I am more confused than ever???

[punkey77]

I have read many posts & asked many questions, but there are so many abbr. & terms I do not understand!!
I have been on a treatment regeem of Sovaldi 400mg 1x a day & Ribasphere (Ribarvarin} 3 200mg caps 2x a day (1200mg} for about 15 or 16 weeks (Geno 3a). I have had so many side effects & was told from many members on this post that many have had none, some or many side effects? When I called my Dr about a wk ago he seemed a little surprised that I had any side effects & did not even seem to know any of these side effects existed at all. He of course asked if the other people on this post had been taking Interferon {poison} not my words but the previous Dr's. I told him I only referred to the same Genotype & treatment with no Interferon. I also asked if my age (I am 65) would have anything to do with it & was told no. I went for my 2nd blood test yesterday Fri. Jan 23, 2015 & will be probably be getting the results in a week or so.  

My side effects are getting worse, hair falling out, dry, flaking, red skin {especially on my face} tired all the time, aching joints, itchy skin & nasal passages, muscle weakness, irritablity, some mild depression & brain fog!!! I have severe chills, mainly when I am standing and my Dr. stated he never heard of this!! Wow this makes me really confident.

I must admit, I am really frightened & want to stop the medication. I do not think many Dr's even know the full range of side effects or post treatment, long term effects of these new drugs. I will wait for the results of the most recent bloodwork before doing so.

[Dee1956]

so sorry I was on my phone last night and hepatologist was auto corrected to Hematologist,

[Dee1956]

That is so funny. Thanks for sharing. My husband will ask if I have eaten when I get grumpy. Thanks for sharing :)

[Dee1956]

I wanted to come back to say everyone is different in age and health..you could be having a worse time than others this doctor has treated. Or maybe he thought like we all did that the newer treatments would be easier. Is your new doctor a hematologist? Just wondering how experienced he is. Thinking of you. Try to take it easy on yourself. Please don't feel alone.  Carl has a good thought for your skin

[Carlhcv]

I had lots of horrible side effects but I attribute most of them to the interferon (poison!). Coconut oil on the skin helps. IMO, all of the commercial skin creams are crap. Drinking a couple gulps of something tasty right after chugging water made it easier for me to drink water. Keep an eye on your blood counts. I did not know that Riba could cause such bad side effects. Good luck to you. The people here are great and this is by far the best resource for us so post as often as you want or need to! Best wishes.

[Dee1956]

Do you have a copy of your blood work? Only asking because my hemoglobin went from 14.8 to 9.7 I felt like hell could not catch my breath. The doctor said my #'s were fine. It could help you to understand. My ankles went numb then my legs. No one knew what it was. It was hemoglobin going down so fast.  Take care

[Dee1956]

Hi I just wanted to say you are not alone. My doc tried to tell me hair loss was rare. What a jerk he was. I had muscle rigors he said I needed to go see my doctor.  They lie..tell us no other patient has complained just to make us go away. I finally spoke to girls at the desk. They told me people were arriving with retirement paperwork. There are people who have no problems but I think they are rare. Everyone is different so we all experience treatment differently. Don't let your doc fool you. Hang in there. Dee

[dontworry_behappy1]

Your doctor claim is an unawareness of the side effects of this treatment?
Doctors are aware and know for some its very difficult to do the treatment.
These are very strong drugs and are different for everyone.   I treated with
Incivek.  It was extremely hard to stay on course.  For some it was even
harder.  Then others didn't even seemed concerned about the side effects.

The fact is,  there are side effects to these drugs.  There are not free of side effects for everyone.  The hair falling out etc. etc etc.  is a possible side effect for some.  Along with the other side effects your experiencing.

I was always surprised the blank look on the doctors face when I said I was having side effects.  It was like they just didn't hear you.  This isn't new but you can prove the sides.  Here is some links to the side effects
you are experiencing.  Make a copy of the below links and email them to
your doctor.  Not sure what they can do..... because I don't think they honestly have an answer.  

Hope this helps you understand....best to you


http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605018.html

/www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/sovaldi/sovaldi_patient_pi.pdf

[Livelife777]

Punkey.   Just an afterthought regarding treatment.  I honestly tried to sleep my way thru treatment when I could.  Know that's not the courageous way to go, but it worked for me!!!!
I viewed it as a much needed restful vacation without guilt.
......Kim

[hepc4Sandi]

Your symptoms are all caused by the Riba. Hang in there. As far as your face is concerned, you must stay out of the sun, totally! I used baby oil on my body the whole time, and tons of lotion on my face. Your hair will recover over time, I read where some people went to very soft bristle brushes, it was one of my first Sx (side effects). You may want to try some argon oil on it. Are you eating enough? Get some more oils in your diet maybe, I added coconut oil to mine. The payoff is so worth it, you are 3/4 done, don't give up! You can do it. It is ok to complain and be afraid, but know you can do this! Many of us are in our 60s and 70s and are getting through this, and so can you. Let us know how it goes for you, what you are experiencing is really typical. Doctors really don't know these Sx, though my nurse did.
~Sandi

[hepcandme]

In defense of doctors, they just don't know about all the side effects yet

These new drugs are just that - brand, spanking new - and we are the guinea pigs. Not complaining here since the alternative to treatment is worse but - just hang in there

At least, in treatment, there is a beginning and a goal to reach the finish line with what could be (and is, more and more often) a Huge pay put in the end

SVR!!

~ Linda

[Livelife777]

Hi Punkey.   Every side effect you are mentioning is normal.  You are absolutely perfectly fine.  I did the exact same treatment of Sovaldi/Ribavirin with the same dosage.  400/1200.  It *****!
That's the way it goes.  You must NOT quit.  What is happening to you also is that you are creating sooooooo much anxiety that you are experiencing more symptoms such as hot/cold.  This is all anxiety related.  Trust me I know!!!
Now....You must try to chill out and accept that its going to be ruff for awhile.  In the end you will look back and find that it was so worth the effort.  The best thing you can do is to try to distract yourself from all these strange side effects.   Excersise will help rid you of anxiety so go for long walks.  Think positive thoughts, read interesting books or watch movies, lunch with a friend.
Getting out into nature is very calming and soothing for some reason while on treatment.
Know this is temporary.  You are doing this to stay healthy and keep telling yourself that.  You also may want to ask your Dr for an antidepressant as that will help you to get thru it.  
Sometimes in life unfortunately we have to be challenged.  This is one of them.  You need to stay strong.
We are here for you my friend!
......Kim

[keepingOnkeepingOn]

These appear to me to be sides from Liver disease. You are stressing which is not good on tx. Most sides are mild but noticeable. Again what you describe are liver disease sides. Your body is fighting the virus. Stay calm. After tx my hair grew in thicker after always falling out in big handfuls before tx and hey it's growing now after 4 years of stopping. Now I have to even use razors again. Can you use baby oil on your skin when in the shower? A friend who cleared on Solvadi Riba (GT2) was mildly sick during tx. It's not unusual. Hang in there. This is better than nothing. Can you graze on yogurt and such? Are you having a reaction to the foods you eat combined with the meds?

[patra_]

Go to the Hepatitis C Social Forum (click the Forum button at the top of this site and go down til you find Hepatitis C Social), and read the short sayings, quotes, jokes and banter back and forth.  It helps me keep a positive attitude and, I hope, it will you, too,

Hang in there (and get a really good, creamy lotion and use it often) : -)

Pat

[punkey77]

Not to worry, I am a book writer too!!!
I am usually on the warm side, but it is pretty cold where I live, so thus maybe the chills. I went to my present Dr on Dec 4th for the 1st time, I did mention the chills & that's when he said he never heard of that symptom? This Dr. took a full panel blood test {drew blood in his office & sent out}. Said my results showed I was clear, I am assuming that meant my viral load was -0-? He also said no anemia or any other problems @ that point (6 or 7 wks on meds}. Now we will see after about 15 weeks!!  It is a pain when you feel so lousy to have to travel to a lab.
That dry cough another side effect, I had from about the 3rd wk, thought I was choking to death!

This is probably the 2nd time I wanted to stop the meds, but I have, so far, braved it out. Just so down lately I start feeling sorry for myself!

Thanks again for your help & everyone on this site.

[punkey77]

You all have been great, & I have been on this site for a few months. Yes I have been drinking plenty of water & funny that watching comedy shows & not the super depressing news was what I have been doing for about a month now!!

Nothing has worked, so far, for my skin and my face is almost like it has been burned!!  I will keep trying though.

My main fear is not pushing through the side effects, but having possible long term effects or problems a year from now!!! I always felt chemo killed cancer patients faster than the disease, but that was before the advancements in the last 5 to 10 yrs. I am torn because Drs seem to have less knowledge in this field & truthfully I do not have a lot of trust in them these days.

[patra_]

First post meant to say anxiety - not ANTIANXIETY.

Second post meant to say please don't STOP your tx.

Good luck! Pat

[patra_]

Oops touched the wrong thing - my happy fingers!  Part of the brain fog?  Could be, or just not good on an IPad.  anyway,

Coldness:  YES!  I have never even mentioned that to my Dr as I have always been cold natured and, way back when I started on tx, there was a post talking about that very thing!  I thought, ah, they are like me, but found that it was more than that.  I keep a hot pad in my chair, one by my bed, wear long socks and bundle up, part of the hemoglobin drop, or just a different side effect?  I don't know, but it is improving since last meds, not all at once, mind you, but as time passes.  In fact all of the above that I experienced have.

There is also something we call Riba cough, a hacking, not deep, cough, that seems to come from sinus drainage down the back of the throat.  I take either a 25 mg Benadryl or a 4 mg Chlortrimiton, to help with that.

Now, to the Dr knowing about all this:  My Dr knew about the fatigue, weakness, and something else.  He also didn't know about all these other things.  I think most doctors don't.  They know what the meds post and they, too, don't go into detail on these.  I just made it a point to mention the ones that bothered me and what was said on this Forum to expect/ treat with, so, if it comes up again, he will have at least heard of it.

I think most of us don't really think about all the 'little' things because we KNOW we aew on powerful meds and expect these things based on what friends/family on chemo have said.  

Please don't arop your meds!  The BEST treatment I have found for ALL of them is KNOWING that others have also suffered one or another of them, so it is a 'normal' reaction to the meds.  That kept me from freaking out and reduced the anxiety level, because I knew what others did to treat the sides, or, like the hair, that it would clear up after treatment.  It may take a while, til the meds are out of your system, but it will be all right.

Take a very deep breath, exhale, relax!  That is one of the best things to remember.  Anxiety is our worst enemy!  The more positive your attitude, AND the more water you drink, 1 oz per lb, up to 1/2 your body weight per day, the better you will do.

You may want to make a copy of this so you can go back and look at it from time to time so you can remind yourself it is going to be fine.  

I am very anxious to hear your Lab work results.  Please be sure and post them when you get them.  I can't believe your Dr didn't do a 4 week and 8 week viral Load and Liver Function Lab!  When you see the numbers get better, that in itself, is a great shot in the arm (or psyche! :-) ).  

If these thing I have mentioned don't work, aske about the particular one(s) and someone who had thar one will probably respond with more specific information.

Didn't mean to write you a book!  Hope this helps!

Keep on keeping on!

Warm Hugs,   Pat

[patra_]

If you look at some of the older posts, you will see almost all of the side effects that you named, mentioned.  Not all with one person, but all.  Also, many of us (also a Gt3) have several of those, but not so bad that we do more than note it, bacause we have seen those sides (sx or side effects) mentioned by others.  

My biggie was the fatigue, tiredness.  That comes from the hepc AND from the meds, especially the Ribavirin, if your hemoglobin goes down.  It does in many of us.  It gets better as you progress, especially if your hemoglobin come back up some.  Mine did enought that I was able to get out and around to do a few errands, etc, but I did use a walker off and on, when I was out and about, because of the weakness - I really didn't want to fall and break something!  AS FOR AGE, I am 73, and seem to be doing well post treatment - getting energy back, put the walker back in the attic by the 2d or 3rd week after last pills, BUT we are over menopause, we have Gt3.  Also women seem to have more side effects than men.

Are you drinking LOTS od water as we have all suggested.  That seems to help many of the side affects.

Hair:  Many have mentioned that problem.  I have such fine, thin hair, which I keep cut short in a sort of pixie cut so have not noticed that.   ALL who had/have hair loss, say that it came back/is coming back healthy by about 4 months post tx.

Skin:  The redness and itching might respond to a good lotion, or a medicated lotion.  I use Gold Bond Medicated Lotion, in the green bottle and it works for me.  Others have used the oatmeal baths and that helped them.  Still others had to get a prescription from their Dr or dermatologist to ease it.

Depression:  Some have mentioned it, and had to get antianxiety meds or something but I have not had that problem, so have no in-put.  We all have talked about just watching happy movies, comedies, nothing serious or depressing, I quit watching the news altogether, until just recently and now, only little bits at a time.  Still have the emotionality - cry easy, laugh hard, etc.

The irratibility is caused by the Ribavirin also, and is known as Riba Rage.  Most of us have mentioned various coping mechanisms. ,Mine is to go to bed, away from people, or my husband will ask, 'Are you tired, do you need to rest' our signal that I am getting grumpy, so I can chill out, or go lay down.

The brain fog, we all started with and it improve, to varying degrees, over treatment.  several have talked about improvement post treatment.  I have experienced that, but it was so bad that I was not driving from about the 9th week until a while after tx was done.

[Rbeth]

So sorry you have an idiot for doctor too!!!
Kinda wish they all had to experience Tx before they prescribe!

I don't know Riba, ( SOV/LDV) but many on here do~ 1st to mind... Talk to ekkiemom~ she just recently ended Tx.... You won't feel alone anymore or nuts!!
Many on here should & will encourage you, from all I've read!

Hang in there!!
All hope for you,
Randy

[dontworry_behappy1]

Here is a link to a list of abbreviations

http://www.medhelp.org/posts/Hepatitis-C/abbreviations/show/488836