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2131202 tn?1339967703

Side effects-- how bad is too bad?

Sitting here tonight, hubby in triple tx having had a bad week and gone to bed by 8 p.m., and find myself really unsure if I should load him up and head to the emergency room.  His side effects up til a week ago were milder than we expected overall, but the last week has been horrible.  He takes 5th shot tomorrow.
Hard deep cough, initially productive but less so last couple days.  Deep, deep cough.
Cannot eat.  Hungry, but unable to eat more than a couple bites of anything.
Weak.  Nauseous.
Horrible, relentless, severe headache.  
Fever on, fever off.  But not yet over 100 degrees.
Eyes watering, burning and slimy (but says vision clear when he clears the slime out of his eyes).  
Burning stomach (probably from not eating enough, not sure)  Aching, dull, miserable all over.  

Guess my question is, how bad is too bad?  Is there a point at which symptoms are more than expected side effects?  I don't have anything to measure this against, I think that's my problem.  I find myself thinking, "This is bad, but is it worse than it should be?"
29 Responses
Avatar universal
From what you posted it doesn't sound like much the ER could do for him, He really needs something for being nauseous as thats going to make him be weak from not eating. As for the cough the Riba can cause this and headaches is a common side. Might be best if you put in a call to his treating doctor, have you tried tylenol? Not really a fever if its not going over 100...... Just hang in there as things will get better. Best to both of you.
2131202 tn?1339967703
Thanks-- just never seen him quite like this in 20 years... He is going to ask for something for nausea when he goes in Tues.  He's taking Aleve for the headaches, but no help.  He's also taking Zantac for burning belly, but not helping.  Both were OK'd by his doctor.  He says 90% of his trouble is from not eating enough, but he says he just can't do it. Leaving him to sleep all he wants for now, and hoping for a better day tomorrow.
Good news is his viral load came back "0" this week.  5th shot tomorrow.  The VL news breathed a little life into him when he got the news Wed.
"I'm not stoppin'!"  is his new mantra.  
Can't call treating doc, holiday weekend....
163305 tn?1333672171
During my treatment I asked this very same question of my nurse.
She said if I get a high fever, vomiting blood, vomiting that won't stop, diarrhea that won't stop, jaundice,and/ or dark tarry stools.

How often is your husband having blood work?
During the first weeks blood work should ideally be done weekly.

Your husband needs nutrition. He has to eat ! It doesn't matter how long or how hard it is for him to get it down, he needs nutrition.
If he refuses soft food  like oatmeal or soup how about fruit smoothies ?
You can add whole raw eggs for protein and flax seed meal for fat to the smoothies.
Give him carrot juice.

During my first time doing tx, I lived on oatmeal and potato pancakes, fruit smoothies and juiced veggies.

Once he's eating again, be sure he takes a daily mutli-vitamin w/o iron.

Try using ginger for his nausea. I juiced fresh raw ginger root to add to smoothies, oatmeal, and other food. You can add it to juice or make tea.
Some people here like ginger chews. Even chewing on a slice of ginger root can help ease the nausea.

The headache can be related to his not eating, or muscle tension.  If I don't eat I get killer headaches.
Try massaging his neck and shoulders to see if that helps.

The cough could be from the riba.Talk to his doctor about possibly reducing the dosage.

It's hard to know how much of his side effects are related simply to the fact he isn't eating.

If possible, I'd strongly suggest medicinal cannabis.
It relieves nausea and stimulates appetite.

Obviously you should contact his doctor or nurse with any and all concerns.

Good luck.
OH
163305 tn?1333672171
I type slow, so I see some of my post has already been answered.
Go for the smoothies. They're much better than an empty stomach.
Avatar universal
Congrats on being UND at week four, thats a very good sign. He really needs to get a little food in him, then maybe add some icecream or shakes for the needed fat. I'm sure is sides will start to get better if he is able to get something in him.........
2131202 tn?1339967703
Thanks for the info and advice.  Problem is he's a finicky eater when healthy, and never a big eater anyway.  I've bought everything I can think of, my kitchen overfloweth.  Oatmeal has been the one thing he can consistently get down, but not even that today. I will try the ginger.  And I hadn't thought about potato pancakes, but he loves those things.  I'll try them.  I'm off tomorrow and am going to try fixing some french toast and see if he can choke that down.
Bloodwork being done every 2 weeks, but he's got a platelet problem now and that may change.  I'm hoping the riba dosage is reviewed in light of his platelet problem, and wondering if that might help.  Will find out next week.
Thanks again.
Avatar universal
I know it is a holiday weekend but is it at all possible to have your GP paged  instead of the treating doc for some zofran for nausea?
Not eating enough with tx can cause a whole host of new side effects. If you are on Inc this will make. the burning diarreah happen and cause stomach pain and cramping. Then that leads to rashes and hemorrhoids and the 'glass shard effect.' ...it all snowballs! Not to mention you would want to make sure all of the pills are being absorbed.
I am so sorry he is feeling so poorly:( I hope is can get something ASAP! It is not fair to feel this bad. if he cannot keep anything down at all and it is interfering with taking meds than I would go to the ER just to get a script of zofran! There is no way I would risk losing meds to vomit and having it interfere with tx. I would do whatever it takes to get those pills in and staying down. That is of course my opinion. :) I hope he feels better soon!

Welcome and best wishes,
Laura
2131202 tn?1339967703
Well, he doesn't have a GP... we recently moved here, and til hep c paid a visit, the man is never sick.  Ever.   Believe it or not, his hep c was diagnosed because he went to a dermatologist for a skin rash.  So, that is why I was considering going to the ER.  We have no one else to call, with his gastro unreachable...
Tomorrow, if he's still as horrible as he was when I got home from work today, he might be willing to go to the ER.
He said today that he "thinks" he's been able to keep most of his food down long enough for his meds to absorb.  I don't know.  I hope so.  This is such a roller-coaster ride, really.  Yesterday wasn't as horrible as the day before, today sucked completely.  
This does make me realize that he needs a GP, and soon.  
Avatar universal
Yes, find a GP. There will be a lot of holidays and if you need something in the future it is best to have a lot of support. Of course please check that any meds you are given to not interfere with tx. Some doctors that are not in the liver treating field do not know what can interfere with triple. You can always ask here ti if you are really worried The trusted knowledgeable members can help.
When I was too nauseous the only thing I could eat was Ben and Jerrys ice cream. I hope he feels better! :)

Laura
163305 tn?1333672171
You know you may have to do a little tough love with this guy.
Finicky eater or not, if he doesn't want to feel like crap, he's got to eat.
It doesn't matter if he doesn't like it. I may sound like a meanie but it's time to grow up. This is his health and it is serious.

On the other hand, just give him lots of anything he will eat.
While on tx the first time, someone brought me a cheesecake. I ate the whole thing in two days. After that I ate a cheesecake a week for several months. Now, I can barely eat one slice.

Since you're the cook, you might want to start thinking about things you can prepare before hand that he can just get out of the fridge when you aren't there. How about quiche or potato salad or ???

Try applesauce with the potato pancakes, gotta get in as much nutrition as possible.
1815939 tn?1377995399
Do you have an urgent care clinic in your area. If so, that would be an option too.

I agree with the others. He has to eat. When the nausea (and vomiting) get out of control and he is not eating, the problems start to snowball.

I can tell you what happened to me because my case manager was not on the ball and did not order anything for nausea until I insisted. I had to keep calling and calling and asking. Then it took them 3 times to get the dose right. I had nausea from the first week and it kept getting worse. Eventually all I was eating was Greek Gods yogurt and crackers or toast. After about 8 weeks I was so sick I could barely do anything. I was weak and dizzy, felt faint, had runs of tachycardia (fast heart rate of 180 per min.), had premature heart beats (a lot of them), had swollen ankles and feet, had severe abdominal bloating, and severe fatigue. I should hacve been on Zofran by the second week. But they ignored my nausea. Once I got on the Zofran, all of the bizarre symptoms like tachycardia, swollen ankles and feet, severe dizziness, premature beats, and abdominal bloating all disappeared. It only took a couple of days of the correct dose and I felt like a new woman. It is the drugs causing the nausea and vomiting and then, if left untreated, everything snowballs. He wil feel 100% better if that nausea is under control.

I hope he gets something very soom and I hope he feels better.
766573 tn?1365170066
Nausea compounds all the other symptoms. Don't ask me why but I can attest to that it can.

A 24-hour clinic or walk-in clinic might be able to help with something. Meanwhile if you like your Dermatologist, ask him for a referral to a GP (Internist or Family doctor). Referral from one doctor to another is how I ended up with most of the docs I have now.

I noticed he is on week 4 and if you start addressing some of his side effects now he may be a lot more comfortable in the weeks to follow. Sorry this is happening as I realize it can be very distressing and leave you feeling quite helpless. Hang in there!!
317787 tn?1473362051
Hello, all good information above.  He has to do what he has to do to get through treatment.  That was my mantra during tx, that and this forum who helped me get through it.
Have you tried milk shakes? ....ice cream?  flat coke?  If you feel, in your gut that he needs help, then you need to take him to the ER or call an ambulance.  He may be dehydrated which as everyone above says will compund the problems from the tx and not eating.  If he is not eating that is very bad.  I had to eat some things that I hated during tx but my other mantra was I would eat mud if I had to to get better
I wish you and your husband the very best
Hang in there
Dee
317787 tn?1473362051
I forgot to add, ensure is good has vitamins and if you add ice cream it is pretty good.
2131202 tn?1339967703
Thanks to all-- he fixed & ate his whole bowl of oatmeal this a.m. and then out the door to work.  Took crackers w/ peanut butter for snack.  Hope he eats them and all of it stays down.  I've told him several times that he should probably try to eat a couple of crackers BEFORE his stomach gets empty, whether he wants to or not.  Hopefully he will do that today.  
Anyway, have tried ice cream, different flavors, was a no-go.  Ensure in fridge.  Have not thought of trying an Ensure milkshake, but will give it a go.  
Going to try the potato pancakes tonight with something.  I think that might be a winner.  
I agree he needs to force food down whether he likes it or not and have pointed that out, just hoping he comes to the same realization.  
He seemed determined this a.m., with yesterday being about his worst day so far.  He ate oatmeal really slowly, but he did eat it all, making faces the whole time but he ate it.  
1815939 tn?1377995399
Wonderful to hear he was able to eat this am.

The idea about eating the crackers before he gets nauseated is a good idea.I have found that I often get nauseated toeards mid afternoon. If I eat something, usually nuts or cottage cheese or rye crackers or toast or even some herbed green olives, the nausea dissipates soon after. I don;t have to eat much to feel better. This happens even with the Zofran so being hungry somehow does make a person more nauseated. I have heard others say the same.
2131202 tn?1339967703
I just had a light-bulb moment. Wondering why this past week has suddenly been so bad.  He had a doctor visit last Friday, and he took a cream with him that the dermatologist had given him for his groin-area rash prior to diagnosis w/ hep c.  It's ketoconazole 2%.  He stopped using it about a month prior to starting tx, because he didn't want anything else in his system starting tx.   The nurse told him he could use it (very itchy & rashy in groin area), but could not take ketoconazole pills.  He actually went into the restroom and applied it before he left Dr. office, and has been using it since.
Anyone have experience w/ ketoconazole oitment?  Just hit me as odd that his side effects have worsened so much in the same time frame as he has been using this ointment.
Don't get me wrong-- he hasn't eaten as he should for 5 weeks (he never does), but just this past week has been sooooooo bad for him.   I just wonder if there's a connection.  I think I'm going to see if he'll drop the cream for now and see what happens.
223152 tn?1346981971
Is your hubby using Incevik?  I am on Victrelis and have been reading lately about taking chocolate milk with it - it helps the dysgusia (everything tasting bad).  I don't know if it would help with Incevik but it might be worth a try.

The fact that he was UND at week 4 even though he may not have had the required 20grams of fat with each dose of Incevik (my assumption) is very good.  I love his conviction to continue. Those UND's really have a way of encouraging us.   I have not had really bad nausea problems but the Zofran seems to help so many here -- I would request that.  Your GI should be able to call in an rx for that.

He is still in the early adjustment period where his body is trying to figure out what it is supposed to do with all these radical chemicals in the body.  Sounds like his is revolting!  It should get easier, but each of us is different.

It is hard trying to figure out what to eat with all these pill takings -- for me it is 5 times a day.  The ribavirin is no problem -- I take it with my breakfast and dinner.  The Victrelis is another issue.  One week it is 1/4 apple, or maybe 4 bites of yogurt -- whatever I can tolerate as it is hard to eat so early (5am) and late (9pm).  I cannot tolerate anything spicey. Baked potatoes are one of my favorites.  Pasta with a white sauce instead of red.

Do find a GP or internist (if he is over 50).  I have had the beginnings of pneumonia twice on this treatment and without my internist's help it would have been rough.  Do get CBCs frequently -- his anemia might start to drop radically at this point and it is important to keep monitored.

And welcome to the forum, a place for HepC widows as well as patients.  My hubby is one of those HepC widows too -- as I like that 8pm bedtime of your hubby's and if I don't sleep on the bed, I just sleep on the couch!  I cannot tell you how many times I have appologized to him in the last 40 weeks for not "being there."  But it is spouses like you and my hubby that get us through.

frijole (bean)
Avatar universal
Hi Spiffy..You have received some great advice so There is nothing really for me to add ,other than welcome to the group and good luck to you both


Also : "But it is spouses like you and my hubby that get us through. "

bean:
An excellent comment. I have often thought our spouses are not mentioned enough ,as many of them take every step with us..

Hope you are doing ok coming down the stretch

Will
Avatar universal
I am not a doctor but I think it would be doubtful that the ketoconozale cream would be why this week was "so bad." (Unless it is a medicine that does not mix with tx drugs.) Even then though, very little if ANY of these creams get into the bloodstream so interfering with tx drugs is a very low to no risk.
Unfortunately, his terrible week is most likely due to the cocktail of HCV meds he is on. Some weeks are bad. Some weeks are good....some weeks are downright terrible. I remember in the first 6 weeks I only had two good days!
The zofran, once attained will improve how he feels by leaps and bounds. If he is not getting the required fat for Incivek (is he on that?) Then the virus could mutate since the medicine is not being absorbed right. The fact that he is UND already is good, however nothing can be ruled out with this virus. When mutations happen the virus can breakthrough and come back, and by then depending on a lot of things he can be pulled from tx.
So these fats are one of the biggest (and most annoying) part of treatment for these reasons and all mentioned in the posts above. super important.
and why suffer if you don't have to? You have a computer or a phone apparently so I would be googling walk in clinics in the area ASAP.

I agree, it is spouses like you that keep a lot of us going. I couldn't have done this had it not been for my husband. Thank you for being there for him.:)

Laura
1016618 tn?1420556862
I am probably in the same trial that your Hubby is in. This past Friday was my 5th shot. No one in the above mentioned the importance of a gallon of water a day. I can not stress this enough, at even 100oz's I still felt like crap, so I added another 20ozs and I could not believe the difference it made. So I have six 20oz bottles that I fill up every evening and I put two of them in the freezer. The next day I put the two frozen ones in the bottom of my little kooler and load the other 4 on top. This way I don't have to count I just drink until they are gone.

They mean it when they say 20gr fat 30 minutes before incivek. I made the mistake of not eating before one of the doses. I had the worst bile I have ever had in my whole entire 58 years of life come up in the top of my throat.I have found that just plain ole suger coated Honeybuns have about 22gr of fat and really easy to swallow if you nuke it for about 14 seconds on high. 2 regular Krispycream donuts are bout the same

Another thing I have noticed that makes me nauseous is nicotine. If I smell any kind of tobacco it makes me want to hurl. I found that by eating a couple of Ritz or saltine crackers and drinking more water helps relieve this.

I will never submit to the Dragon, I will fight to the death.
548668 tn?1394190822
I agree with TeeTom.  I didn't do triple, I did SOC but I filled three big pump bottles very morning to make sure I finished them (and often two more) by the end of the day.  It really helped.

To combat the nausea (and it was intense, and for me, related to the riba), I broke the day into 5 small meals.   Oatmeal,raisins,banana, yoghurt,soymilk for breakfast.  Banana smoothie/biscuits mid-morning.  Sardines/salmon/salad lunch.  Soymilk or yohurt fruit mid arvo.  Normal family dinner but much smaller. and supper of soymilk peanut butter sandwich.     If I really felt sick at the thought of eating, I'd have a tylenol 15 minutes prior - it really took the edge off.    I picked my way through all the meals but pushed myself (I also juiced beetroot,carrot and celery and kept them in plastic cups in the freezer - tried to have one every day or two).   But water was a biggie, even though I found it hard to go anywhere needing to stop all the time, I would get headachey without it.
2114467 tn?1358213856
So glad your hubby is feeling better, and off to work too. I felt concern when I read this last nite. Remind him not to forget or lapse w/ the water. I fainted at work the other day; I'm sure it was dehydration. Big wake up call for me.
Your support for him is awesome!!
163305 tn?1333672171
I agree with iron pony, a topical cream is not the problem.
When I got angular chilltis, from tx, ( corner mouth sores) the keto cream worked wonders on it.

If he's thin, you're going to have to encourage him to eat more than a few crackers. It's easy to lose weight on tx, especially if you're finicky.
What if he takes a few granola bars along with the crackers, as snacks ?
Tell him to think of eating as a grazer in addition to three meals.

As you wisely noted, it's better to already have food in your stomach, then wait until you feel hungry and sick.
Avatar universal
I too had nausea so bad I didnt think I could eat one bite of anything. However it didnt take too long to figure out that when I made myself eat, I felt better almost right away. I cant stress enough how important the water is. Bless you for helping him. My wife had it worse than I did sometimes, but she never complained one bit. He really needs you now, and it sounds like your up to the task.
223152 tn?1346981971
Thanks for the comment on spouses.  When I treated the first time 05/06 my hubby could not understand why -- you know, if you feel good and there are no signs of damage why do it.  I felt pretty alone that time.  This time, with the dx of compensated cirrhosis he is extemely supportive -- even goes to some of my doctor appointments with me (well, it helps if we can throw in a Rangers game).  It does make all the difference to have a support team.

to TeeTom and  Kristina -- that is a lot of water.  However, you are right -- when I get into a habit of not drinking my water I feel much worse.  We must have it to flush the system.

bean
547836 tn?1302836432
I was scanning through the answers here and realized someone mentioned to monitor his bloodwork.  Just wanted to emphasize the frequency for bloodwork monitoring.  When I was around 4th week on Pegasys/Riba, I experienced bone marrow suppression.  My white blood cells and later red blood cells were down.  Because of anemia and thyroid issues all caused by treatment, I often felt nauseous and palpitations.  Good luck to you and your hubby!
Avatar universal
I'm only on peg/riba which, from what I read on posts, is not nearly as difficult as the triple tx, but I will say that I noticed a huge difference in eye, skin and headache issues when I slacked off on drinking water.  When I connected the dots resumed with a vengeance, and within hours my symptoms went away.

I mentioned this to my tx team and they said interferon causes dehydration and dehydration causes headaches and a whole slew of symptoms. Of course it is also said that riba causes dehydration.

Needless to say, I am amazed that when those symptoms start I can address them within an hour or two by immediately recharging my fluids. By staying on the fluids I now find I avoid those symptoms altogether on a daily basis....unless I get busy and slack off.  

Maybe with the suggested food ideas he can increase his fluids, too and start to feel better. Just a thought. Good luck.
Avatar universal
i really liked your advice i am sic and a diabetic marajuana is illegal here but i just learned bout marinol a medical equivillent and had good results
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