low hemoglobin & sex

my wifes hemoglobin is 7% is aged 35 and does not take mch interest in sex is it any way connected?

[fightit]

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?

[spectda]

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!

[Diane12855]

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.

[spectda]

I love the response from fightit, it's classic. Poor woman!

Diane how quickly did your hemo drop, where did it start?

Thanks,
Dave

[Diane12855]

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?

[Trinity4]

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

[spectda]

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!

[spectda]

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.

[Trinity4]

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  

[spectda]

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

[Bill1954]

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….

[spectda]

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.

[Trinity4]

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.

[Trinity4]

meant coma, DUH!

[Bill1954]

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

[Bill1954]

Hahahaha!
,,,,,,,,,,,,,,,,,,,,,,,,,,,,,

I can induce commas to, ya know :o)?

[can-do-man]

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

[spectda]

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.

[nygirl7]

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!

[nygirl7]

By the way this original post is years old I was just addressing spectda!

[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!  

[nygirl7]

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!  ;)

[Bali05]

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

[spectda]

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?

[jusjames]

I predosed riba my vl went from 236k to 92k just from predose. No hemolytic anemia



ehm yes slow responce in five weeks i would say fella, up the dose time i think

[Bill1954]

Hi Bali—

The increased riba was driven by prior relapse, and it’s suspected that riba plays a pivotal role in preventing that from happening. In a sense, I was trying to partially emulate an earlier study by the Swedish researcher Karen Lindahl, ’05:

http://www.ncbi.nlm.nih.gov/pubmed/15660393?dopt=AbstractPlus

This was a small pilot study that achieved 90% SVR with GT-1 patients using high dose riba (range, 1,600-3,600 mg/day).

Essentially, I used high dose riba because I could. The Swedish research accessed HPLC (high pressure liquid chromatography) testing to establish serum ribavirin; while this isn’t particularly novel technology, it isn’t commercially available, at least in the U.S.

So, we had to resort to using anemia as a crude barometer. My GI doc thought I’d easily tolerate 2500mg/day, but was hesitant to dose that high for some reason. Moot point anyway, I’m cured now.

I understand you’re now treating? Good luck, and let us know how it goes—

Bill

[Bali05]

That makes sense ,

i am aware of the Lindahl study that`s why I am currently taking 2000-2400 mg.

doing great , minimal sx , just did shot#5. 4wk labs are being cooked.


cheers

b

[spectda]

How can they not try this with resistant people as a matter of course. I mean what is the point of being overly cautious when people are approaching or already have serious liver damage. it seems to me that it's all about liability. We should be allowed to make our own informed decisions as long as we understand the risks. Why the heck do we not have HPLC so we can get the right amount of these drugs rather then guess using side effects as a guide and putting people through repeated TX which itself carries risk. Thankfully some of you found doctors that are willing to help you do what it takes to get cured.

[Bill1954]

I imagine a litigious society and obstacles involving cost as they apply to insurance companies are both very big players in these decisions? Plus, we do still practice evidence based medicine; this is probably the biggest impediment to experimental treatments like this.

“Do no harm”?

--Bill

[Bali05]

"ehm yes slow responce in five weeks i would say fella, up the dose time i think"

and how exactly do you come to that conclusion ? fella !

you must have some riba predose data i am not aware of.

please share , if you will

[jusjames]

well its less than half log thats all, i expect by now you are und having done 5 wks on riba plus 4 wks on combo, what was the load after your two wk PCR

[Bali05]

again, show me some data that shows  0.41 log drop on riba alone during predose

precludes slow response.

you simply don`t know what you are talking about , fella !

[jusjames]

calm down are you suffering a bit ?

[jusjames]

quote
"again, show me some data that shows  0.41 log drop on riba alone during predose

precludes slow response"


personal experiance.......

[Trinity4]

Bottom line, the marker is the 4 wk PCR.  Shame no UND at 4 weeks but hopefully soon though eh?

[Bali05]

actually i had a 1.39 log drop from 2wks soc alone and i found a study where

2,4,8,12 pcrs were done, that said the 2wk pcr was 91% indicative of SVR

when there was a 1.39 log more drop. I don`t have wk 4 pcr  yet .

I am actually pretty happy with my results so far , but it is all about SVR in the

end isn`t it ?

[Trinity4]

That's what they tell me.

[Bali05]

Sorry ,but your personal experience alone is not enough , I would need some more info like actual trial data....

[jusjames]

dont forget its a marathon not a sprint! long way to go yet

[jusjames]

best thing is to see ur 4wk pcr , hopefully it will still be moving in the right direction

[Bali05]

yes i know , but you are not helping....

[jusjames]

sorry????????

[Trinity4]

Keep it real Bali while your waiting for 4 wk.  Then maybe you can take a breath.
You started out with a low viral load and a very high dose of riba.  You are responding ok, but a 1.39 log drop at 2 wks is not fantastic.
Trinity

[Bali05]

1. I am responding , good news

2. My enzymes are normal , my viral load is way down or maybe UND by now.

To me that`s all  great news. One step at a time . If I am UND at 4 or 6 or 8 wk

as long as I am UND by wk12  is fine by me.

No , it is not fantastic and I saw that coming so that`s why I am doing all the extra effort

Geno 4 is not exactly considered easy and it shows.

[jusjames]

i know two G4 for RVR;d and did 24 wks and got svr, so should be ok
they had higher VL than you too and did not predose or take supps

[Bali05]

i know g4s that are non-responders or slow responders
would not do 24wks if i can help it , min. 36wks or 48.

[medicmommy]

Hello!
I haven't visited this side much in the past year, so I don't recognize many names anymore...I became UND on tx 2 1/2 yrs ago, and SVR fro 18 months...At week #12, my HGB and HCT mostly leveled off at 8.5 and 26.5 with my Neutrophils hanging around 200...Dr didn't think rescue drugs were necessary even when things got a bit worse and I was experiencing chest pain and shortness of breath (man, if only I'd had the energy to roll some old lady for her oxygen bottle...) I look back now and realize I should have gone to the ER for care but I was afraid I'd be taken off of tx...At the time, I also had thyroiditis -caused by an uncommon side effect from the interferon that ticks off your thyroid and sends it into hyper mode. This sped up the hemolytic anemia. Without that, I'm sure my anemia would have been more stable.
Your question about pre-dosing with the Riba? Its because Riba is fat-soluble, and it takes several days to build up to theraputic effects in your body. When you finish txing, it takes several weeks (months in some) to purge it from your body. This is one of the reasons for SVR status at 6 months rather than sooner...I suspect this may also be why some people relapse within 1 year (because the riba remnants have been purged from their bodies)....Just my 2 cents-worth...MM

[spectda]

it's wonderful to hear that you are cured after what sounds like a very tough battle. It's pretty crazy what we have to put our bodies through only for a chance at svr, but of course what alternative do we really have.

I thought that riba and interferon took about a month to reach therapeutic levels and that's why they were doing 4 week lead-ins with the boceprevir trial I am currently part of. I guess if people become und after a couple of weeks it can happen much sooner.

Thank you for explaining and for sharing your experience-Dave

[spectda]

I hope it goes well and u get your und soon. Best of luck - Dave.

[Bali05]

thank you dave,

medicmommy has a good point, i believe now that if i had double dosed on inf

the first week or two , i would be und already. did not have enough stomach to

do it on my first tx without hep doc support. hopefully i will never have to but

it is already noted should there be another one.


b