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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?"
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?"
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!!
Your support for him is awesome!!
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.
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.
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.
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.
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
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
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
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
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)
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)
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