Daughter newly diagnosed

[nerak124]

My 21 year old daughter was just diagnosed with Hepatitis C this past Monday. We have an appointment with a gastroentrologist/hepotologist in 2 weeks (the earliest we could get). As parents we are very worried. So far only a blood test was done and the doctor said he could feel that her liver was enlarged. She was in detox when diagnosed. (October 2009 she also spent a few days in a detox program and did not have this then) Can someone tell me what questions should we ask? What can we expect from this visit? Reading things online I see there is acute and chronic Hepatitis C. What is the difference? Are there any parent support forums?

[Jense107]

Because if she's a 1 and you treat in the first year you have a much higher rate of success. With 2 or 3 you can wait and still achieve SVR after seeing if your child is one of the 1 in 4 that fights off the virus on their own.

[Bill1954]

Hi Nerak,

I’m not sure how much value is involved in a biopsy for a twenty one year old woman. If she intends to treat her HCV over the next couple of years, any existing damage (fibrosis) would be halted by successful therapy. If she intends to postpone/delay treatment, a biopsy might be more appropriate; it could help determine if ay urgency is involved.

If it were my daughter, I wouldn’t put her through it; there probably isn’t much to find.

Good luck with upcoming treatment,

Bill

[nerak124]

Got the bloodtest results today. Genotype 1. Next appointment is mid March, Dr. said we will discuss treatment at that time but seems he is leaning toward waiting to the end of the year when the new drugs come out. Guess we will have to discuss doing a biopsy,

[willbb]

Great to hear that your daughter is 30 days clean!  If a biopsy is ordered, the incidence of compilications and infection is extremely rare  and the benefits of this test, if needed far outweigh the risk.

Glad you are all feeling great about the future and as I mentioned in my previous post ....with your daughter being so young and the future looking brighter  in regards to effective treatments,  she will have many options.

All the Best

WILL

[nerak124]

Had the sonogram a few days ago and the "unofficial" (from technician) report is good. Liver looks healthy just have to wait for the Dr. to verify. Bloodtest results should be in this week. Waiting is hard, although all of you have given me lots of hope. Even the biopsy scares me as that could cause an infection. Hopefully we won't need one. OK one day at a time, right? Today we are feeling great about the future, thanks to this forum. By the way, today, my daughter is 30 days clean!! We have that to be happy about.

[Trish77]

Agree with you on asking for clarification btw, on a serious note - never heard of the anal irritation issues for either boceprevir or telaprevir.  Could exist, some things people don't talk about on treatment, kind of embarrassing but still, hearing nothing?  I'd like to see the data also.  Just the same, couldn't pass up the wisecrack. ;-P

[willbb]

Sorry to hear about the anal irritation thing you have going on...that doesn"t sound like fun,,it was when I read   ' SEVERE  anal pain".... well severe anything in medical terms can be a little scary sounding, hence asking for some clarification.

WILL!

[GSDgirl]

Maybe the horns that grow out of your a$$ cause the pain.  copied from a post on social side.

[nygirl7]

Never ever heard of it before but I guess even here it's not the kind of thing people like talking about that much. Odd for so many poop threads and the oddities we have here ;)

[lapis]

I looked back at my papers from the tela study, and here is what is written as part of the consent:

The types of side effects seen during the earlier studies with telaprevir are very similar to the types of side effects seen in people who are taking PEG and RBV, without telaprevir.  Skin side effects (rashes and itching) were more common and more severe in people who took telaprevir with PEG and RBV.  Gastrointestinal side effects (nausea, vomiting, diarrhea, anal irritation) and anemia were more common in the people who took telaprevir with PEG and RBV.  

Since I personally experienced the anal irritation (lucky me!), I figured that's what he was talking about.  Hope this is helpful.  

Lapis

[GSDgirl]

Well???  The study?

[nygirl7]

Yeah but honestly nobody on here has ever heard of this side effect EVER before and I would think a lot of the people in here were amongst the first to be involved in the trials.  It doesn't sit right and I too would like to see this information in print to see how many study subjects this particular side that we never have heard of has happened to?

[Trish77]

Geez....now you're just being anal.  ;-P

[willbb]

I am finding it a real pain trying to find the study about the problem in the anal area......or something like that.

WILL

[willbb]

There may be more side effects with the addition of Telaprevir and Bocephovir: increased degree of anemia, skin rash and severe anal pain"
------------------------------------------------------------------------------------------------------------------
I would appreciate it if you would be good enough to post the study that states that either BOCE or TELA  results in severe anal pain....thx

WILL

[Dennisdrl1]

Anal pain apparently can occur independently of diarrhea.  Biopsy may be of value in genotype 1 to assess degree of inflammation (grade) and fibrosis or scarring (stage). It is possible to have perfectly normal liver enzymes but still have cirrhosis.  Biopsy can provide information regarding prognosis, response to therapy and rule out other causes of liver disease.  Progression to cirrhosis can occur during a much shorter period of time than 20-40 years.  It can be affected by alcohol, obesity and other factors.  I believe it is Telaprevir that is associated with the anal symptoms but at this point I am not certain as to its frequency.

[lapis]

I think he's referring to the rectal pain which is caused by burning diarrhea.  Yuk, I know, but that is one of the potential side effects with Tela.

[willbb]

It sounds like you are taking all the proper steps at this time....seeing a hepatologist,first and foremost as he/she will run the appropriate tests. The geno type at this juncture is most important as it will ascertain what further steps should be taken,if any at all at this time. The future looks bright for treatment and your daughter being young   is also a plus as it will most likely give her many options on when is the best time to treat,with a great chance of success.  Good luck.

To : Dennisdrl1...TX.sure can be a pain in the a..  however never really thought of it as a side effect.   :)

WILL

[nygirl7]

Very confused about anal pain what does that have to do with any treatment drug?

[spectda]

If your daughter didn't have hep c last year and has it now then it is highly unlikely that she will have sustained liver damage at least not from the hcv. It takes most people 20-40 years to sustain liver damage from hcv if they do not have other contributing issues such as long term alcohol abuse.

She probably doesn't need a biopsy even if she is genotype 1a or 1b.

Good luck with your daughter. I know this can be frightening, but the good news is that the odds of curing this disease are increasing rapidly with new drug development. Maybe she will be lucky and her body will fight the disease on her own if she has acute disease.

There are many people that join this forum for help supporting a family member that has hep c. I think you will find what you need here. A lot of intelligent, compassionate people who know a lot about hcv.

Take Care,
- Dave

[spectda]

"There may be more side effects with the addition of Telaprevir and Bocephovir: increased degree of anemia, skin rash and severe anal pain"

Yes the most common adverse effect of boceprevir is anemia, the most common adverse effect of telaprevir is rash. Which one of them has the severe anal pain side effect? I have not read that this was a problem with either of those drugs.

[Dennisdrl1]

There may be more side effects with the addition of Telaprevir and Bocephovir: increased degree of anemia, skin rash and severe anal pain.  However, the response rates are higher and would be worth a trial of the new meds.  Plus, more information will become available regarding treating the side effects

[Bill1954]

I’m not sure the statement:

“these new drug treatments are available as we hear they are easier to handle.”

is accurate. These new drugs will be used adjunctively with interferon/ribavirin and carry their own side effect and risk profile. Some patients may qualify for shorter treatment duration; this hasn’t been established yet.

Good luck-

Bill

[nerak124]

The doctor we saw is a gastroentrologist/hepatogolist. He said biopsy not necessary yet until we find out genotype but in the meantime a sonogram will give some news. Hopefully we can wait until these new drug treatments are available as we hear they are easier to handle. Thank you for your responses, very encouraging and helpful.