shortness of breath from simple activities is a symptom of the Riba, it's probably that.

Other than being tuckered out I'm doing great, slept in this morning to allow myself to rest, I'm keeping up on the water and getting plenty of nutrition via the green smoothies and a just few carbs and protein on the side.

... onward.

Dave

Scott18927 · Senior Member

Well I found the Coconut water. I don't really care for the test but read that article and will try some spices to make it better. I just chugged it down like a glass of whisky in grade school. LOL. Maybe I will acquire a taste for it.

The benefits are amazing according to that article. I'm a little hesitant on something that is put in a container but it says only additive less than 1% natural fruit sugar which from my understanding is bad. Maybe I will look for other brand without that.

Tig · Admin

Here's some good information on the topic of today, Coconut Water. You never realize the benefits of things like this, until times like these make you get off your duff and look! Perhaps we should open up a mail order nutritional supply! we've collected some good ideas.

http://www.seedguides.info/coconut-water/

Scott18927 · Senior Member

That is great recommendation Jimmy. I too will go get that. Today, I am not wanting to move off couch. I went straight from bed to couch. I got a lot of computer work done today so I have motivation (Because I hate paperwork) but I just don't feel like moving. I do have a dog so I have no choice. Besides the quick trips out earlier for her to go to the bathroom, I have been on couch all day.

Time to get dressed up and head out in all this snow for her to walk. I am dreading it big time, but I can't do that to her. Besides, I Always feel better after exercise no matter how much I don't feel like it. I just hope I don't get the cramps. I can feel my calves every time I walk, just getting ready to have a Charlie horse. I will try the coconut water. Not sure where to find that.

Also, today I have had some serious sugar cravings which I gave into. Stomach feels awful after eating 15 Oreo Cookies. And I am sure this doesn't help the cramps and hydration.

Linuxter · Guru

Thanks Jimmy,

Much appreciated!

I'll see if they have any at the grocery we normally go to.

We live remote so don't get to big chain stores often, but it's likely they probably have some locally.

I'll pick some up to have on hand.

I like the concept "all-in-one" "pleasant delivery system" ... I'm a fan of easy ... smile

Thanks,

Dave

JimmyK · Guru

Keep up the great work Dave!

Now for a bit of personal observation.

We all know we need to remain hydrated and those of us who have taken Ribamonster know that cramps can occur. We tend to run to a banana and vow to drink more water.

I personally feel it is smart to add Coconut Water. It takes from the drudgery of constant water intake by adding a pleasantly flavored drink that is a great source of potassium which supports the cramping problem at the same time as increased hydration.

Hydration + Potassium in one pleasant delivery system.

My 2 cents for the day.

JimmyK

Linuxter · Guru

Onward to wk 3

Today went well, little bit of Riba Rage was trying to rear it's ugly head but I walked away per advice ... so far it's controllable.

Jo's not feeling up to par either so we kind of tried to lock horns a few times but we both backed off (pretty easy, we've been together 22 years this month).

Tiny bit of nausea this morning until I ate some cereal fine after that.

No headache today, slight bit of extra tension in neck and shoulders but nothing bad.

All in all, good day.

1/6th done with Tx.

Dave

Linuxter · Guru

Ya, Tig just reminded me I need to hydrate, we all need to remind each other, it's Soooo helpful to stay hydrated.

Hope that lotion helps. It also has (link --->) Ceramide-3 which helps the very thin, upper most layer of our skin.

Bananas have a lot of potassium, good idea, helps keep the charlie horses away. Drink More WATER (reminding self).

Dave

Scott18927 · Senior Member

oh and something brand new just happened when I walked across the room. My calf went into a cramp. Once, I moved it in a different direction and saved it from the cramp. The second time dropped me.

Since I traveled today, I think I am lacking fluids. Going to eat a banana and pound some water. Hope it helps.

Scott18927 · Senior Member

Thanks. I will definitely check out those lotions.

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