I would be more concerned about her health than her sex drive. With a hgb of 7 it is amazing she can do anything. Is she on tx?
I had to repost this! it's sad but quite amusing to my messed up TXing mind! (sorry sushilsharma)
I was looking up hemoglobin levels trying to figure out if I am heading toward anemia (dropped from 14.8 to 13.1 on the two week blood draw, don't know where it is now!
Kind of makes me feel sorry for his wife. I'm at 10.4 and feeling like my legs and arms weigh 200 pounds each... She must have felt horrible.
I love the response from fightit, it's classic. Poor woman!
Diane how quickly did your hemo drop, where did it start?
Thanks,
Dave
My hemo was 13.3 when I started tx and down to 10.5 by the 4th week, then the next week it only went down to 10.4. Then my neutrophils dropped below normal... I don't know the numbers right now, but that didn't make me feel as bad as the hemo drop. I think I'm getting used to it now, or it hasn't dropped any lower because I'm not feeling so wiped out now. I go back for more labs on the 20th.
What week are you on in tx?
Sushilsharma, I would say your wife is most definitely affected by an hgb level of 7.
She is actually in danger and requires a blood transfusion at this point. As spectda indicated, it's amazing she can still function never mind participate in sexual activity.
Spectda, your hgb is still quite good. You want to see that hgb take a dive even if it is causing discomfort. Low hgb is an indication the body is metabolizing the ribavirin effectively. Most hepa's don't offer Procrit until the hgb gets in the 9's.
Some people feel crappy even when the hgb is still within an acceptable range if the drop is rapid. Usually, the body will adjust to lower hgb levels after a period of time but while it's trying to adjust it can be miserable.
Trinity
I read that a 2.0 drop in the first two weeks is a good indicator of becoming anemic, and of course those who become anemic have a better chance of SVR!
Hi Trinity
I know 13.1 is not a problem level, and I am not feeling very sick from tx, just a bit tired in the brief time I've been treating. Of course I am not looking to become anemic (sort of), just that I know it's often a good sign in treatment.
You bet it is! There was very saavy member named jmjm530 who no longer posts but he and I went round and round because he always stated the presence of hemolytic anemia indicates a better chance of SVR. I was a slow responder to begin with and I never had the 2.0 drop throughout my tx until the last two months when it hit 10.2 which was the lowest it ever got.
I did become UND around 16 wks and I would argue with Jim that I was taking 1000mg of ribavirin daily and I only weighed 113 lbs so there was no way my body could tolerate a higher dosage. He would argue back saying the dosage is not as important as how the body is metabolizing the ribavirin and I could probably have tolerated a higher dosage. Ya know, when I became UND even though it was later than I had hoped for I figured it wasn't relevant and basically argued the point for the sake of argument. That was back in the day when real information, honest criticism and argument could prevail without people getting their knickers in a twist. Well, low and behold I didn't SVR even with 72 wks of tx so there was much truth to what he said. Not saying I didn't SVR because I never became anemic but the fact remains had I known then what I know now I would have increased the riba since I always had extra bottles and still do somewhere. But keep in mind, many people still SVR without experiencing anemia.
Next tx, I'll be looking into IR and my doctor and I will be having a very serious discussion about ribavirin dosage. Actually, I want to predose riba for 3-4 wks prior to starting the interferon and hopefully a PI. Not sure what kind of effect high doses of riba and the addition of a PI will have on my body but I'm certain it will be discussed before initiating treatment next go round.
Trin
1000 mg at 113lbs, yikes! and for 72 weeks. No one can say you are not committed.
Next time you're gonna get rid of it! At least it's a good sign that you eventually became und, especially when you retreat and add one of the PIs. Which interferon did you use by the way?
It makes sense that no matter how much riba you were taking that perhaps you weren't absorbing a high enough percentage. You would think they could measure the level of interferon and riba in our blood and manage TX in that manner rather then by symptoms.
-Dave
Dave, I’m case in point to Trinity’s statement. I took 2000mg/day riba (~22mg/kg/day) for 96 weeks, never developed significant anemia, and achieved SVR regardless. Plus, I had *very* significant insulin resistance.
Hmm….
Bill did they give you that much riba after several TXs or did they increase it as you went? I weigh 185 lbs and I am only getting 1200MG, but of course I am very lucky that I will be getting the Boce soon.
I understand that what you and Trinity are saying is what you absorb is not necessarily related to your weight, a lot of other factors are involved. I am very glad that it worked for you, it sounds like you were very involved and thoughtful about how to approach treatment.
72 weeks and 96 weeks are just so hard to imagine. I have trouble thinking about another 10 months let alone 1.5-2 years. Then again, I will do what it takes to get rid of this, as I think most of us would. Hearing the way you treated makes me believe that there is always a way! We are all very lucky to have the advice and the benefit of both of your experiences.
Bill, you are medical phenomenon and a heck a nice guy too.
I have many bottles of Meformin and Ribavirin hanging around. I reckon I could induce a comma without too much effort.
Dave,
Thanks for the kind words and I know you'll beat this first time out with the Boce. I was on 180mcg of Pegasys.
Boy, it’s a bit of a story, Dave. The first time I treated I was prescribed Pegasys and 1200 mg/day riba. I didn’t make a 2 log reduction at 12 weeks, so we regrouped with 1800 mg riba, and extended to 56 weeks. This was cutting edge in 2005; mucking with treatment was still a somewhat novel concept back then. Despite this, I relapsed within 30 days post treatment.
Given stage 3-4 fibrosis, the fact that I subjectively tolerated therapy well, and that my labs held together, the next time at bat we changed IFN to Pegintron, increased riba to 2000 mg/day, and extended to 96 weeks. This one did the job :o).
My assigned Pegintron dosage was 150 µg/week, but ordered in vial, rather than ready-pen allows one to ‘lick the bowl’. They overship a 150 µg vial with 216 µg; this is to allow drawing up and wasting off for air bubbles, etc. I was able to *very* carefully salvage and inject about 205 µg/week, with blessings from my doc.
I was fortunate; my white cells, red cells and platelets held up well. Hgb never dropped under 11.2 the entire time, and no rescue drugs were required.
Things are rapidly changing, and hopefully not long from now, we’ll look back with amazement that this stuff was ever used. I think most hepatologists aren’t particularly proud of interferon therapy; it’ll be good for everyone when this product is behind us.
Good luck and take care—
Bill
Hahahaha!
,,,,,,,,,,,,,,,,,,,,,,,,,,,,,
I can induce commas to, ya know :o)?
Sense you will be starting boceprevir very soon make sure you keep a close watch on your HGB, that one of the side effects that can really kick in fast.
cando
Thanks,
They take the blood every two weeks, and then it takes a week or more to hear where I am at. perhaps if something was looking like it needed attention they would let me know sooner, Ill ask next week when I go for the blood and check-up to insure they will react quickly. I assume that Merck wants to avoid serious adverse events during their trial.
I decided on my own since i had geno1A and also geno1B that I needed extra meds (i was wrong). I was prescribed 800mg for my weight but begged up to 1000. Then I took an average of between 1400 - 1600 every day just depending on what i felt like I guess. Stupid me taking too much. I did not need to double dose that much because it did really affect me.
I had a blood draw at week 2 and then a few days later I was fainting everywhere. I had no idea what was going on until everyone on this forum yelled ANEMIA. At week 3 I went to the doc complaining of ringing in my head, no breath, passing out (fainting hurts in your head I never knew that before!) etc and he tried to send me to an ear nose throat doc for the ringing and a chest xray for the breathing difficulty. I was like GAH no it's the anemia dude! when he finally agreed and did my blood draw he found that it had gone from 15+ to 9 in ten days.
It's not always the 'number' but also how fast it goes downwards too that matters. Say you slowly slowly slowly went down from 15 to 10 you would be OK perhaps - out of it and tired but OK. When it happens quickly well that is the part your body really cannot handle.
Even taking procrit just getting me back up to 10.5 felt 'normal'. My body was happy because it had more oxygen floating around again.
Oh yes I usually got my CBCs back in just a day. Those dont have to go out like PCRs do. You should check with them and see I usually just called after 24 hours and they would fax over my results. When it comes to anemia every second counts once you get under ten.
Believe me!
By the way this original post is years old I was just addressing spectda!
Thanks for the comments and info. The original poster posted once and never returned. When I was searching hemoglobin I came across the original post and found it very funny because the husband was so lame, and the respondent answered so perfectly. I guess it didn't amuse anyone but me. It just seemed so over the top!
Yeah it was absolutely ridiculous which is I guess why we all ignored the post which as you know it totally unlike us to do! Someone that incredibly lame you think we would have said something like Grow Up Loser but you are right the person answered perfectly! ;)
bill,
how did you figure out you needed 2000mg ?
I have become very skeptical of the hemolytic anemia and tx response connection.
If that were really the case than how come people like you did not get anemic
and SVR and others have huge drops and end up slow responders or non responders.
I predosed riba my vl went from 236k to 92k just from predose. No hemolytic anemia
yet obviously no absorption problem.
i am looking into my vit b12 right now
http://www.jstage.jst.go.jp/article/tjem/209/4/209_347/_article
b
What is the purpose of predosing the Riba? Is this to determine at what level of Riba the virus is really declining before adding the interferon. Is the reason you don't predose the interferon because they already discovered that it has little success on it's own? I assume they did studies with Riba TX alone at some point, if so does anyone know if the Riba had more effect by itself then the interferon did by itself?