Boyfriend diag and now on treatment,..questions!

[Pinky45]

Hi all....My boyfriend has been diagn with Hep C.. he is 50 I am 45. He just started the regimine of Copegus pills 2x daily and Pegasus injections weekly.
Just new to the regimine this week he is,.. and has had the "flu" like symptoms.

What is really happening and I don't know if it is to do with the meds or something different, however he has been coughing like crazy. In his sleep, to the point it wakes him... to the point his sleep is disturbed by coughing yet he doesn't remember ( i have heard watched him)... he is weazy,.. and coughs more then usual since meds.
Does this sound like any reaction to the meds??

Also,.. new to this all him and myself... as a "girlfriend".. anything I should know or be aware of myself with this "hep C" thing in our lives other then sharing blood contaminated items.??????

I am wondering should i be checked in the future regularly as well now that he has it.

ALSO,. .his doc said he could be Hep C free after treatment if all goes well.. does this sound right?? I thought once one had Hep C.. it could be contained but not raticated?

Thanks
Pinky45

[Pinky45]

I am laughing "with you".... regarding your antifreeze~!

[medicmommy]

I stand corrected! PEG (polyethelyne glycol) is what our interferon is suspended in...Ethelyne (or diethylene) glycol is indeed antifreeze and is not the same...But it can be found in some toothpastes...:O  (And all this time I though somehow, by injecting bits of antifreeze into my body, it made me tougher! I thought," If I can survive interferon/antifreeze injections, -I can survive anything! HA! ...Oh well...)~MM

[desrt]

Polyethylene glycol is not ethylene glycol. It has nothing to do with anti-freeze.

Pinky45:
I believe your GP is mistaken about the 'poison' thing. Your body creates IFN on its own - just a lot less. MS is tx'd with Beta IFN - HCV with alpha IFN.

[WriteItDown]

Hi Pinky,

All I can tell you is that treatment is unpredictable!  Many people have it worst on the 1st shot.  Your GP is wrong to say he'll definitely feel worse as time goes on.  I think it's safe to say he'll feel more tired as time goes on, but whether or not the other symptoms get worse depends.  My husband is on week 17, and I'd say, while he's gotten progressively more tired, he is feeling less of the flu-like symptoms and headache than he did, say, the first month or two.  Things do change but not neccesarily for the worse -- some things could get better, even. So your philosophy of "one day at a time" is truly the best way to go.  Also, whatever happens to him, there are things to help with most of the symptoms, and people on here know all about them.  So post whenever he's having specific problems.

I don't know much about MS, but I do know the type of interferon you take is different from the interferon HCV patients take....

And, finally, as a spouse myself I can second what NYGirl said: Don't take it personally!  My husband is a sweet guy, but he has been quite touchy and irritable and bossy on the treatment.  I just try to count to 10 and tell myself it's the meds and not rise to the bait.  It's much easier when one person in the relationship can be patient and calm, so I try for it (not that I always succeed, believe me!) Also, he's been very emotional, and much more sensitive than usual....we joke that the treatment has made him understand what it's like to experience PMS, and that's a pretty good analogy.

Best of luck to you, hope everything goes well for you both!

[medicmommy]

Hello!
And so it begins...Everyone is affected differently by the treatment. I did my shots at the same time every week on Monday nights just before I went to bed. During the night I would sleep through the aches and chills (I had an electric blanket for the chills and would take tylenol when things were at their worst). I kept water by my bedside, and used a moisturizing gel made by Oragel to keep my tongue and mouth moist during the night. Benedryl helped the "riba cough" (freaking annoying hack!) After a few weeks, I would have about a 36 hour  symptom delay until the shot dregs would hit. And so they cycle would go....Monday night- shot...Wednesday feel fatigued, achy, VERY low energy...By Saturday, the fatigue would lessen, and I would have enough energy to do housekeeping and laundry...
Keep in mind, this treatment is a 1-2 punch. The pegelated interferon is interferon suspended in PolyEthelene Glycol (PEG) (Yes, the same stuff used in antifreeze!) so it is released slower into the body over a longer period of time. The interferon jacks up the immune system while the Riba suppresses the virus. There are a bajillion different kinds of chemotherapy, with this being one of them, and your MS interferon being another...I hope this helps..:) ~MM

[Pinky45]

Thank you for all your thoughts. I appreciate it very much


Well he went to the doctors yesterday... and his lungs are fine. His GP says it is all part and parcel to the disease and therapy. Nothing for breathing,.. no inhalers etc. She did not give him anything for his cough etc as she said it could cause more problems for him.

She told him, this is just the beginning, that he is going to get "sicker"... more irritable etc. Not too nice to hear when just starting. This to a guy who is anxious about things as it is!
However he needs to know what to expect i guess.

One thing she said.. was the interferon is like putting poisen into his body. If he didn't have Hep C,.. the meds could kill him....... This sounds a bit extreme???
Great GP but she isn't the specialist who is dealing with his regimen.
He sees him next week

I am a bit confused as I am on an interferon however for "M.S"( multiple sclerosis ) It works on me by blocking my immune system from attacking the mylen sheath on the nerve fibers in the brain (what causes MS)

They both are interferons we are on but mine I will be on all of my life (daily injection as MS never is cured) .. I don't get sick like him with his interferon for HEP C and no blood work is required.
So I wonder what is it the meds are doing to him for the Hep C???? Him getting sicker and more irritable, I am wondering why ???

The other Question my Boyfriend has for you all is.... Does the "sick" flu like symptoms get better after injection as the weeks go by.. OR,.... will he feel like hell each and every time he takes this shot?
Last night he said.. "he hoped he didn't feel like he did the first couple of days after his first shot each time for the duration of the needles"..... Is this to be expected???

I just keep saying to him.. "One day at a time"....."One moment at a time"... and that I am glad he is not going through this alone :)

I love the guy and he has been through a lot in life,.. and I say to him,... "this is your second chance on life", to get "well" and give it time,... You will make it!

Thanks in advance for your advice and answers.
You are a awesome bunch! :)

Pinky45

[nygirl7]

Sometimes (although it should be later than two weeks in) the cough can be a sign of hemolytic anemia which we develop from the ribavirin.  Shortness of breath, wheezing, coughing, ringing in your ears....however unless he is on a LOT of riba for his weight it's most likely not this (yet).  I mention it just so you can look for that in the future if it should get to be more of a problem.  It's easy to tell you get a copy of the bloodwork and look for the number next to HGB - hemoglobin.  Probably he started around 15/16 for a man if it gets down to around 10 you will know you need to intercede with medications to help it go back up.

Treatment really isn't fun for anyone and over time the lethargy can really be dreadful.  As well as his temper - because of the meds the person on treatment can REALLY get angry at the drop of a hat so Please don't think it's you.......we call it riba-rage - this crazy unrational GGGGRRRRR! that just bubbles up out of nowhere till we are standing screaming but not really knowing why.

I just wanted to mention that to you because you obviously seem very caring and if it happens I don't want you to think it's you in any way, its not believe me.  It makes road rage look like nothing and it's insane but it's the meds just keep remembering that and you will be fine :)

You won't catch hcv from him......and if he follows all the treatment protocols there is a good chance he could be CURED.  Get him to get copies of all of his blood work and test results - learning how to read them can be invaluable. The more you know about the disease the more power you have over it!

I know I just rambled on about a whole bunch of stuff but especially I don't want you to get overwhelmed by all of this.   It's VERY easy to forget the person treating has hep because they don't LOOK so sick but it is a form of chemo and it is rough - he's very lucky to have you I wish Ihad had someone like that for me when I treated. :)

Good luck.
PS I"ve been cured for almost three years...so yes Virginia there is a Santa Claus - it ain't an easy ride but it is doable.

[newleaf09]

I had a chest x-ray before starting.  My cough was initially thought to be an infection but no anti-biotic could stop it, so they sent me for another chest x-ray.  It showed clear lungs, about the same as before starting the drugs, so they diagnosed a riba cough.  I kept it until a week after the meds were stopped.

I doubt his white count could drop in only one week but it's alwasy better to get everything suspicious checked out.  Be sure and check out all side effects.  They can help with a lot of them.

[Pinky45]

Thank you thus far, for your replies.

He is going to the docs today. Going to take your comments and suggestions with us.
He did have a "wheeze" before treatment but yes it has worsened. And the cough,.. yes it is really bad,.. and at times does feel like he has broken, a rib muscle to the point of pain.

We are going to suggest a test on his lungs as reading the idea of the drug lowering the blood count (white cells) can bring on bacterial infections is a worry. We didn't know that.
Thank you all for educating us on that.

I worry it may play havoc on his heart or something. I worry he is going to keel over with a heart attack when he gets going.!!

Today he has woke with a rash on stomach and chest.. He is just 4 days into treatment .. the poor guy!! This is just the beginning for him.

I must mention here .. he is reading this forum,.. with me.. however,.. doesn't want to write questions etc... "I will however".. LOL.. i guess it is a bit of the "denial" part for him.

I must add,.. he does smoke "pot"... has for years. Has slowed down quite a bit.. I think that doesn't help the coughing either,. but it is part of him.. if you know what i mean. :)

This so far.... is a wonderful , place to be.. going through this.. as someone mentioned.. coming "HERE",.. it makes one feel they are not alone with their struggles through it all. This is so to speak ,.. a "family" of those going through the same thing

Thank you all.. and Bless you in your progress
We will be involved on here as it is a great tool and we hope we can be help to others as well as time goes on.
Pinky45

[medicmommy]

Have him checked out by a Dr. The wheezing may be caused by a moderate allergic reaction from the riba, or from an actual respiratory infection. The allergic reaction can be managed with benedryl (DO NOT TRY until seen by a Dr!) and the wheezing/ respiratory infection by a medicated puffer and/or antibiotics if necessary. It is important not to use the benedryl until evaluation because it can thicken mucous and make a respiratory infection worse...~MM

[desrt]

May not have anything to do with the meds, but take care that the chronic cough doesn't lead to secondary/bacterial infection. This can be hard to shake if your white cell count is lowered by the interferon.

[newleaf09]

Totally agree with Andiamo about transmission worries.  Hepatitis C can be eradicated.  If he responds well he will be virus free for the rest of his life.  I had the cough; it's caused by a slight allergic reaction to the ribivirin.  It took 4 or 5 weeks to start with me but I kept it throughout the treatment.  I could control it by drinking a lot of water during the day and had to use hydrocodon cough syrup at night.  It's a good anti-tussive (cough suppressant), probably better for coughs than pain relief.  He should mention all side effects to his doctor, as they generally make an effort to control side effects to help the patient better withstand the treatment.  Good luck to you both.

[Andiamo1]

The treatment can be pretty rough, both emotionally and physically.  I did develop a cough myself when I was treating, but never could be sure if it was directly caused by the drugs.  Some people get some emotional problems, like trouble sleeping and irritability, so if that happens, try and remember that it is the drugs that are causing it -- not so easy to do.

HCV is not sexually transmitted, so don't share a razor or a toothbrush and you should be fine.