In week three and starting to feel it

[rikkyde]

In my third week of treatment (Sol+Rib+Peg) and finally feeling it this week. Fatigued all the time, extremely dry mouth and light headed.


Until this week, the side effects haven't been too bad; a bit fatigued on day 2-3 after the PEG shot, and some itching all the time that resolves with lots of oat meal or baby oil baths and benedryl.


I did the two week CBC blood work earlier this week but results not in yet.


The good news - only 9+ weeks left


Any advice?

[Mike]

Hi Rick,

I just finished 12 weeks of SOL+INTF+RIBV. I started feeling increased fatigue about week 4, with itching and a dry mouth.

If you can get a quick nap during the day, it helps. I drank a lot of water and kept a full glass next to me a night (for the dry mouth). I got a back scratcher for the itching

The side effects seemed to level off around week 5-6 and stayed about the same the remainder of treatment. I also had some sleep difficulties, developed the Ribirvin cough, shortness of breath and weakness.

Your doctor will monitor your CBC's and thyroid levels (TH-4), and, can adjust the RIBV dose (assuming you're currently taking 1200 mgs daily), which can help reduce some of the side effects if they become significant.

The Interferon seems to cause the fatigue, which is the worst 1-3 days after the shot. There's not much that can be done with that.

The Solvaldi seemed to cause headaches, the first coulpe of weeks or so; but seemed to wane. I used Tylenol (up to four 500 mg per day) for most of the symptoms (i.e., headaches, body aches and so on). It worked for me (make sure your doctor clears you for the Tylenol).

You should have your VL checked at week 4 - and it should  be undetectable at that time (which is a big boost)! You'll get the 4-week lab results during week 5; and your basically 1/2 way home!

Remember - we're slaying a dragon here - which takes a little time, energy and focus. 

The treatment goes quick, however, and that's what I focused on.

Best wishes, Mike

[lporterrn]

This is fairly typical, and don't be surprised if it gets worse. (I say that, because sometimes we get scared unless we know what we are going through is expected). Drink lots of water. Talk to your doc about B-12 supplements http://www.webmd.com/hepatitis/news/20120717/vitamin-b12-may-boost-hep-c-treatment-response  Here is a link to info to help with the lightheadedness http://www.hcvadvocate.org/hepatitis/factsheets_pdf/SEM_Dizziness.pdf

[rikkyde]

Thanks Mike, everything is playing out exactly as you say. Hopefully the fatigue will stabilize and not get worse. Fortunately, I work at home, and have a VERY supportive boss.


Yes, I'm taking Riba 1200/day. and the max Peg. Headaches haven't been too bad, and Tylenol is my friend. Muscle aches occasionally, but not that often; a hot bath and weekly massage works wonders. I also will take a sleeping pill if having problems/restlessness at night. As to hydrating, my pee is almost colorless I'm drinking so much


I already have the paperwork for my 4 week VL test, with a big star on my calendar marking the day. I'll report here, hopefully happy results, as soon as I get them.


Appreciate all your (and the other members of this board) support and expert advice. It makes going thru this so much easier. Even thou my wife and family are very supportive, they don't really understand what we're going through. Fortunately for me, this is my first experience in treatment. I haven't had to go thru what you and so many others have in the past with extended treatments with less than great results.


I know this dragon will be slayed; I'm almost 25% of the way there already.

[rikkyde]

Thanks Lucinda; you're an amazing wealth of information and support for us.

[Mike]

I'm glads you have a supportive boss - that's a big, big help. I was able to come in to work a little when I was having a bad day. I live really close to work and came home for lunch and took a nap. I have a desk job, which isn't physically demanding, but can be mentally exhausting.

When I went through treatment in 2001, my employer was threatening to transfer me to another office/city or I would have to find a different job. I explained my situation, indicated I could still perform the essential functions of my job, and requested a reasonable accommodation. I then asked for Family Medical Leave Act paperwork (FMLA), as the employer was  covered by the law. I went to my GI, told him I was going to be fired because I couldn't keep up with the workload, and he took me of work PRN. I faxed the paperwork to the HR dept and was able to arrange a modified work schedule.

Thank God for FMLA. I had enough to deal with getting through treatment, I didn't need to lose my job as another side effect

The point is: Hep-C is a qualifying disability under the Americans with Disability Act of 1990 (ADA), and if your employer has 50 or more employees, they are required to follow the mandates of the FMLA and how these relate to qualifying disabilities under the ADA (i.e., up to 12 weeks of time off per year to recover from a disability or qualifying family situation).

Simply put: How treatment effects work is a big consideration when starting treatment. This is something that should be discussed with your doctor before starting. Find out if your employer is required to follow the FMLA. Talk to your doctor about completing the paperwork if needed. If you're comfortable with your employer, discuss it with them. You don't have to reveal you have Hep-C, you can indicate that you are starting 12-24 weeks of "preventive chemotherapy", which can have some adverse side effects that may impact you. The employer should know that your doctor will be closely monitoring you during treatment, which will require weekly blood work, and that you'll schedule the labs and doctor appointments late in the afternoon or during the lunch hour. Let the employer know this is temporary and should be manageable.

The good news: As treatments get shorter in duration, and free of INTF+RIBV, this will become less of a concern.

The important thing is to know your rights under the ADA and  FMLA before you start treatment, as no one should have to worry about losing a job while slaying this dragon!

Best wishes, Mike

[Marysee]

Rick, sounds like you are doing all the right things to deal with this. I am on my way to my weekly massage right now, that really does seem to help as I have had severe back pain. Took my last shot last night...hoping the back pain goes away in about a week.

[rikkyde]

Last shot - I bet that feels nice. G'luck Mary

[Marysee]

Yes it felt very nice...didn't even mind poking myself . Now one more week of Sov/Rib and I will be done.

This forum has been so helpful to me no one understands like people going through the same thing...thank you all.

[bretb13]

Marine phytoplankton oceans alive
Synergy 12 mushrooms (earthstongue.com)
Exotic psilocybes 4 pack customer grab bag (sporeworks.com)

This is a natural treatment for hepatitis c that worked for me, completely cured me

[bretb13]

Hi I'm new to the forum.  Hope everyone is doing well in their hepatitis treatment

[jberlin]

Bret,
Your natural immune system is what cured you if you had Hep C and now don't.  Men, and more often women, can clear Hep C on their own.  I think it is like 15-20% of infections.  Clean living might help, but most people need the miracle drugs we have just seen in the last few years.

Best wishes,
jack