Rescue treatments

[patra_]

I got my 7 week test results yesterday. Less than 15 UNDETECTABLE  Less than 1.18 UNDETECTABLE!!!!  : -)))

I am very pleased with that BUT understand that this is just one of many steps.  Dr. & I discussed possibilities and future tx possibilities IF I have a relapse, either while on meds or after I complete (24 wks Sol/ Riba - hepc Gt3).

My problem is that my Hemoglobin has also dropped again from 9.6 down to 8.8 now.  We discussed the three methods of rescue:
lowering dose of Riba; blood transfusion, or Procrit.  I am not in favor of any of them.  Dr believes I need one and he says while he doesn't want any of them either, he believes Procrit would be the best choice for me.  

I am not yet low enough to qualify for transfusion, and he does not want to lower the Riba because, right now, Gt3 is the hardest to cure AND is limited to only the Sol/Riba.  He believes if I were, like 2s and 1s on a 12 week protocol, lowering the dose would not be a real problem for lowering my chances of SVR OR if I were in the triple tx, there would be two other arms to the treatment, which could carry the chances forward, which is why he believes the Procrit would be a good choice.  (I love that he is listening to me and discussing this)

Now, we have decided, since the only side I am having is extreme fatigue, to wait 2 weeks And retest to see if Hemo has come up - unless I have a problem.

My questions are: what are all the sides from Procrit?  What have those of you who have used Procrit think?  Any Advice anyone can offer will be appreciated.

Fighting the dragon with everything I have - but don't want to drop dead in the floor from anemia.  : -). Pat

[patra_]

Up-date!!  We waited the 2 wks and last wk on Tues I had another blood draw.  I had errands, etc every day for the last 2 weeks and was able to do them.   : -)

Long story short, did stuff every day, no full days in bed to rest after activity one day.so truly believed my Hmg must have come up.

It did!  Only by .2 from 8.8 to 9.0 --- but it was enough to make a difference in my energy, back to what it was the first few weeks on meds.

Dr. Is happy too.  He checked to make sure no change in sides, and said we will continue as is & do another Lab in 2 more weeks.  This next on will include the LFT and VL as well as CBC.

We definitely have decided on the Procrit IF my Hmg drops below the 8.8, but I am praying it wont.  I remember several heppers on Sol/Riba said their Hmg leveled out or came up a lottle around 8 - 10 weeks.  Looks like it did for me, to.

Wanted to share w/all who gave mw such good advice.

On to SVr for all!!!

[patra_]

Thanks for the input.  Hearing what others experienced w/Procrit and what they would do again really helps me.  

I:  Having a little energy back would be nice.  You don't realize all the little things you do, around the house,mrunning errands, etc, until one short something wipes you out for the rest of the day - and the next.  UND, I'm still smiling!  : -)

S:  I like how you think.

As I said avove, I called Dr's Ofc today - don't expect to hear back until Mon or Tues.  I'll let everyone know when I know something.  Pat

[susan400]

Yep, I agree, the Procrit.  So far with my, my hemo's never dropped.  My neut's have tanked.  Enough so that twice, I've required going in to office to get an IM Neupogen shot.  In the past, I was given the Neupogen to give to myself sub-Q at home, but I think maybe this office wants to be more in control of it.  If I needed the Procrit, I'd do it though, rather than reduce dose.  I was offered reducing dose on the Interferon and I turned it done.  The doctor thought that was the better option for me as well. Since I'm on the Sovaldi plus SOC x 12 wks, dose reduction is not a good choice for me.  I can't risk my SVR and risk having a breakthrough relapse.  Susan400

[Idyllic]

Ahhhh.. age matter for Procrit? I have no idea. I'll go with Can-do. Plus I took Procrit myself for about 36 weeks. I started out on 40 and ended with 60. Kept on going even after the last ten days of treatment. I had left over drugs and figured what the hey.

Anyway back to you. My Hgb was down to 8.1 when I started Procrit in week 12 or so and I have no other health problems other than the HCV so I pretty much learned about Procrit right here on the forum. I had no intention of reducing my Riba and my doc was on board with the rescue meds. Procrit enabled me to do things around the house, walk my dogs and mow the lawn.

It helps to have some of your energy back. The last thing you want is to be sitting around feeling fatigued and crappy on these meds.

Congrats on being UND!

[patra_]

Thanks for the input.

Based on all of the above responses and discussion w/my husband, called Dr's Ofc.  I'll let ou all know what he says and what happens next.


thank you all so much.  Pat

[AWorriedMom]

I had no sides from Procrit. I believe that is your best option.

[patra_]

Thanks for the input and good words!  
s: Comgrats on the 1wk post EOT Labs today!!!  Will be praying for UND.

L:  I am F-3, A-0 - A-1, so really want to get this dragon before it goes on to cirrhotic.  I will call Dr.s Ofc today and ask about B-12 and C.  Also I work at keeping a good attitude.  I try to face each new thing as a creative challenge - 'how can I best handle this?'. I think it gives me perspective, and certainly keeps down the worry and anxiety.

Again, thanks, ALL.  Pat

Praying for Sustained SVR for ALL of us.  Pat

[Livelife777]

Wow Pat.   Big drop unfortunately.   Think the procrit is the way to go at this point.  Have taken this drug before, and the sides weren't to bad other then a bit of a pinch on insertion.
Am wondering the status of your liver as far as cirrhosis.  If not perhaps you can aid the anemia with some iron rich foods.  The vitamin b12 is a good one if your doc is in agreement.  Another thought being vitamin C does help with absorption of any form of iron.  Cirrhotics (if you are) have to watch additional iron so again check with your Hepa.
An 8.8 is on the low side but would think cutting the Riba could affect your outcome since this anemia hit you kinda early in the game.  Personally when I took the procrit it was anemia from chemo, so we are looking at 2 opposing battles.
Am enthused that your doc seems to be right on in regards to your Tx.  Hopefully you will see a bit of a rise in the next 2 weeks, without any rescue drugs at this point.  In my case my Hmg did slightly increase on its own around week 8.
Believe you have a great attitude and feel it will benefit you in the long haul.
Keep the faith, take it one step at a time, and visualize success as you continue on your journey.
Be well
~Kim

[sue4hula]

Hi there.  When I treated in 2012 with The Victrelis triple treatment, I had to use Procrit and reduce my Ribavirin.  I didn't have any side effects that I know of from the Procrit and it helped get my hemoglobin back up a bit.  

This treatment, my hemoglobin didn't drop below 10 until the last 2 weeks of treatment.  If I had needed too, I would of done the Procrit again in a heartbeat.  Anything but lower the Ribavirin dose for me.  

  One week post treatment/EOT labs tomorrow.  Hoping the Virus is still undetected...

Take care!

[patra_]

V:  Forgot to answer your question.  I am very fatigued, but other than that, I feel fine. I am careful to space out my activities, and am trying to limit as many as I can to early afternoon.  Mornings are not a good time for me to be active.  No exercise, as yet, other than walking around the grocery store, when I feel like it.  Thanks for asking.

can-do:  Thanks for the further info.  

flyinlynn and nan:  Thanks for the input.  I want to hear the bad as well as the good.  More info to use to make a decision.

I am amazed at all the information available here.  Pat.

[nan535]

My husband is one of those who had trouble with procrit  BUT he also has unique circumstances being post transplant with portal hypertension and hepatic encephalopathy. The procrit shots increased his bouts of HE.

It definitely increased his hgb while he was on it (10 weeks).  So despite my husband's issues, I would recommend you start treatment with procrit rather than reduce the ribavirin.  If you experience some issues, you can always stop it.

Congratulations on being UND!  Now continue the fight and finally get rid of this virus.  Wishing you a successful outcome!

Nan

[flyinlynn]

Hi congrats on the undetectable!

I was on procrit the last time I treated with the old treatments. I think it was in 2001. The only things I rember about the procrit was the shot hurt just a bit and I felt 100% better after being on it for a while. I had taken family medical leave after my counts went to heck. After I had the treatment I was able to return to my job feeling fine an one can on interferon and ribavirin anyway.

Good luck beat the dragon
Lynn

[can-do-man]

Age as not seemed to matter. Keep in mind your genotype has now became the hardest to cure. I would hate to reduce with that type. Just my opinion and past experience. I agree your doctor seems to be on top of things.

Verdugo was you type 3? Huge difference.

[patra_]

All good points!  but when the Dr explained why he didn't want to reduce the Riba if we did not have to, coupled with my concern about those markers which can make it hard to reach SVR and weight was the on,y one I could contril - and I am still well over the 165 - although losing steadily but the. same way I put it on, slowly- I agreed that I don't want to reduce it.  That Gt3 thing is there.

Thanks!! And I still can't get the. smile off y face from seeing the UND! : -) P

[patra_]

Thanks for the input.  Yes, I am blessed that he will listen and discuss.  Not all Drs take time to do that.  

can-do and Idy:  Does age seem to matter in tKing Procrit?

[Verdugo]

You are UND!   Celebration!!!

At 8.8, how do you feel?

Regarding your hemo, I had the same discussion with my doctor at about the same time in my tx and was presented the same options.  I did research on Procrit and felt the side effects were not worth the risk.  I looked for evidence of riba dosage reduction cause relapse or interfered with SVR and never found it.  In fact, I found the opposite was true (at least anecdotely via forums) -- many with dose reductions did SVR, so make sure your doctor can point to studies or credible information that supports his protocol. I think your doctor is probably basing his information on old med combos.

One thing seems clear, you do need to decide soon as you are nearing 8 which is a critical marker.

I can relate to being afraid of failing tx but like you said you want to kill this virus AND maintain your health (and also not die).  JMHO.

Good luck with whatever you decide.
V.

[Idyllic]

8.8 is pretty low...........
Anyway, I could not say what has been said any better I just wanted to agree Procrit seems like the way to go if possible. Granted you will have to have CBCs more often which means more labs but other than that, that is the only inconvenience I can think of. At least when I treated anyway.

I am so relieved on your behalf  that your doc is listening to you and respects what you have to say. It does sound like you are on the ball. It takes a while for Procrit to kick in so you don't want to wait until your Hgb gets much lower.

Best of luck :)

[patra_]

That was supposed to be a smiley face after the first thanks!  Never could type. lol

[patra_]

Thanks! : -:   and

Thanks!!  I have seen some posts which kind of scared me about the Procrit.  It is good to hear that not everyone had the sides.  P

[can-do-man]

P S, congrats on being UND.

[can-do-man]

Being a type 3 I would not lower your Riba but go with the Procrit. I had to do two shots a week for most of my two treatments and had no sider effects. Keep in mind Procrit takes at least two weeks to work so you should be on it ASAP. Best to you.