Sovaldi-Pegasys+Ribavirin - Week 4 Worse than previous weeks

[Rose]

Help, first time posting in any forum in my life.
Husband on new SOV treatment with Pegasys and Rivavirin and is in his third week. This is the worst week to date and his mood is getting darker by the day.
Doctor said after 2-4 weeks it would be a breeze but he is getting more side effects with each passing day, headaches all day long, nausea all day long and no appetite. Can't sleep.
We were expecting the side effects to lessen but I think they will continue, is that correct. Can they get worse and is that normal?
Any help would be appreciate.
Thanks
Rose

[Marysee]

Mine did not lessen, I am one month post treatment and finally starting to feel better. Definitely ask the dr for something to help him sleep, dr gave me lorazepam and it was a big help. It was a long 12 weeks but so worth it, good luck to you both.
                                                       

[rikkyde]

Rose,
I'm on my last 2 weeks; 1 PEG shot remaining, and 2 weeks of RIB+SOL. For me, the side effects stayed pretty constant.


I take the PEG shot Friday evenings, figuring to leave the weekend to get the majority of the impact. It wasn't always the case -- sometimes it didn't hit me until Mondays/Tuesdays, other weeks, Saturday/Sunday was bad. This week, it's Monday afternoon and not a good last three days for me.


Drink LOTS of water, and them more. Also, ibuprofen or Tylenol is your friend; just be careful to not OD on it. After all, we're trying to fix the liver here.


For sleep, I take Zalepon; its also known as a travelers sleeping  pill. They work for about 4 hours, but allows me to get back to sleep quickly. Takes about an hour to kick in.


My biggest side effects are the extreeme dry mouth from the RIB, very very tired most of the time, especially those few days after the PEG shot, light headed, and a rash/itch that gets really annoying. I found benedryl and oatmeal baths help.


Fortunately I didn't have the nausea problem. There's probably something the doc can offer to help.  I can't say I had no appetite. But, nothing was very appealing.


I did find thou I have some mood swings; it took me a while to identify, but basically I just didn't care about a lot. Your basic "don't give a crap" attitude; my wife noticed also.


Hang in there. Keep reminding yourself and him, it's only 12 weeks. Put up a big calendar and X-off each day, and mark how many are left. Don't get me wrong, this isn't fun, but have strength - he's in week three, so, almost 25% done; keep looking at it that way. Every day brings you closer to the end.


 

[seeker0056]

I am going on 5Th shot but also from day one have been very ill all the same systems and more swelling of hands, face, feet etc....head feels like it is just going to pop at any minute and on top of it all ate seafood that I have no allergy to and man intoxicated my liver and kidneys so fast don't know if I am coming or going and to boot can't get detoxed doc says cause it will clean all of the meds out to. now I ask who is suffering here hint not him . this is my 3rd bought with regm.... first 2 gave me heart attacks and had to be taken off (why did they let it get that far?) now will this one give me an aneurysm and then they will say oh it is not for u. Sweetie tell your hubby to invest in a nutria-bullet to help ease up the work the liver has to do to break down the food (one less thing to stress it over) plus it will give him the nutro... his body needs and help with the headaches too. I can't afford organic but just buy reg.. and wash really really well and cut the things up and put them in the portion sizes in storage bags and put them in freezer bags and use only the portion u need and will have plenty. remember fresh frozen is just as good as fresh just lasts longer, do it with everything even nuts because they have natural oils that will auto freeze. maybe by reading this I can help all of u get thru this better. as far as nausea tell doc to give him something for it along with something to sleep and pain lorazepam works very well for head, stom, pain, sleep. will help u all get thru it. U can also massage the back of his neck follow it up to the bridge of his nose with lite pressure and apply more as he can stand it, if u have shower massage run that on his head as often as he can stand it and keep him out of sun at all cost and cool but warm.May God Bless us All. always was and always will be Seeker   

[lporterrn]

Shameless self-promotion here - as a nurse, and hep C patient with 3 treatments under my belt, I wrote 2 books to help with hep C treatment. It is awkward to mention this, but I did write these to help others. You can read quite a bit for free on Amazon. If you go to my website, click on the books and they will take you to Amazon. And of course, we are all helping each other here on this forum.
http://www.lucindaporterrn.com/blog/

[Rose]

Thank you for those that posted, it is nice to know that someone cares enough to take the time to reply.
Saw the doc this week for results of first (2 weeks) blood test and his VL is "0" down from 3.8M which is good. Tried to tell doc about the side effects his response give a script for sleeping (Restoril 30ML) too strong, could not get him out of bed until 5pm the next day....won't take it anymore.
Doc also gave script for irritability (Xanax 0.5mg) did seem to help but stopped taking because the headaches are worse.
Doc ushered us out of the room, literally, as our 5 minutes were us, this seem to be his MO........not impressed and begining to doubt his knowledge of this treatment as he wanted us to wait for the new treatment that does not include Interferon. We were blessed as we did not wait because I lost my job and now have to pay Cobra fees (very high) to keep the meds coming for the next three months.
Stopped take Cabergoline (Pitutary Tumor med) as we suspect they may be causing the headaches to get worse. Doc approved the Cabergoline but again I dont trust his judgement. Hopefully he won't stroke out or have an anursyium (not correct spelling) from the headaches, guess we will just go on our own judgement and wait for the next two months to go quickly.
Can't find much online regarding actual post my patients on this new regime with regard to side effects other than a few that say they don't have any problem with side effects that are debilitaing.
Thanks for listening.
Rose

[Mike]

Hi Rose,

Sorry you're husband is having some difficulties with the side effects. Both RIBV and INTF have noted side effects, that can debilitating.

I completed the same treatment (SOL+RIBV+INTF) in April. My side effects included, exhaustion, fatigue, dry mouth, chronic dry cough, dry skin, itchiness, depression  and insomnia (which was ironic because of the consent fatigue). I managed the best I could and just plowed through the 12 weeks. It wasn't fun; but went quick.

In retrospect, I also did  a round of treatment in 2001, which involved 48 weeks of RIBV+PEG INTF. This was horrific, and I basically lost a year and 1/2 of my life (it took a good 6 months to get rid of the side effects after I stopped treatment). The treatment failed.

To put this in perspective: 12 weeks is very manageable for those of us who did the old 48 week course treatment (there is no way I could, or would have done another 48 week treatment).

My point is that 12 weeks goes quick and your husband is now virus free after just two weeks of treatment! Think about that: The virus has been beaten to the point that it is undetectable! And any lingering virus is going to get the crap kicked out of it for the next 10 weeks!

That's wonderful news! Tell your husband to focus on that and the side effects, though difficult as they might be, may become more tolerable.

Sometimes we have to go through hell to see heaven. And that's how this treatment is.

When you and your husband go to sleep tonight - remember that the virus is now undetectable and he is well on his way in slaying this dragon!

Hang in there! Solvadi is a game changer!

Best wishes, Mike

[Rose]

Thanks Mike and everyone for their comments and reply. I do appreciate it and yes in like of what everyone else has done on the 48 weeks treatment (alot failed) this should be a piece of cake...... if you have the info needed to assimilate it correctly.
Unfortunately because the first two weeks were basically symptom free and because we have a doctor that we cannot speak to (he is always in a rush and never gives us more than 10 minutes max) we were unaware this was typically and let our stress make us think something else was going on, perhaps he could not take these meds or was taking the wrong dosage etc etc.
After reading alot and hearing from others he is doing better, some good days and some bad days. Water seems to help alot and just generally doing nothing but rest, sleep more than 1-2 hours just doesn't happen. Sleeping meds zonk him out too much.
Again thanks for the comments and will keep all advise as next blood test (4 weeks) is due out Monday.
Happy weekend

[Mike]

Hi Rose,

I'm glad your husband is doing better. The treatment is no fun - and there are good days and bad ones.

The important thing is it is quick, effective and a your husband has an excellent chance for a cure (much better then just a few years ago). That's what kept me going and help me get through the 12 weeks.

Tell your husband we're pulling for him and the cure that's just around the corner!

Best wishes, Mike