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went doc yesterday

doc said i had 1A with vl of 2.4 mil he said i could take infergen & riba but he said i should take a shoot a day instead of 1 a week any thoughts on weather i should 1 aday or 1 a week he left it up to me what do yall think?
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Avatar universal
Hello there,
I was quite squirrely when I went on tx.  Got hit real hard with the sides from day one.  My vision and ringing of the ears first started when my blood counts dropped. For the ringing in the ears, I just keep a back ground noise, at all times; and it drowns out the sound of the ringing.  When I go to bed, the quietest part of the day; I set the timer on my TV and fall asleep that way.  It works; in fact I have done this routine for awhile now and I seldom hear the ringing in my ears.  I,m afraid that it will not go completely away until the blood counts go back to normal.  For your husband, his blood work should give you an idea of the ringing in ears.  And, maybe he should see an ENT doctor; since he does have it pre-existing; just a suggestion.  Do not know if there will be a resolve or assistance but it can't hurt.

Vision Problems:  Has he had that yet.  I see it is a big topic these last few days here.  Again, blood counts is a factor.  Doctors say it will clear up. In fact, for the last two weeks or so, my cbc's have stabled and even went up a little; and in that time span, my eyes have gotten better.  Still blurred a little at times, but for the most part I can read again. Now that my vision is better I will probably post more often now.  But, I am also trying to force myself to have a normal life; if that is possible on this tx.  So, I have been trying to get out when I can.  Go to functions, grocery shop again (hubby has helped there) get back to the normal things I used to do. I think since I decided to start on AD's and anxiety meds, things will be even better. Since spring has been in the air, I have started spring cleaning and planting in my yard; I love planting flowers of bright color all around. I have learned to do this in short time spans, if you go to long and hard it will kick you b*tt and exhaust you.

What are the stats of your husband. Geno, Stage, VL, What shot, etc.  Hope you see this post, and I will keep my eye out for you.  Keep posting, especially if you have questions.  You are a wonderful wife to do this for your husband.  I wish him the best on tx, and I wish you the best too.  Don't be shy; and I will try to post more often.

Have a great day.

CAJUN

Helpful - 0
Avatar universal
Infergen has a safety profile almost identical to that of the other alpha interferons. The side effect profile is practically identical to that of the other alphas. The re-treatment SVR rate is similar to that of the other alpha interferons. In short, there is not a whole lot of difference. (alfacon 1--166 amino acids, alpha-2a and 2b---165 amino acids. All have identical sequencing between 115-151.The plasma levels reached by daily dosing are more steady but there's not a significant difference between those levels and those achieved by Pegasys.

However, if you truly felt this was the best IFN product, then as a doctor you would be compelled to prescribe it.Naive or not.

Valeant (InterMune) chose to resubmit their IFN as a tx for non-responders and relapsers.(This stuff's been around awhile) So, this is what is on the label. It means nothing. You can use it off-label any way you like, including for tx naive-patients. Many docs prescribe off-label for their patients. For example,Roche doses everyone at 800 mg of Riba. Many docs will ignore this and weight dose the riba. Off label prescribing is quite common in the world of HCV.

Infergen could not bundle with ribavirin for legal reasons (years back) and their product was a monotherapy with no significantly better success rates as the other alpha monotherapies. I did know a few who used alfacon 1 and got rx for ribavirin from a compounding pharmacy to use in adjunct therapy. I used to get riba from a compounding pharmacy and it tested out consistently higher in strength and purity than ICN's product.You can still order it this way if you want to.

Infergen is still a monotherapy but almost every doc prescribes Riba (off label)with it now that the legal issues have been resolved.

PK



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Avatar universal
I can't believe you are as far as you are. You probably won't see this but I have been browsing this site for a while and remember you starting and getting the ringing in the ear. That scared me because I am on here for my husband. He has had ringing in the ear since childhood so how could I know if he is getting anemic? But I am glad to hear of your success and hope the best for my husband; of course. This is a later thread so I don't know if you will get and I probably wont see it. But best of luck to you. I missed you when you weren't posting because you were asking the questions I needed. If you see this look for me later.
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92903 tn?1309904711
To clarify, I'm not assuming Kel59 has the predictors I listed above. Just tossing them out for information.
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Avatar universal
well he did give me the choice so i think i will go with 1 a week & if that dont work switch to 1 a day later thanks for all your help
Helpful - 0
Avatar universal
Good advice because this makes NO sense in the world at all.

Definitely get a second opinion - viral load is NOT a piece of information that helps you decide on what meds to use or anything. Have you had a biopsy? I can't think of any reason a doctor would put you on Infergen daily shot - as a treatment naive person I'm not even sure if they really CAN. As far as I know it's for people who did NOT respond during the previous course.
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Avatar universal
i have had liver bx came back level 3 stage 3 brigeing fibrosis
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119874 tn?1189755829
Go get a second opinion.  My VL was 16.5 million.  I'm on the regular interferon 1 x week/ribavirin routine.  I think that's the norm for first time treatment.
Helpful - 0
105287 tn?1214327505
I'm a 1B with a vl of 1.2 mil with stage 3/3.  My doctor who is a hep dr, recommended we start with combo first.  I am under the impression that infergen is suggessted when other tx's may have failed.  You may want to get a second opinion.  Please note, no one here is a doctor and we cannot give advise, simply suggestions based on own experiences.
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Avatar universal
my first hepatologist offered me the same options, any med that I wanted for hep c, be it pegylated or not(infergen, consensus interferon) if that is what I wanted. There is no set guidelines, each doctor leaves(or should) it up to the patient to decide, after explaining each option and the possible sides. I chose Pegasys, but that is because I did not know how well consensus seemed to work on geno one. I might have done that first, or so I felt after not being undetected at wk 12. Or maybe not, knowing that sides seemed easier on Pegasys and I wanted to continue working full time. You have a good dr, if he/she has left it up to you to decide, but if he did not explain how each might affect you, that takes point off his report card.
good luck on your choice
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Avatar universal
2.5 MILLION IS NOT THAT HIGH.
PEG/INTERFERON IS THE LONG LASTING DRUG THAT REPLACED REGULAR INTERFERON.
I THINK YOU MAY HAVE A BETTER CHANCE OF SVR WITH ONE A DAY SHOTS AND WITH YOUR LIVER STAGE YOU MAY WANT TO CONSIDER THAT.
CHECK THIS ARTICAL.
http://www.natap.org/2004/DDW/ddw_04.htm
GOOD LUCK
BOBBY
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92903 tn?1309904711
Secondary to genotype, high viral load is a negative predictor of outcome. So is advanced fibrosis progression. Being male, African American, or overweight are also negative predictors.

We've had at least one other member here who started on Infergen Combo therapy. It's possible that more agressive Docs are starting to lean that way for tougher to treat cases?
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Avatar universal
I to was surprised of the treatment he wants to put you on.  There was a thread here awhile ago and they talked about how some DRs. get a kick back from drug companies to use their drugs in treatment instead of whats best for the patients.  I would get a second opinion before going any further.

Beagle
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Avatar universal
Kel needs all options to choose from, so I knew what you meant.

BTW--Did you or are you about to end tx?  How are you doing?

Beagle
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92903 tn?1309904711
Yup. I finished a couple weeks ago. Now riding the "Am I Clear" roller coaster.
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Avatar universal
I'm sure you will clear.  How do you feel, did you get your energy back yet?  If you did how long did it take to start feeling normal?

Beagle
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Avatar universal
See and my doctor was absolutely AGAINST starting off on the Infergen and said would ONLY consider it IF I did not respond to the Peg at all.

I am glad...it sounds very rough judging by Magnum and my doctor. I find the regular tx hard enough, rather than a daily.

but I would have done it if I HAD to but that is the point - it doesn't sound like this person NEEDS to so I am curious why not try peg/riba combo first?
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92903 tn?1309904711
Here's a <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12558913&dopt=Abstract">brief paper on Infergen Combo therapy<a/>. It looks like it's effective but not well tolerated. I didn't notice that they used any growth factor support drugs. Note that Magnum was taking almost <b>3 times</b> the dose used in this study.
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Avatar universal
As usual I am learning a lot from your posts.  I see my doc on 1 May to discuss tx options--since I am tx naive I will definitely want to try interferon first.  
Another important point I am learning from everyone is to keep my own records--so I will ask for copies of my med record to track my own progress and success-I want to be optimistic--:-)!!
Thanks again!

Rose
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Avatar universal
Wow - unbelievable three times the amount.  I tell you I would have probably done it too if the Interferon didn't work. We become so focused on killing the virus (and this I speak from personal experience) we can kill of 50% of our bodies before we stop.

We tend to be a VERY obsessive group in here. ;-)

I am SO GLAD you are SVR. As time goes by...I have a feeling the saying in here will become - well a long time ago there was this crazy guy Goofy and if he could do it...I know I can!  :)

I am SO HAPPY FOR YOU AND LOOK FORWARD TO ALL OF YOUR SUCCESS.
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92903 tn?1309904711
Thanks very much. But I'm not SVR yet -- I'd label it 'undetectable and cautiously optimistic'. I'll start breathing easier if I make the 3 month mark.
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Avatar universal
I've done daily shots for my last 2 treatments.  My others were usually 3 times a week, or once a week when I was on the Peg.  In my body, daily shots get me a better response, but they are a pain in the butt. Or should I say, a pain in the tummy and thigh? It requires a big committment to the treatment, to not get into the whole 'skipping a shot' here and there.  On daily doses, it's more important than ever to stick to the routine. I've done a daily shot, thus far, every day for the past 8 mon.  Another thing is, when I ever did my first couple of treatments, I really screwed up when giving myself injections and I ended up with lots of scars on my abdomen from injection problems, sores from the scar getting abcessed, etc.  Anyway, I have one 1/4 of my abdomen that I can no longer inject because of scarring due to this problem.    Now that I know what I'm doing and have I've got the shot giving figured out, I'm not getting any more sores or scarring.

Susan400
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Avatar universal
no i havent treated before but he said because my vl was so high was the reason
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Avatar universal
Have you ever treated before? The Infergen is apparently much harder than regular Interferon (Peg-Intron or Pegasys) so I am wondering why he would want you on that unless you have not responded previously?

Doctors common protocol is Interferon/Riba and unless you do not respond they don't put you on the Infergen until after THAT usually.

A daily shot has to be much harder than a weekly shot.  I'd find out why he doesn't want to start you on the common protocol and instead head straight to the hardest one. A geno 1 has a 50/50 chance of a cure that's pretty good odds!
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