Possible Inspiration for Others

[johninar]

When I first started my tx 5 weeks ago my VL was over 3,120,000. After, week 1 it was 460. After week 4 UND.

I can't give much advice to others as my tx has went so well at least up to this point. The only symptoms I really had was a rash that I was able to take care of. SEVERE fatigue, and panic attacks times ten (REALLY BAD probably related to my Huntington's Disease)........ AND 1 BAD DOCTOR!!! I changed doctors and it was like a nightmare to a dream come true. Communication is very key and instrumental through this process as a whole and if you feel your doctor is misleading, scatter brained, and minimal to ZERO communication with your doctor or the staff....GET RID OF THEM! There are doctors out there with staffs or in my case a nurse practitioner that are really great!!!

Hope this helps someone!

[BoceprevirGal]

Okay, that sounds good. The injections would be a "rescue med" used specifically for hemolytic anemia, occuring from the meds we take, with Triple Tx. The medicine is called Procrit, and I am taking it also. I take 40,000 units, once a week.
   It goes under the skin, just like the Interferon shot, but it is a little harder to get in, I notice there is more resistance, as the plunger pushes it in, and there will be burning. Dont worry that it is being put in wrong if you feel lthe burning, just keep pushing it in, and then the burning will stop. It's not that bad, but the Interferon shot is painless, so I just thought I'd warn you.
  The Procrit can take a few weeks to start raising up the HGB, so try to take it slow and easy~

[frijole]

It sounds like you made a good move, changing doctors, and your timing was perfect.  I am amazed and very happy because your doctor apparently is prescribing  epogen (procrit) for your anemia.  I hope he has also given you orders for weekly CBC's.  This is very important.

Be careful with hgb of 8.  That is awfully low and it takes awhile for the procrit to help -- in my case about 4 weeks.  Many of the doctors now are suggesting riba reductions down to 600mg per day and then the ribavirn is increased as your hgb increases.  I find the riba reduction to be a "quick fix."  I absolutely hate to reduce treatment drugs but  even though current data shows that it does not affect SVR,  but I did it for a few weeks because I felt so bad --- and my hgb was never as low as yours.

bean

[johninar]

Hi and thank you all so very much for your feedback as it is greatly appreciated!

When they seen my level come back so low they called me back and I could tell the concern level was high just by the comments. She stated she wanted to to see me ASAP so I went in early the next morning and she asked me to bring my wife for training on injections I will be taking at home. I was to tired to even ask what the injection was and my wife was to nervous she forgot to ask as well.

My fever and shaking only lasted for about a week and has since been somewhat normal for the most part.... some fever and some cold chills occasionally.

I will know more when the injections come in the mail and report back to you all and get your feedback.

Thanks Again!!!!!!!!!!

[BoceprevirGal]

Hi John. When was your last blood test, which told you that you were 8. on your HGB? The reason I am asking, is if it was a week ago, you could be much lower now.
   Shaking isn't good, and how does your chest feel? Any heart palpitations, or pain?  Many people have blood transfusions when they go under 8., and find great relief, quite quickly!
   I know quite a few people on here, and in my home HCV group, that doo need blood transfusions, to deal with their hemolytic anemia issue.  
   A couple people I know have just gotten out of bed, and gone right into the E.R., to get the ball rolling. Once they were at the E.R., their blood was drawn, and the labs came back as quickly as 3 hours, instead of the 3 or more day wait that occurs, with a non-emergency situation.
  The hospital can make sure your shaking isn't something serious, and if your HGB is low, then they can determine if you need a blood transfusion~
Dont be scared to go to the E.R., for HGB this low~

[willbb]

I must have missed something Hawk.  :0)  That is not unusual for me this time of night ..
Will

[orphanedhawk]

Every time people start going on about viral loads, I want to pull my hair out.
Viral loads are good for indicating how well we respond to treatment.
Its great that you did so well. Congrats.

But viral load is not an indicator of liver damage, which is what's really important, right ?
The  reason I react this way is when diagnosed with decompensated cirrhosis my viral load was 750,000. My liver was failing, I had ascites, and a low viral load.

So, to everyone who has a high viral load, it is not relevant !
What is important is how healthy your liver is.

[willbb]

BTW I spoke to soon I've been in bed for over a week and with high temps and uncontrollable shaking etc,...

Come to find out I am now anemic with my blood count at 8......
-------------------------------------

Hi john..
Just to tag on to the excellent advice pooh gave you above.  How high is your fever and for how long have you had it? I Is your doctor aware of this?
Low grade intermittent fever is fairly common while treating if you have a constant high fever with "shaking" as you mention I would talk to the doctor about this .

Also what are they doing as Pooh asked about your HGB ? 8 Is very low and wold be treated by either a dose reduction of Riba  or possibly the introduction of the rescue drug procrit..
These two remedies should be considered when HGB gets to 10.

Hopefully you are receiving proper care  and frequent labs to monitor these values..
Please let us know how you are doing .

Will

[Idyllic]

Hgb that low is not a good thing. I'm in the same boat and it feels like way more than "just another hurdle."

Has your doctor advised you how to proceed? My Hgb is in the 8's too and even though I reduced my Riba (per Drs orders) it must have been a tad too late since I can feel it and it is very scary.

Pooh gives some great insight about at least finding out about Procrit and your insurance company. It helps to know you are covered in the event you need it right away.

Please do not let this go. Be sure to call your doctor tomorrow.

[MeWithC]

I had similar luck....I started aprox 3,000,000 & after 4 weeks registered at 150......Next Friday...we see if it went UD........

[pooh55811]

I am sorry to hear you are not feeling well and have been in bed with a fever and shaking for so long. I hope that clears up soon.

I am not the expert on the forum, but 8 is pretty low for a Hgb. You are in week 7 I believe (maybe week 8). Has the doctor done anything about your low Hemoglobin? I know they can reduce the Riba some and they can also give a rescue drug like Procrit. They should be doing something before it gets any lower. Procrit takes a while to work. Plus the insurance co. has to approve it, so they should be acting now.

Here is a thread that has a lot of information from some of the experts concerning anemia and its treatment (when taking Hep C meds).

http://www.medhelp.org/posts/Hepatitis-C/Treatment-for-Anemia-Dose-reduction-or-Procrit/show/1731118


And here is an article with some guidelines for managing anemia in Hep C treatment:

http://www.clinicaloptions.com/inPractice/Hepatology/Hepatology/ch8_Mgmt_of_Hep_C_Infection/Supporting%20Assets.aspx


Table 17. Summary of Adverse Effects of Peginterferon/Ribavirin

Hematologic

Commonly causes anemia due to hemolysis and bone marrow suppression; less commonly causes thrombocytopenia, neutropenia; rarely causes aplastic anemia

For anemia management, ribavirin dose reductions and erythropoietin use can be considered; ensure replete of iron, B12 and folate. Blood transfusion may be necessary in extreme cases. Use of colony-stimulating factors not routinely recommended


Table 19. Selected Adverse Effects of Telaprevir

Anemia

Ribavirin dose reduction, erythropoietin (although not allowed per protocol in clinical trials), blood transfusion


Keep us posted. Hope things improve.

[johninar]

7 million that's a lot. I will be praying for all of you to beat this horrible disease.

BTW I spoke to soon I've been in bed for over a week and with high temps and uncontrollable shaking etc,...

Come to find out I am now anemic with my blood count at 8...... Is this a bad thing or just another hurdle to cross along the way?

[2mlbb]

My viral load started at 7.7 million as well. At 4 weeks...UND...Best wishes to you

[helphubby82]

Great news congrats this gives me hope hubby is going on 4 weeks blood test soon praying and keeping my fingers crossed reading stories like yours gives us hope thanks for sharing  onward to svr!!!

[pooh55811]

That is great news. Congratulations. I know you were very concerned and I also know you have other medical issues complicating your treatment, so this is just great news and very encouraging news.

[stormy456]

That's great news!  You're almost halfway through the roughest part.  Thanks for the post.

[Ironpony]

Und since week 4 or before:) on week 11 with inc peg and riba.
1 wk left of Incivek!!!!!!!!!!!!
(I was und at 8 wks too...) I go for my 12 week VL next Friday, fingers crossed !!

[Eki1]

Thanks for posting this, BTW.  I had a VL of 7.7 million.  After 1 week, it was 93.  I have my four week test on Thursday, but won't get the results until the following wednesday.  I hope I follow your lead into UND.