hep c non responder

[angelbabies55]

I am on week 43 and on the victrellis, pegasy and the rib.  First my doctor cut me back from 5 to 3 ribavirin about 4 months ago due to low white count.  I do nuepogen shots almost once a week since then.  Is that ok to stay at 3 this long?  My other question is I am having trouble getting my last refill of vitrellis due to insurance and I am so sick of all of this I am ready to throw in the towel and quite after one more week of the meds. (when they run out).  I know you pushed me from 36 weeks to the 48 week mark but again what is the stats on stopping earlier than 48? like week 44.  Also i have spider veins popping up all over my legs.  Is this the meds or the low red count or low platelets  I have been very lucky with my red count and been good until this last lab I did and it has dropped to 10.3 on hemo and all the other numbers have dropped as well.  I also have low platelets too that may be causing these veins. What do u think?

[timothy141]

Sounds like good news to me...it has been a hard lesson for me, learning how to keep the emotional side out it. If and when I allow life to seem to have taken the upper hand I fall apart like a cheap suit.
In reality my tx has become my job. And I have to act professional even when I want to blast someone.
I congratulate you on you focus and resolve.
Best wishes,
Tim  

[Dee1956]

Good luck, I hope it all works out.  I know about the tears, I think it stinks that we have to coordinate our care while feeling so sick.  I could barely speak when I was trying to get mine, tears are universal so people did help as much as they were able.
I am praying for you.
Dee

[dontworry_behappy1]

Swimmer is right about that one.  Ask for the tracking number so you know where the package is.  If you miss the package you can pick it up at the carriers warehouse.  Make sure you know their hours and remember UPS isn't open on weekends.

DWBH

[1swimmer]

Glad things are working out. You may actually find out how the shipment is being made and track it. I did this with ups. They tell at what time meds leave the dock.
Backup plan: the drug co., itself. Pharmacys receive meds everyday. So if the stuff is not on the truck call the drug co. immediately.
Keep trucking...
C

[angelbabies55]

Thank you so much  I spent the whole day on the phone with Eatna again along with work and it was my lab day too.  I was in tears but finally at 5:30 the medical director okayed it and then I had to call back to wait for it to get on the computer to ship and it is suppose to be overnighted and here today.  Keeping my fingers crossed and that number in case as my doc does not supply it and only one day left.  I feel so much better today and I feel like I am going to make it to week 48 now if it arrives  I am determined to complete this and will never do this treatment again.  6 months was enough but 48 weeks of my life stunk.

[Dee1956]

Good Job, I thought they must have a help line like Vertex.
I hope all is well

[1swimmer]

I found the victrellis phone # still in my contact list.
800-444-2080
If you listen to the prompt it eventually says patient assistance.
Hopefully everything gets straightened out and you won't need this number.
C

[Dee1956]

Do you have a help number at Victrellis?  I had to go to Vertex and then to Aetna customer service to get help.
Sorry, just trying to think of anything that would help you.

[Dee1956]

Hang in there sweetie it will all work out and you will get your med.
I know how frustrating it can be, I had the same experience with Aetna halfway through tx it was discovered they had only authorized me for 12 weeks.  It was awful trying to get my Pegintron.
The nurse had to call the insurance company to get the authorization, then the scrip has to be sent to them for approval, then it goes to Special Pharmacy to be filled and mailed.

It is the most convoluted system I have seen.  At one point, on a Friday I was waiting for 7 phone calls to get my meds by Monday.  I was so sick I could barely speak through the tears.What a nightmare.  it will work out!
They can over night the meds to you
All my best
Dee

Hang in there.

[1swimmer]

FRustration with the logistics of triple= huge pain. Keep breathing. And then, do make a call directly to the drug company and beg. Perhaps they can contact your doctor and make this happen. Or perhaps they will deliver some meds now. There are hotlines; "help" hotlines and you can use some help.

If it was my life on the line, I would go down fighting. You are probably not feeling well, but I encourage you to battle.

Good luck,
C

[garrygee]

Hang in there.  I'm in week 38 and right behind you.  It does seem like it has gotten harder to get through this past month.  I just take the meds a day at a time now.  I don't ever want to do this again.  I'll just do whatever it takes until it's over.  I'm rooting for you.  Garry

[BoceprevirGal]

  I am so so sorry about all the stress you are going thru right now~
I did a 28 wk Tx with the Victrelis, and did clear the virus.
   I am wondering at what week you did your viral load  become Undetectable?
As others have said, you cant miss a dose of Victrelis, becuz it may make you resistant to Victrelis. The good news is that you have taken it for all these weeks, that is amazing, you are extremely strong and brave, to stay on these meds for 44 wks!
   I will be praying for you, and visualizing everything working out and
falling into place for you, so stay strong  ~~  Katy

[angelbabies55]

I have talked to the insurance company and still waiting on a approval and the girl is sending another email to the nurse again to expedite it more at the insurance company.  I asked for the nurse but they wont talk to you.  She said they should have an answer today on my victrellis.  I talked to the doctors office too and they do not have any drugs on hand but are calling their Merck Rep.  I have 3 bottles left and getting stressed and of course want to cry to come this far to have some bureaucratic red tape stop me from making my 48 weeks.  I am sure that it will work out and I am not going to stress any more or make any more calls.  If it is meant to be it will work out.  I just hate the fact I wasted a year of my life not to finish.

[pooh55811]

"I told the nurse I was taking this along with protein shakes but I should of checked with the pharmacist."
-------------------------------------
Actually, it is your Hepatologist with whom you would want to discuss all medications and supplements. He/she would be the one to know what your iron studies show (if he/she did those tests).


"I did not want to get anemic so I have been taking one a day and sometimes 2 to boost my iron and other vitamins."
-------------------------------------
The type of anemia one gets while taking Hepatitis Treatment is Hemolytic Anemia (NOT Iron Deficiency Anemia), so taking iron to prevent Hemolytic Anemia during Tx would not work anyway. The Hemolytic Anemia is caused by the drugs we are taking, not from iron deficiency.

Hemolytic anemia is a condition in which red blood cells are destroyed and removed from the bloodstream before their normal lifespan is over. ..... Hemolytic anemia is caused by high rates of red blood cell destruction. Many diseases, conditions, and factors can cause the body to destroy its red blood cells.

http://www.nhlbi.nih.gov/health/health-topics/topics/ha/

http://www.nhlbi.nih.gov/health/health-topics/topics/ha/causes.html

http://www.nhlbi.nih.gov/health/health-topics/topics/ha/types.html


"I read that iron can hurt your liver and spleen without therapy and it can block my treatment as well."
----------------------------------------
Not everyone with Hepatitis C has iron or iron overload problems. Not everyone with Hepatitis C who takes iron will have problems. Just discuss it with your doctor. If it was me, I would stop taking iron supplements and discuss it with my Hepatologist.


"Does this mean I went through this treatment for nothing now and may have even done some damage as well?"
-------------------------------------------
No. You may not even have an iron problem or an iron overload problem. Most people do not. Even if you did, there are several people on the forum who do have iron overload problems and they are successfully treating.

Again, if I was you, I would stop taking the iron and discuss the situation with my Hepatologist.

I would also continue treatment for the full 48 weeks as per protocol. You have been doing well. You have been UND for a long time. Your treatment is going well. You have a very good chance of SVR.

Best of Luck!

[dontworry_behappy1]

The questions about the effects of taking iron during treatment might be best addressed by asking your doctor.  Asking as a new question on the forum could get get you more responses.

DWBH

[angelbabies55]

After your posting about the Hema-plex iron supplement I was taking I did do some research and you are correct.  I told the nurse I was taking this along with protein shakes but I should of checked with the pharmacist.  I did not want to get anemic so I have been taking one a day and sometimes 2 to boost my iron and other vitamins.  I read that iron can hurt your liver and spleen without therapy and it can block my treatment as well  Does this mean I went through this treatment for nothing now and may have even done some damage as well?  I also take ester-c and a vitamin d daily too. I am on week 44 and want to cry.  What should I do???

[angelbabies55]

I have not checked with the doctor yet and have the first specialty pharmacy that I started with doing all my leg work(they where terrific) and just spoke to Eatna again along with the nice pharmacy.  As soon as they get an okay they will override and get it to me in one day unless Aetna can get it to me first. We are just waiting on the authorization from Aetna nurse which takes 72 hours and of course it is marked urgent so I hope to hear from them today as they filled out the forms a day or two ago to get the wheels turning..  I just got off the phone with everyone again to make sure that I would not have the same problem with my pegasys.  I have plenty of Rib left and pegasys is set to go.  So if all goes well Eatna will okay it today and if not I will ask the doctor about the samples.  As far as the iron it is fine and I know about all the supplements I can and cannot take.  It is 85% elemental iron and it is safe and again my iron and all related has been great throughout my treatment where most people have problems and I just started to drop this past month and hope it stays up until end of treatment or will have to take procrit.  It was a suggestion for others as it worked for me great for me!!!!  Thanks again

[timothy141]

I am reluctant to respond, I have not had to do a triple therapy, for that I feel very fortunate. I 'm a GT3, tx is only peginterferon-alf2a and ribavirin. And yet I too have had times I wanted to through in the towel. It has kicked my a$$. But when pooh, suggested who I would I hold responsible if I quit tx AMA, It knocked my socks off, and that thought has made me refuse any idea of any earlier termination of tx. I am know at the end of week 33 of 48.
I never wish to to go through this again!
There are ways to deal with the financial issues you face, but unless you take the steps they wont happen. You have been given good advice, this is a fight for our life. Every time I have turned around it has been something stupid that creates much heart ache, but the thought of surrender at the hands of another is unacceptable, you are so close. Don't just walk away.
      

[can-do-man]

It is not ok to skip a day or two, not even a good ideal to miss a single dose.

  Your disease may become resistant to Victrelis if you do not take it in combination with other medicines your doctor has prescribed.

Victrelis is NOT like Riba or interferon where you can reduce or miss doses.

[dontworry_behappy1]

and angelbabies55....it's not ok to miss does of your treatment drugs.  Missing does CAN result in a failed treatment.  I would do everything I can to get all the treatment drugs your taking in advance.  Also sign for them when they come.   So you will know who to blame if your missing doses.  

DWBH

[dontworry_behappy1]

See the above answer to your question.  Call your doctor and ask if they have your treatment drugs on hand.

DWBH

[dontworry_behappy1]

You need to check with your doctor before taking any supplements like iron.
It's my understanding you shouldn't take it. Centrum Silver Adult 50+ doesn't have iron supplements.  You might ask your doctor about it.  Also, If you are so close to not getting your meds you need to call the doctors office and tell them.  They have treatment meds on the shelves in their office for emergencies like not getting your treatment meds.  It's come up on the forum more than a few times.  My doctors office even told me about it and said the meds come from the Drug reps.. They have it!!!

DWBH

[angelbabies55]

Thanks everyone for helping me through this because of the bad nurse I had through this (which btw got fired 2 weeks ago and the new nurse is terrific and now I am almost through  LOL!).  If it was not for you I would not have come this far and I want to thank you again so very much for all the help.  Again I hope the cut back on the rib did not hurt but I was told by nurse it was because of my low white and neutophils and nothing to do with the red.  I have been very lucky with my red throughout the whole treatment.  Maybe he also cut it back due to low platelets.  I will however suggest to anyone going through treatment that I take take a great vitamin for my iron etc  called Hemo-plex. The health food or vitamin shop should carry it but I think it has helped me a lot taking it daily or 2 times daily along with my protein shakes and other vitamins and eating right and LOTS OF WATER.  My question is:  If I cannot get my victrellis on time would you continue to take the Pegasus and rib without?  Or also if I do not get it on time is it okay to skip a day or two of victrellis if it gets shipped late?

[dontworry_behappy1]

I would show The "treatment road map" to you doctor and insurance company.  Sounds like a miss understanding.

DWBH