Transfusion

[Sweetie6852]

Had to go into the hospital this week for a couple of pints of blood - the procrit just didn't kick in - and I could do absolutely nothing I just couldn't breath.  I felt like a baby but as I couldn't breath I had anxiety attack and chest pains so I ended up in the ER.  Because of my counts - my Red count went down to 8 which others have said theirs was worse, I never felt so awful in my life and my white count dropped too. Well the Dr took me off the 1200 mg of ribavirun for a week and I still continued my PegIntron.  I go back to Dr's on Tuesday - My counts had dropped in 4 weeks from 15 million to 256000 and I had shot 6 last night - will I still be on target do you think with a week off the Riba and now with 2 procrit shots into me and a couple of pints of blood - think I'll make it?  Genotype 1a

[Alady1620]

Personally, I wouldn't stop the Ribavin totally.  Most docs will simply reduce the dose.  Did your gastro/hepa doctor tell you to stop the medicine or was it an ER doctor?  If you haven't discussed this with your treatment doctor, you need to ASAP.

You have to know that you're in a critical stage of treatment.  Stopping the Ribavirin totally only 6 weeks in will certainly decrease your chances for SVR.

Nobody can tell you what to do.  The above is only my opinion.  You know your body better than anyone and you should do what is right for you.

[Sweetie6852]

It was my Hep Dr that took me off for a week until my numbers came up.  The ER docs of course and primary care want you to stop totally but I'm still taking my shot and a week off ribavirun per their orders.

[Maui lover]

My husband was also taken off of his Ribavirin two weeks ago.  His hgb went from 13.3 before tx to 7.4 five weeks into treatment.  He was also started on 40,00IU of Procrit almost four weeks ago.  His last cbc on 9/29 showed his hgb at 8.8 and we are waiting for the results of the cbc that was done yesterday.  He did have a 4 week PCR which came back undetectable, so that's good news.  We are both very aware of what stopping the Riba can do to his SVR chances, but he was feeling so badly that he was ok with taking a little break.  Now he's feeling what he says is 100% back to normal.  The IFN still kicks his butt on the weekends, but his quality of life has greatly improved.  He's dreading going back on the Riba, which could be as soon as this week, but he is ready to move forward with his treatment.  

Different doctors do different things.  His doctor didn't want him to have a transfusion unless his hgb dropped below 7.  He also was so concerned about the anemia that he felt it was better to temporarily stop the Riba and get those counts back up rather than reducing it.  At first I was very angry about this, but after a long discussion with the doc I was ok with it.  

Hang in there!  I hope you're feeling a little better now.

[Sweetie6852]

It's good to know someone else is going through the same thing - I go back Tuesday - that would be a week off - with the couple of pints of blood my Hemoglobin came up to 11 and I'm feeling actually more normal than in 6 weeks - But they are the experts and told me I'd be fine - my body needed to recover.

[mycoldfeet]

I don't want to poop in anyones cheerio's but even three days can bring your riba serum leval down to where they should start you from day one, I had my Doc take me off riba for a week on my 1st 48wks, back then they thought it was fine just to continue on, now they know that 2 to 3 days is too long completly off riba, well long story short I relapsed and doing 72wks now. I think clinicaloptions.com has more on that, but make sure your Doc is up on the latest.

[cuteus]

these freaking drs need to RX the procrit BEFORE it gets too low! not wait until it is so low, it will take drastic measures to stabilize it!  I was lucky to get it at 10.2 and it went up within a couple of wks with just one riba reduction.  they need to better manage tx for many of us!

[dancegirl54]

I know you have one of the best liver docs in the country who IS up on everything - the appt if I am guessing correctly, is with the NP? I would make sure you communicate directly with the doc and it has been m experience that he responds directly to email
If you appt is with him then all the better
so glad you are feeling better

[GrandOak]

I wish good luck to all of you reducing your ribavirin.

When I started, my Hgb went from 13.5 to 9.8 in 5 weeks.  First doc simply cut riba in half.  Switched docs and was immediately put on Procrit. It took me 5 months to get Riba back to full dose, olaying with Procrit dose all along to try an keep Hgb above 10.

My VL dropped from 72,000,000 to 2,400,000 in 8 wks and to 1,800,000 by wk 12, then shot back up to 2,900,000 at wk 24.  I attribute much of the breakthrough to the riba reduction in the first 5 wks of tx, although it might be hard to prove.

But each person is unique on this tx and perhaps mine case is a unique one as well.