Response to Everyone

Thanks to all of you who responded to my post for your input and concearn. I'm glad to hear from my old friends again. I'll try and answer the questions. No, I never cleared in three treatments. Sam-E is on sale at least once a month at Sav-On drugs and probably in more places as well. Get the Double Strength 30 tabs. At 2 for 1 sale it equates to $40 + tax. That will keep you going for two months at one pill per day.

As long as I'm not progressing, I'm very happy. I have bloodwork every six months and will have again at the end of this month. I look very closely at Iron contents in the foods I buy. In cereals, vitamins, vegetables in restuarants, etc. The doctor said to shy away from Iron and spinach.

The most brutal treatment had to be one shot per day for two months, but what is most amazing of all is that my ALT and AST levels are lower now than they ever were while on treatment! I wish you all the very best of luck. I will be lurking here in and out and let you know what's happening. Never give up! Damn the torpedoes! Fight for your treatments and new advances. No one will come knocking on your door to tell you about them. You must always stay on top of it yourselves. Most of all, remember than many many more people got to their graves with Hepatitis C rather than from it!

Magnum

[cindee]

Hi, I just wanted to let you know I am hep c geno type1A. I started w/ viral load of over 6 million. I did 48 wks of ribavirin and 1 shot of pegasys on Fridays. At my 1st 12 wk blood test I was undectable (EVR). Every blood work after that I was still undetectable (SVR). My liver doctor was a GI. He wanted to wait until 6 months post tx to do blood work...well I could tell I wasn't feeling "just" right, so I begged for a 4 month post tx blood panel. Well I thought because of all the above info and the fact that I had a very rough time w/ sx. that I would surely have cleared. WRONG! I had relapsed..viral load went down to 1,930,000, so I know I did some damage to that nasty 'ole dragon. I was really dumb about Hep c and at the 1st visit w/ my GI he told me he only treats once. So I said okay.

I thought I has a good doctor because we got along well He didn't however explain any #'s to me. He told me to let him worry about the #'s...again I said okay. It had been long enough to find out results of bllod work @ I hadn't heard a word. So one day my hubby @ I had been to my pain specialist, and we decided to stop by GI's office. It was close to lunch time...ad the recept. met us in the parking lot...she was the one to tell me I had relapsed! So they sent me to Duke University to see if I qualified for a clinical trial. The Duke doc told me I needed to treat again. I asked him if he had heard of a Dr.Reindollar in Charlotte, N.C. and he said yes, and he's very well respected.

So I saw him this past Friday. He does clinical trials and said my reason for relapse w/ my EVR @ SVR's and then relapsing is what has the Hep doc's baffled. He also does liver transpants. He ordered blood work...lab in his office..a great thing..and is ordering a bx. When he gets all results....he says he has 3 tx that I qualify for. So I am very excited to get started. He said the only bad news is that he is sorry I will have to suffer w/ hep c for about 4-6 months and then the trial would begin. EVERYTHING WILL BR FREE! I am so happy about all of this and I will keep you informed on the out come. If you are a relapser I would try to get on a clinical study, if you haven't already. I will be praying for you, and look forward to hearing from you. I absoutely HATE this disease and I know you do too. Much love and many prayers, Cindee

[Invictus]

Sorry to butt in on this thread but I have a few questions I wonder if you could be kind enough to try to answer:

I did shot one Friday night and was cruising along with no problems until yesterday (Sunday)afternoon - practically a full 48 hours after the shot - I had a heckuva coughing bout and then suddenly felt like a freight train plowed into me and I got chills, shakes, body pain, etc.  Is that normal?   I mean 'normal' for the chills to hit so long after the shot -  God knows there's nothing normal about feeling like that!!!

The doctor told me to drink 60 ounces of water a day (I weigh 115).  But that's less than what a healthy person should consume (8 - 8 ounces glasses a day).  So do you suppose he meant 60 in addition to the 64 ounces?  Either way, I've been drinking about 128 ounces of H20 to be sure.  Do you think that is sufficient?

Is it okay to take the Riba along with my other meds (Protonix, Colace,  Biotin, multi-vitamin)?  Or do they need to be spaced out? (speaking of spaced out . . . I am Space Chick this morning - feel like I'd fit right in on the Starship Enterprise.  Oh, Scotty  be a nice man and beam me up!)

Now here comes my girly question - the doctor said it was okay to continue going to the tanning bed.  What do you think?  It's not the tanning I crave so much, but the relaxation of the ritual and doing something nice for myself.  But I noticed yesterday that my skin already feels a little sensitive, and the last thing I want to do is set off one of those awful skin conditions I hear folks talk about, so if that means I must revert to my natural fish-belly-white color, so be it.  But I wonder what any of you have discovered about sun exposure.

By the way, I'm using a lot of the tips and hints I've read here over the last few months, and thanks everyone for sharing.  I wiped the tip of the needle off before injecting, and left the needle in a long tme after the shot, and had no injection site irritation at all. Using Nioxin hair care products, Biotin toothpaste and mouthwash, taking biotin supplements, etc.  All good, sound advice and I appreciate it

Well - guess that's enough questions for one morning - there are sure to be plenty more.  Thanks everyone for your support, and I wish all of you the very best in every aspect of your lives.

[layla]

I have been in a tanning bed on tx. I don't highly recommend it as it did increase some of my sx. The meds normally do cause you to be more sun sensative and that is indicated on the pamphlets. In the summer I have to carry a light weight cover and a hat if I will be out in the sun for any extended periods of time. I am ok for awhile but the sun is a problem. If you do go to the tanning bed I would not go your normal time, but take it slow and see how it affects you. For me that was ok at first but the problem built up quickly so I stopped going. I am in the sun allot for a variety of reason and I am always having to look for shade and extra water. I think it will be obvious to you fairly quickly. Good luck.

I hope everyone is doing as good as can be expected. I am very busy and very tired so I haven't been here much. Week 64 now Take care.
LL

[cuteus]

I was told from day one to avoid direct sunlight and with the first shot, I did get sunlight on the site and it became a large, round, bruise-like irritation that stayed for weeks.  I would not use tanning for relaxation either.  

As for the sides, some get immediate reaction, some delayed. like Scott said, things adjust in your body and you get milder reactions later on.
One thing I noticed in the latter half of my tx is that I get rundown and achy a day or two before shot day.  sometimes so much so, I get tempted to take my shot earlier, thinking I am running out of inf and need to keep it leveled.
I wonder how many people get this? Does any one get the worst symptoms before or after the shot? I believe that in the begining it was after, and the last 5 months it has been before. Any one else noticed this oddity?

[tuna]

I feel the best the 2 days before shot day and I belive its cause the peg from the previous Fri. shot is wearing off. My sides seem to start 36-48 hrs after the shot. I'm at the end and my sides have been the worst the last 4 wks than at any time of tx. has anybody who is done noticed that? One more to go 47/48.

[Fubarcat]

I would not get in a tanning bed either.  I know about a month ago I was out in the sun and got burned to a crisp.  I have naturally olive toned skin and have never, ever burned before treatment, but this treatment dries your skin out so bad, that I think a little bit of sun goes a long way.  Just better to be safe than sorry.  And, dontcha know????  Nicole Kidman-pale skin is the newest thing.  Stay pale and stay well!

My sides from shots (naps, muscle aches) have always come 48 hours after shot, so that would be nothing new for me.  Everyone is different.  Next shot won't be so bad!

[Invictus]

Thanks everyone for all the fast replies and good advice!  Thanks for sharing your experience with the tanning bed, Layla.  I was hoping to hear from someone who'd been there/done that - sounds like   Fubar's remarks are right on the money:  "Stay pale and stay well!"  And after Cuteus' experience with sun on the injection site, I'm convinced.  I'm a redhead, too, so Nicole Kidman white is where I'll be in another week or two!!!  Now if I could only figure out some way to be six feet tall, gorgeous and rich I'd have it made!

Also thanks Tuna and Fubar for letting me know you had delayed shot reactions, too.  Knowing that makes me feel much, much better.  I was starting to wonder if I had screwed the shot up somehow!

I do meditate (while listening to Gregorian chants most of the time) and practice yoga, and that's always kept me on an even keel.  I'm relying on that and prayer to help me keep my cool in the days to come.  That, and turning to all of you for your kind support!

I appreciate you all more than you can imagine!!

INVICTUS

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll
I am the master of my fate;
I am the captain of my soul.

William Ernest Henley

[Showboat]

Sounds like you already got alot of good advice here.....but I just want to make sure I read your post correctly about wiping the needle off before injection.  I do not think you should be touching the needle with anything....I think you may contaminate it.   I was told to tap the side of the plastic "holding tank" and knock the little drops off..never to touch the needle itself.   Maybe I am just being paranoid about it, but perhaps others can add something here.  I know we do have a few nurses that are members of this site, maybe they will comment further.  Hope you are well.  Peace.

[ringeding]

opps...caps.....hi there invic....and congrats on starting and welcome......as for the tanning, hahaha i can tell you with great certainty that you should NOT at least for now and for a few months after tx is completed...i have to agree with chevy..my fair skin actually looked really lovely for a change as i was so used to tanning....everyone started comenting how nice i looked..DURING TX because i was not tanning, .i am a diehard summer tanner myself, however.....i will tell you that after my last shot, i jumped on a plane the next morning to visit friends for a month in costa rica...well the very first day...i laid in the sun, for a short while but ended up with severe allergic reaction due to the peg/riba in my body and was not able to even have sun through the window touch me....so cut the trip short and came home...sadly i STILL have little red marks ...its awful, all in the prusuit of 'looking healthy and tanned' haha...

as for the syringe...i have always made sure that i wiped the needle gently with an alcohol swab provided in peg.....this removes any residual peg from the needle, which is what you will react to if your going to...the peg, when touching your skin, sits there and eats away at cells thus causing the red marks etc....just make sure to allow a minute for the alcohol to evaporate and dry before injecting okay....

hope this is helpful...take good care sweetie!!!

kimmy

[MajNeni]

I definitely second Showboat:  I wouldn't touch the needle tip with anything! It comes sterile; if it's contaminated, toss it (in your safe sharps container).  You can get extra neenles.  
I was told to wipe the top of the vial with alcohol; shake off any droplet on the needle.  OK, you have to let the alcohol evaporate: on your skin, on the vial.  If alcohol gets into the shot site, it burns/stings/hurts/etc. like crazy.  Learned that from the nurses giving my allergy shots.
Another wonderful tip I picked up from a nurse, in case you're injecting on the top of your thigh.  Make an imaginary line from the front of your pelvic bone to the center of your knee.  Pain nerves are concentrated along that line.  If you stay an inch or two to either side, you're less likely to give yourself a big owweee.
Maj Neni

[cindee]

Hey girl! In answer to your question about feeling bad "after" the shots at first.... and toward the end of tx......feeling bad a couple of days "before" shot..... I thought I was the only one!!!! LOL

Even my husband noticed it, and mentioned it first to me, when I was on tx. TX is a " weird" thing. But I'm all ready to "start" again! Hope you are feeling good these days.

I've been spending lots o $$$$ on QVC !!!!!! It feels good to have things brought to your door.....and hubby says I deserve it!!!!! LOL I might be sick, but I'm gonna be a "very well-dressed" sick person!!!!!!LOL    Best wishes and much love @ many prayers, Cindee