which doctor, ifd or hepatologist??

[Duttl48]

Hi, I'm so thankful to have found this sight, been a good resource. Discovered hcv after being screened for STD, wasn't concerned have been practicing safe sex for a couple of decades. My gyno referred me to an ifd, have very mixed feelings about tx.

After the ifd  disregarded my request for a MRI or biopsie of my liver, sought out a hepatologist. Ifd  just wanted me to start drug therapy. Hepatologist agrees with triple drug therapy, but doesn't suggest a 24 week tx. If has hinted at shortening therapy, cause I responded fast. Here is the important info.

Geno1a
Vl wk 1 8,250,000
Vl wk 4 1,520
Vl wk 7 detectable, less than 25 iu, but trace and not quantifiable
Vl wk 12 undectabl
Age 54, female, good health
Stage 1 per MRI, used to drink frequently and not drinking now

Do I need both doctors?

Thank you in advance for your input,

[orphanedhawk]

Liver enzymes don't always show whether or not there is liver damage which is why your hepatologist wanted a biopsy.

I'd fire the IFD.
They don't have the training that a hepatologist does about liver disease.
The important thing with hep C is preventing liver damage.
The only way to tell the extent of damage is with a biopsy or fibroscan.

Dose reduction due to low  anc ( absolute neutrophil count)  is only one way to deal with low anc. The other is with a rescue drug known as nutrogen. It is often recommended when anc is .5 or below.

Good luck.

[Duttl48]

Thanks again everyone for our input. Will post soon! Have a good day!

[hrsepwrguy]

"Should the injections be administered consistently at the same time once weekly?"

Take your prescribed dose of PEGASYS 1 time each week, on the same day of each week and at approximately the same time.

http://www.pegasys.com/patient/index.html

•Take your prescribed dose of Pegintron every week, on the same day of each week and at the same time.

http://www.drugs.com/pro/pegintron.html

"Any benefit to juicing for supporting wbc?"

Since the neutropenia is medication induced, I don't think juicing is going to help to combat it on the scale needed, as Idylic has suggested there are rescue meds (neupogen) to combat neutropenia.

I would stick with the hepa doc as he seems to be more aware of how to treat hep c with the new meds JMO

Have a great day

[Duttl48]

Appreciate all input, very helpful. A few comments for clarity.

Ifd = infectious disease doctor, only treating the virus. Did not think there was a need for an MRI or biopsy of liver. My liver enzymes were not elevated much at time of discovering virus (know levels fluctuate, care for my dad and monitor his labs).

Hepatologist - sought on my own to check liver for fibrous matter, don't know when I contracted the virus. Fibrous matter is 1 in the report.

As a side note, injections had to be reduced after week 12 because of low wbc
Neutrophils and other changes with platelets and rbc.

A few more questions.

Know it is important to take victrelis and riba on schedule. Told could take injection anytime of day and could could go out as far as the next morning after normally schedule (Tuesday could take Wednesday). Should the injections be administered consistently at the same time once weekly?

Any benefit to juicing for supporting wbc?

Thanks all!

[Idyllic]

"...had the 8 week test done after being on meds a total of 50 days,..
________________
7 weeks and 1 day is rather premature to be considered an 8 week viral load. Unfortunately as the others suggest 48 weeks (to me) would be the appropriate treatment duration for Response Guided Therapy.


I encourage you to stick with your Hepatologist to oversee your treatment and perhaps be sure your Family doc continues to receive copies of your labs. Err...actually timely labs might be one area you may need to enlist the support of your family doc if for some reason your Hepa is unable to coordinate.

Perhaps you could obtain lab slips in advance and go to a lab near you. Whatever you work out is fine but the idea is to have your labs on time for your 24 week labs since HCV RNA must be UND to proceed with treatment.

It is what  hrsepwrguy suggests in his post:
For week 24 labs
"you should have the test the day of your 25th shot prior to the shot (if you do it at night) or the day before (if you do it in the mornings)."

http://www.medhelp.org/user_photos/show/284656?personal_page_id=1282072

Best of luck and please keep us informed ♫

[HectorSF]

"Do I need both doctors?"
No. The Independent Family Doctor's work is done. Their job is to direct you to the correct specialist. Specialists for treating hepatitis C are gastroenterologists and hepatologists who are knowledgeable and experienced in treating hepatitis C.

"Stage 1 per MRI"
A MRI can NOT stage liver disease. A biopsy should be used.
If the hepatologist ordered the MRI, you have misunderstood why the MRI was performed.

Good luck with treatment.
Hector

[pooh55811]

I agree with the above. If it was me I would do the full 48 weeks of treatment. Why take any chances on risking relapse.

I also did 48 weeks because I was not UND at week 4. I am now 13 weeks and 5 days post end of treatment and I was UND at 12 weeks post end of treatment. That gives me a 99.7% chance at SVR/cure (excellent odds).

I never missed a dose, never was late with a dose, and did not reduce any medication dosages.

Wishing you SVR and the best for the future.

[Duttl48]

Appreciate your input, agree it is better to do all 48 weeks. I'll check out the sites you shared.

Thanks again and have a good evening!

[hrsepwrguy]

Sorry we were typing at the same time, if it were me, I would do the 48 wks, actually I did 48 wks w/incivek because I wasn't UND at wk 4, I was DET <43 at wks 4, 5 and 6

[hrsepwrguy]

When it comes to your 8 wk test it really is splitting hairs, you should have tested the day of your 9th shot before the shot (if you do it at night) or the day before (if you do it in the mornings), as per the test you have posted as your 8 wk VL you would be doing 48 wks as per victrelis protocol but it is not the full 8 wks (50 days=7wks 1 day) (8 wks=56 days)

That is a tough call because you were DET but not quantifiable at 7 wks 1 day, could you have been UND at the full 8 wks, highly possible but it is not for sure, what has your doc said as far as treatment duration.

[Duttl48]

The hepatologist recommends full 48 weeks of treatment, it is the ifd  who hinted at truncating treatment.

Overall responding well to meds, learned about sun exposure the hard way. My neutrophils absolute was .5 at week 12.

Thanks,

[Idyllic]

Based on what your post I am gathering there is no way you could be taking Incivek (Telaprevir) since your VL was > 1000 at week 4

________________
I understand the VL result on week 8 for Boceprevir (Victrelis) is a factor that determines treatment duration. Are you assuming since you had VL < 25 at week 7 and were UND at week 12 that you may have have been UND at week 8?

I am trying to guess what your original treatment duration would be based on being Geno 1, treatment-naive and UND at week 8. This is a total wild guess based on what little info there is but was your Hepatologist advising you that you would not have to treat the whole 28 weeks since you were RNA Negative (UND) at week 8?

http://www.medhelp.org/user_photos/show/311765?personal_page_id=1282072

__________
As I said this is total speculation since you mentioned a perceived rapid response to Triple therapy. If (IF) this is the case I am uncertain why your doctor would suggest truncating your treatment. Are you responding well to the side effects or is there some other complication that would prevent you from adhering to Response Guided Therapy for Triple?

I hope you have the chance to post more info. Not sure to suggest which doctor to stick with since it always helps to have a second opinion. Plus I am confused about what your Hepatologist seems to have told you about treatment duration.

********************
There are rescue meds to address Neutrophils or Interferon dose reduction. What is your ANC (Absolute Neutrophil count)?

[Duttl48]

Thanks for all the detail. On victrelis, had the 8 week test done after being on meds a total of 50 days, maybe splitting hairs...doesn't seem like a full 8 weeks.  

Have had some issues with ABC and neutrophils being low, so been a frequent flyer at the lab. Ifd  hasn't sent me the reports, hope to get next week.

Again thanks for all of the detail!

[hrsepwrguy]

2.1 VICTRELIS Combination Therapy: Patients Without Cirrhosis Who Are Previously Untreated or Who Are Previous Partial Responders or Relapsers to Interferon and Ribavirin Therapy  

• Initiate therapy with peginterferon alfa and ribavirin for 4 weeks (Treatment Weeks 1-4).  
• Add VICTRELIS 800 mg (four 200-mg capsules) orally three times daily (every 7 to 9 hours) to peginterferon alfa and ribavirin regimen after 4 weeks of treatment. Based on the patient's HCV-RNA levels at Treatment Week (TW) 8, TW12 and TW24, use the following Response-Guided Therapy (RGT) guidelines to determine duration of treatment (see Table 1)

Table 1: Duration of Therapy Using Response-Guided Therapy (RGT) Guidelines in Patients Without Cirrhosis Who Are Previously Untreated

HCV RNA At Treatment Week 8-Not Detected
RECOMMENDATION-Complete three-medicine regimen at TW28

HCV RNA At Treatment Week 8-Detected
RECOMMENDATION- 1. Continue all three medicines and finish through TW36; and then
2. Administer peginterferon alfa and ribavirin and finish through TW48

TREATMENT FUTILITY If the patient has HCV-RNA results greater than or equal to 100 IU/mL at TW12, then discontinue three-medicine regimen. If the patient has confirmed, detectable HCV-RNA at TW24, then discontinue three-medicine regimen

http://www.victrelis.com/boceprevir/victrelis/consumer/prescribing-information.jsp

[hrsepwrguy]

Actually if you are on incivek your doc should have stopped all treatment at 4 weeks as per incivek protocol, hopefully you are on victrelis

2.7.1 Duration of Treatment in Treatment-Naive Subjects
In subjects who have had no previous treatment for HCV (treatment-naive), treatment with telaprevir must be initiated in combination with Peg-IFN and RBV and administered for 12 weeks.
• Subjects with undetectable HCV RNA at Weeks 4 and 12 receive an additional 12 weeks of Peg-IFN and RBV alone for a total treatment duration of 24 weeks
• Subjects with detectable HCV RNA at either Weeks 4 or 12 receive an additional 36 weeks of Peg-IFN and RBV alone for a total treatment duration of 48 weeks
HCV-RNA levels should be monitored at Weeks 4 and 12 to determine treatment duration.
Treatment with telaprevir should be discontinued in subjects who do not have an adequate viral response during treatment.

http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/AntiviralDrugsAdvisoryCommittee/UCM252562.pdf

Treatment Futility Rules: All Patients
HCV-RNA  Week 4 or Week 12: Greater than 1000 IU/mL Discontinue INCIVEK and peginterferon alfa and ribavirin (INCIVEK treatment complete at 12 weeks)
Week 24: Detectable Discontinue peginterferon alfa and ribavirin

http://pi.vrtx.com/files/uspi_telaprevir.pdf

[hrsepwrguy]

Are you on incivek or victrelis ?

If you are on incivek, you should be doing 48 wks of treatment because you were not undetectable at wk 4.

If you are on victrelis you should have had a viral load done at 8 weeks not 7 to determine either 28 or 48 wk treatment.