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first shot-no sides
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first shot-no sides

Hello. I am new to the forum but have been reading since my Hep C diagnosis was confirmed in Nov.12. This is a very helpful forum and it has been a great source of information as I have made the decision to treat and hopefully eradicate this disease. My journey began with a dermatologist that diagnosed that I had PCT when I finally went to him about blisters and cuts on the backs of my hands that would not heal ( thought it was a reaction from cleaners that I was using on my boat, but after 6 or 7 months they wouldn't heal properly). From there the journey began and continues. My doc immediately tested for and confirmed HCV. I'm a geno 2 with an very very low VL (initially 470 and now 910 at start of treatment). I have 0-minimal liver damage and my hep doc recommended treatment as I am a good candidate to clear. Long story short (if that is possible with this process) I took my first shot last night. I have had no side effects other than a little crappy feeling first thing this morning. Took the shot at 6:00 pm and some advil. Slept through the whole night and even slept in this morning for a change (always an early riser). Has anyone else had an uneventful first shot? I'm using the Pegasys ProClick (easy and painless in thigh) 180mg and Ribasphere 1000mg (24 week).
Also, anyone else out there with PCT and no/ minimal liver damage?

Thanks
18 Comments Post a Comment
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766573_tn?1365170066
Greetings and welcome to the forum. Side effects vary from person to person but when I was on dual therapy (Peg Interferon & the Riba) all of my shots were pretty uneventful. I only treated for 19 weeks and I was able to work and travel as well as many other things. I was not at my best and I had some bad days but I think I was pretty functional. I did not clear the virus though.

Anyway, it usually takes time for the sides to kick if they are going to at all. I am glad you are feeling OK

I understand there is a strong association between porphyria cutanea tarda (PCT) and chronic hepatitis C. I hope treatment it clears it up for you :)
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Avatar_f_tn
Hello and welcome to the forum! Congrats on taking the first shot no turning back now!! I was really nervousness at first about all the side effects I was actually in bed sick a week before I took my first shot due to how badly I stressed about it I pretty much made myself sick lol but I came to find it was nothing like I accepted!! My first shot I had absolutely no side effects and last Thursday I took my sixth shot and my status is still the same I don't feel any different really! Like you I have a pretty low VL not nearly as low as your (my start was 14500) and I also take the peg and 1000mgs of RIBA! So far everything has been good so good it lefte questioning weather there's are even working on me but just like idyllic said everyone reacts to these meds differently! I hope I keep on feeling alright for I just took in a assistant manager position! I've been on the third medication for a little over a week now (victrelis) and it hasn't set anything off yet thank goodness!! Will you be using a third medication if so which one!!!
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Avatar_f_tn
Expected**
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Avatar_m_tn
Thanks for the response. Hopefully they remain uneventful. I'm feeling a bit achey (achy) this morning but about the same as yesterday. Seems to get better as I move around once I get up. My job requires a great deal of travel so I'm hoping that this stays manageable especially during the week. The PCT is under control as I had 4 phlebotomies prior to starting treatment. I laugh every time the doc wants to run blood tests and remind them that there are 4 pints going to waste...that should be enough to study! The treatment should also put an end to the PCT (I still get nervous every time I brush my hands against something...they would cut very easily).

Thanks. You said you didn't clear? Are you retreating?
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Avatar_m_tn
Thanks. Glad that you have got the ball rolling too. You are right, once the needle went in my commitment started (swallowing a pill is easy enough). I will not be using a third..standard for geno 2 is dual therapy. Good luck with your new position and I hope your treatment continues to be manageable!
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Avatar_m_tn
Sorry bad choice of words in my last post...not "retreating" but are you doing treatment again?
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Avatar_f_tn
hi welcome to the forum and im glad that you got no sx everybody reacts differently but i know that achey (achy) is a very common one. Good luck with rest of tx and keep us posted
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Avatar_f_tn
Best wishes on your continued success with no sx.  What a great thing if your treatment can cure you of both health issues!  If you do start seeiing some side effects, get on top of them as quickly as possible - as one of the forum members said to me about my husband "there is no reason he should have to suffer with sx".  here's to an uneventful and fruitful treatment!
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1815939_tn?1377995399
Welcome to the forum. Great that you are having few or minimal side effects.

Just wanted to comment on the PCT. I see you also had 4 phlebotomies prior to Tx. You must also have hemochromatosis. I know PCT and hemochromatosis often go hand in hand. You did not mention any iron tests but someone else on the forum who has hemochromatosis posted this in another thread. "In order to diagnose iron overload you need to have a Serum Iron (SI), Transferritin Iron Saturation % (TS%), Total Iron Binding Capacity (TIBC), Unbound Iron-binding Capacity (UIBC), and Ferritin." I am assuming you had all of those tests before you had the phlebotomies. (At Stage 3, she has more liver damage than you do.)

There are a few people on the forum with these two diseases so some of them may post eventually. I do know that hemochromatosis is associated with an increase in liver fibrosis so it is beneficial that you are treating now before you get more liver damage.

Here is wishing you a treatment with few side effects and a sustained virologic response (SVR).

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2740200/
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766573_tn?1365170066

Sorry in advance to come off as a mother hen or a busy body but I would not mention this if there had not been a flurry of mishaps on here lately. It is often up to us to stay on top of these things ~ especially our blood counts and PCRs.The mention of phlebotomies bring up a good point. Do you have copies of your labs? If not now is the time to ask and organize them.

At minimum so far there would be your your initial PCR (with a viral load), your genotyping, your baseline labs and, reports (the procedure that enabled you to see you are stage 0), your PCT labs and your baseline labs.

Your baseline labs would include your CBC (Complete blood count), CMB (complete metabolic panel), TSH (Thyroid Stimulating Hormone) and, PT/Inr and a few others. As suggested maybe even a few iron panels or serum Ferritin.

I know this might sound like a lot but you will be able to interpret the pertinent values and how the effect you in no time. As you will see keeping tabs and copies of you medical records is very common and (imo) a must with treatment or even maintenance of chronic long-term disease.

★¸¸.☆ Another crucial set of milestone labs that often gets overlooked is your four week viral load.  Be sure you have an HCV PCR scheduled on the morning before you take shot 5. It really helps when you have your viral load draws at the exact right time★¸¸.☆ .

* Here is the HCV Advocate Fact sheet on PCT
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/PCT.pdf
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Avatar_f_tn
I am glad you had a competent dermatologist.  I have PCT also along with Hemochromatosis.  Like you I thought it was chemicals, Round-up, that caused the blisters on the back of my hands.  So I went to the derma and he thought I had poison oak, which I have never had in my life, and put me on steroids and a topical cream.  It cleared up.  Then the next summer the same thing happened.  So this time I went to my GP and he ran a ton of bloodwork.  That is when I found out I had Hep C.  So it was over a year before I was dx.  Then my GP sent me to a Hepa specialist and during our first consultation he said "you probably have Hemo also".  And he was correct.  My iron levels were through the roof and, as Pooh said above, can and will cause considerable liver damage if left untreated.  I am G2/S3 GT1b, CT.  And after 36 weeks of tx I am having a PCT breakout now.  So it didn't help my PCT for some reason.

I am glad you have 0 liver damage.  That is great news.  I hope you beat the Hep C and PCT!  

Best of luck
Jules

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Avatar_m_tn
Thanks to everyone for their greetings and input. This forum is great. I've never been much of a forum or blog guy but once this started, I knew that I wasn't alone after finding this community. Many times things get lost in translation even with the ones you love and are closest to. It is good to know that there are folks just like me facing such a huge challenge.

To answer some of the questions and concerns. I do not have Hemo. You are right, my dermatologist is the best. I knew something was up because after he looked at my hands he brought another doc into the room. Both studied my hands and he started explaining what he thought it was. I thought I was going in to get some ointment but instead it looked as if I was going to make the cover of a medical journal! Lots of white coats in one day. From there the labs for a 24 hour urine quarantine and blood work was ordered then on to my doc soon after. Pct confirmed then on to a Hemo. No hereditary gene mutation found but definitely sporadic PCT (caught early, ferritan at 589 upon diagnosis..now at 120). Up to 80% of sporadic PCT cases involve HCV so that test was next and so on and so on. I can probably relate my PCT to the obvious chronic HCV and many years of the daily after work cocktails or beer! That stopped upon the diagnosis.

As far as keeping close tabs on my labs, bx, etc. I have a binder that is getting bigger everyday! I am a very regimented individual (sometimes to a fault...but not in this case I think). Been studying and preping hard ever since the diagnosis.

As I said before, I hope the sx stay minimum but I'm a realist and I'll stay diligent! Everyone's words of encouragement will stay with me through this journey. I wish everyone in this community the best outcome and look forward to seeking advise and support and perhaps giving that in return where I can.

Thanks again!
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Avatar_m_tn
So glad your first shot went well!
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Avatar_m_tn
Glad to hear your starting out with min side effects. I did also the first few days, then it all changed. Peginferon hits highest blood levels in 60 to 72 hours and ribavirin 4 to 7 and they accumulate in tissue over time, evening out the days. While I got used to the effects..the over experience was that of feeling worse some, most, then all the time...but easier to tolerate also. Over the first few weeks my emotional and physical state coincided. This allowed me to plan for active times and chill times. The bad news was the wild fluctuations in how I felt. But as time went on (24 weeks total) the days and moods ran together and it was all a downer but at least the down days were not as bad...but no active days since about week 7 or 8. I began as someone who works full time, weekend yard work and exercises 6D/wk. I planned to continue this through treatment but after having to continually shorten and slow my roll...I ended up a couch potato by week 15 or 16. I got mildly anemic and severely neutropenic (390) and had to take neupogen for it which caused bone and spleen pain. Now 3 1/2 weeks post my 24 wk treatment and I'm back to working out about 1/4 of my previous (took the first week off) and only have minimal ribavirin itch now, no lotion needed this week. Every day is better than yesterday. Glad to hear your starting out well and hope it continues (it does for some), but be prepared for a long haul. BTW-  I found that giving the peg shots very slowly (over 2 min) and deeper in the fat tissue prevented the local skin reaction, taking rib on an empty stomach was a real drag and the rib itch thrives after a hot chlorinated shower (keep it short and tepid) and stock up on skin lotion...apply immediately after showering. Also, I used a soft shower brush to scratch the itches (helped some and gentle on the skin) and to apply the lotion to my back when my wife was out. Good luck...
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Avatar_m_tn
I really appreciate the advice! Great forum with many well informed people. In fact, this community has been a huge part of my HCV education since diagnosis. Still feeling pretty good since my last Friday evening shot but I can feel some things creeping in (dry skin as you mentioned, some fatigue , few minor aches). I took vacation this week to kind of monitor things as I travel often with my job but I won't take anything for granted as I know from reading the posts things could change without notice. Between an excellent treatment team, communities like this, and my own quest to know as much as possible about the process I hope to keep facing this head on. Getting set for round 2 tomorrow (dart night!).

Thanks again!
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Avatar_n_tn
Just wanted to say welcome and what a great attitude!  Hope you can keep those sx from rearing their ugly heads. If they do show up, as you have probably already figured out, there are so many knowledgable people on this forum that if you have a question you will get an answer. Wishing you the best!
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Avatar_n_tn
Just wanted to say welcome and what a great attitude!  Hope you can keep those sx from rearing their ugly heads. If they do show up, as you have probably already figured out, there are so many knowledgable people on this forum that if you have a question you will get an answer. Wishing you the best!
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2114467_tn?1358213856
Round 2. Good way to put it; in the fight. Keep your good attitude and before you know it you'll be at tHe other end.
C
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