Anemia Update

[BoceprevirGal]

Hi Folks, so, my HGB went from 10.0 at 4 weeks, to 9.9. at 6 weeks, and I am feeling progressively more like I cant get a deep breath, a suffocating feeling, very claustrophobic!  My Doc prescribed the Procrit, my specialty pharmacy does carry it ( My Doc had said they didn't...??/), and they will get prior authorization for it, justlike they did, for the other meds, so all should go well, but all this may take until next Tuesday (I go to the Doc every Tuesday, it's a clinic, only open tues, and weds...grrr)
   Soooo...I'mm not real worried, cuz the HGB is dropping gradually, but does anybody have any suggestion, on how to get a DEEP breath, or any other techniques, that help with hemolytic anemia? I also heard that Procrit takes awhile to kick in, so I am trying to stay calm, not panic, etc...

[BoceprevirGal]

Hemolytic Anemia is different, it is caused by the meds you are taking.
Your Doctor should treat you now, if you are as low as 9. Generally,if the HGB goes below 8 a blood transfusion is in order.
   Your Doctor can reduce your Ribaviran, or prescribe you a rescue med, called Procrit.

[anyonelistening]

If my hemoglobin level is low does that mean I have anemia? I thought anemia was due to low iron

[rockymoe]

Yes I have food adversions I can't eat salty things and I can't stand sugar. I also have a texture thing going on bread crckers anything like that I can't eat. Can't eat red sauce because it causes the gerd issues to put met in agony. My laundry is really behind because my washer and dryer are in the cellar and once the hgb starts dropping stairs are really not my friends I have to keep stopping.

[BoceprevirGal]

Ah, good idea!  My poor husband was very sweet tonight, bumbling around in the kitchen (He lost his right leg, in a motor-cycle accident, years ago, so he was using his crutches)~
    I did hear him scream, and a plate broke, and it does look like a hurricane went of in there. Also, he put cheddar cheese on my burger, I had some-how expected American cheese....and used store bought salad-dressing, it was Balsamic Vinegar, but I was thinking, "why didn't he just use the oli and vinegar, and make home-made dressing?".
   It's funnym how we get used to doing everything ourselves...I'm sure he thinks these horrible little thoughts when I prepare dinner. I just kept all the negative thoughts to myself (I think the Boceprevir is making my food taste funny) and complimented him, for shopping and making dinner, wow!
    Now, to get the pre-teen sons to take out garbage, and do laundry,  next on my list!

[BoceprevirGal]

  The anemia is a tough one, I looked up an article for you, but I see you found the one you were looking for : )  
    Hopefully you are getting your blood work done soon, I'm geting mine tommorow. I still cant tell if the Procrit is making me feel any better....I am getting progressively more tired, but no longer feeling asthmatic...it's so hard to tell with someof these vague symptoms, like: little dry cough (which I never normally have)
    Keep going easy on yourself, Idyllic, you're doing a great job~ I walked the dog in the morning, but not in the afternoon or evening...luckily, we have a back-yard, but I'm not looking forward to when my energy returns...and going out to find the land-mines out back!

[Idyllic]

9.7 is low! That must feel like swimming in quicksand! If my Hgb stays at 10.1 then I will deal. I had a pretty good today and actually wondered if I forgot my Riba since I wasn't short of breath and I didn't mind going grocery shopping. The thing is, I planned as much as I could to not have as much strength & energy for a couple of months but when I was in a situation where I needed it and didn't have it, I freaked.

[rockymoe]

You need to set your family down and tell them that you cannot funtion like you did before tx. I try to keep meals easy I do alot of crock pot meals since you can just throw them in and your done. Also they have those slow cooker bags that you can just throw away. Also I do my shot on Monday so my husband knows Tuesday is take out night. Search post for the letter to people who don't have hep c. Give your husband and kids a copy.

[Dee1956]

Hey there you are doing great.  Don't beat up on yourself.  You do not need to "buck up"  Some docs will give rescue drugs, some will reduce riba to help with the anemia.  My doc did neither.  All they said was that I would be better after I finished the Incivek.  When I saw posts on here to the contrary and asked again I was told I was stable and if I felt breathless or weak "lay down" I was not happy going from 14.8 to 9.7 however there was no choice
You are very kind to everyone on here, be kind to yourself.
I wish you the very best.
Dee

[Idyllic]

Hey Bo, Thank you so much for responding to my question. I didn't mean to hijack your thread or anything. Yeah, I am reluctant to reduce my dose of Riba.  I recall my doctor mentioning that would be the first line of action while on the Incivek but not after.

I found the article I was looking for. It said this:
Finally, this pooled analysis showed that ribavirin dose reduction had no apparent effect on SVR in the telaprevir-containing arms (12 weeks) but seemed to have a deleterious effect on SVR in the arms without the protease inhibitor.

It was in this article:
http://www.clinicaloptions.com/Hepatitis/Journal%20Options/Collections/2011%20JO%20Hepatitis%20Volume%205/Articles/Bacon_NEJM_2011/Commentary.aspx.

Anyway,   I think I am going to hang in there til Monday. 1,000 is the right dose for my height and weight. Maybe I just need to buck up.

[jules2551]

Yes Bocep they go by weight.  Hope you are feeling better soon!

Have a great day!
Jules

[BoceprevirGal]

My Doctor hasn't talked about any Riba reduction...I take 1,200 mgs a day. My HGB was 9.4 at week 8.
   I dont think the hemolytic anemia is life threatening, until it is under 8, but when it drops, it definiteley affects "quality of life". This means that I lay in bed half the day, and when I finally got up, moved slow, felt nauseous, etc.
   I have heard they also go by weight, they are more cautious with a small person, someone who is short, and petite, is more likely to need a reduction, from what I've read.
   I am a big, ol Gal....taller than 5'8''...but still, hating this anemia, it's such a downer : (
   Wait to talk with your Doctor, if you can...I just kind of took to bed, letting stuff pile up on me~

[hrsepwrguy]

I was typing a little fast it was still at 11.1 at wk 16 and rebounded to 11.7 at wk 20 and then to 11.9 at wk 24 and has held there

[Idyllic]

Wow. Your progress is encouraging.  11.1 at wk 12 to 16 at week 20 is quite the rebound.  I don't know though. I am not sure I can hang in there for 8 weeks to see if I will have the same experience.

My baseline on 13 Jan 2012 was 13.5. I held steady until week 8 or so and now it is 10.1. I plan to call my doctor on Monday; it's just if the first line of defense with Triple Therapy is to reduce the Riba then I was wondering if I should try that now.

[hrsepwrguy]

Hi, my HGB at screening was 17 was 11.1 at wk 12, held there until 16 at wk 20 was up to 11.7 at wks 24 & 30 holding at 11.9 so for me yes it did rebound some after incivek, I have not had any rescue drugs or dose reductions

[Idyllic]

I didn't know who to address this to.

Do Hgb levels rebound after stopping the 12-week Incivek? My last Incivek was a week ago (06 Apr 2012) and my Hgb was 10.1.

I see some posters who are (or were) taking Incivek start Procrit right away yet some reduce their Riba. Isn't there a protocol for this?

Being that it is Saturday I was wondering if I should reduce my Riba from 1,000 to 800. This is not something I want to do however I simply cannot function as well as others seem to be able to even with lower Hgb levels.

Also, I am certain I have seen a link that address SVR and reduced Ribavarin dosage while on Triple Therapy however I cannot find it - and trust me I have been searching. I even found the MedHelp Archives for the first time.
http://www.medhelp.org/HealthTopics/Hepatitis_C.html

**I wasn't sure to start a new topic or not.

[rockymoe]

My Doc. has me going weekly.

[rockymoe]

My Doc. has me going weekly.

[brianmo]

I did weekly blood draws to watch hgb.  When it got to 9.2 my doctor still felt I was stable....really??  She did not want to do anything but I asked to reduce RIBA from 1000 to 800. She did and within a few days I was feeling better, not great but better.  It stayed at 9.4 the rest of tx. No transfusions, or drugs.  All doctors seem to look at this differently and have different opinions. At first when hgb gets low it's scary to us. Heart beats rapidly, can,t walk across room, etc. it's good to keep in close contact with doctor.  Good luck.

[orphanedhawk]

My doctor had me doing weekly cbcs to check my blood levels. This is a good thing. I had to take nuepogen which was based on my anc.
Once my levels were stable, he switched me from weekly to monthly labs.
If your levels have been stable, there is no reason not to do them less often.

[80mecheng]

My doctor has had me doing CBC blood draws weekly for about 2 months.  I told him I feel like a pin cushion.  I have another Thursday and then finish the medicine in a week and may tell him no more weekly tests.

[BoceprevirGal]

My Docotr always seems so busy it's a clinic. She only said she ws gonna start me on Procrit, becuz I had dropped to 9.9, but I go to this clinic once a week, so they may be planning on doing that, although, thus far, they are testing my blood every other week, which is freaking me out. Somuch can change in a 14 day period, and I am on Victrelis, these PI's are not even FDA approved for a year yet. We are the trail-blazers...sigh

[BoceprevirGal]

Yeah, my insurance company okayedit, but my doctor seems to be dragging her feet, about faxing them the prescription, I was actually practically stalking her at her office today, but all I did was manage to write her a note...grrr!
   Ya know...you are right about the thought of the blood transfusion being scarey! I remember, when I had my first son, at age 21 yrs, back in 1982, after the birth, I lost a ton of blood, and they wante to give me a transfusion, and I REFUSED it! I had read about three cases of this "Cancer" that was being spread via blood transfusions, and the newspapers were refering to the HIV virus, which simply came out of nowhere!
  I do get my Flu vaccinations though..ahhh

[80mecheng]

For what it's worth, I had similar response (tough time getting my breath, extreme fatigue just going from my car to the office or store) when I got below 10 at week 18.  I am on 3X with Vic.  When hmg hit 9.2 and was starting to drop fairly quickly doctor suggested a transfusion which I told him was not my first choice if it could be avoided...what else do we not know about.  After a 2 week battle with the insurance company mostly over paper work started Procrit but in 7 weeks hmg climbed from 9.2 to 10.2.  Feel better but hate the shot, it hurts and makes me nauseated for 3 days.  I'm done in 9 days so just hanging in there.  Best of luck.

[working dog]

i was just saying your pulse will most likely go up so you don't get freaked out when it does...i took my bp and pulse at times throughout tx just for my own info...after 5 weeks of tx i could feel almost exactly what my hgb was...anemia can be tough...although once you get use to your hgb it does get easier...my hgb was much easier to take after the incivek...with just the riba/interferon low hgb was more tolerable...hang in there and keep up on the blood work...billy