HELP ME UNDERSTAND? ANIEMIA @ IRON

[jmjm530]

In general...

1. Anemia is caused by the treatment drugs -- primarily the ribavirin,  not by a deficiency of iron. This type of anemia is called Hemolytic Anemia.

2. Iron supplementation is not a good idea on treatment unless your Iron Stores are low.

3. The two tests for Iron stores are Ferritin and Trans Ferrin Saturation (TIBC). If low iron stores are suspected, ask your doctor for these two tests.

4. The helper drug Procrit (epo) will not work as effectively if your Iron Stores are low.

5. So you don't get alarmed, most people on treatment do not have low iron stores and therefore do not need supplemental iron.

Hope this helps,

-- Jim

PLEASE , IF ANYONE CAN PUT A LIGHT ON THE UNDERSTANDING OF: WHY WE GET ANIEMIA WHEN WE ARE ON TREATMENT FOR HEP. C AND THAT IS A IRON DEFICIENTEY( CAN'T SPELL TO GOOD ) THAT IS WHY WE GET TIRED AND FATIGED, BECAUSE OF THE LOW IRON IN OUR BLOOD, BUT IRON IS BAD FOR US AND WE SHOULD NOT TAKE IT WHILE ON TX. BUT IF WE DID, WOULD IT HELP US WITH THE ENIEMIA ?

                                                                                A LITTLE CONFUSED,

                                                                               DEBBIE :)

[jmjm530]

Just to be clear, never take iron supplementation while on treatment (or even before treatment) without checking with your liver specialist. Iron overload is a real concern for the Hepatitis C patient and can potentially cause harm. If your doctor does suggest supplemental iron, unless you have drop-dead confidence in his credentials as a liver specialist, ask him specifically why he thinks you should take supplemental iron. Even if you have confidence, you might want to ask him/her anyway.

-- Jim

[HappyDeb]

YES IT DOES, THANK YOU . I HAVE ALOT OF IRON IN MY BODY NORMALY, BUT NOW I UNDERSTAND WITH THE EXPLAINATION OF HEMOLYTIC ANEMIA. I AM GOING TO CALL UP MY DOCTOR AND DISCUSS THIS ISSUE BECAUSE I AM FEELING LIKE PO, POOH.
HAVE A GREAT DAY MY FRIEND !!!!!!!!!!!!!!!!!!

                                                                     SINCERLEY,
                                                                     DEBBIE :0)

[jmjm530]

"Feeling like "POOH" is quite normal on treament as is anemia. Many of us are anemic on treatment. From your profile I see you had almost a two-point drop in hemoglobin (hgb) during the first 4 weeks of treatment. That's probably why you feel so tired. Your hgb drop and the way you feel is normal for tx. If the hgb doesn't drop much more, your body may adjust some and you'll feel better. On the other hand, if your hgb continues to drop, you may end up needing the helper drug Procrit (epo). Best thing is to have your doctor monitor your hgb on a regular basis until it stabilizes so that they can intervene with Procrit in a timely fashion if necessary. If you start feeling significantly more fatigued, don't be afraid to call your doctor (in addition to your regular appointments) to discuss the situation and probably ask for another CBC (hemoglobin test).

All the best,

-- Jim

[debnevada]

In a related question, what is the difference between iron and folate? My H and H and rbc and wbc are okay, good even for treatment but because of some of the indices (red cell distribution and macrocytosis), my internist gave me a B12 injection and asked me to take B12 and folate. Any dangers there? I am assuming not because my internist is real familiar with Hep C for an internist.

deb

PS: By the way, my worry was needless, i did not break through virus, still UND at 18 weeks in spite of the doubling of the LFTs

[jmjm530]

As I understand it, B12 and Folate are needed to make red blood cells.I also had some B12 injections during treatment and my doc and NP said they were harmless in terms of my liver. Can't say they helped, but didn't seem to hinder. Still a good idea to mention whatever you're taking with your liver docs. Great news that you're still UND!

All the best,

-- Jim

[debnevada]

well actually the b12 seemed to help three or four days afterwards. I wouldn't mind getting some more or doing them myself. I'm looking for some OTC folate and B12 as well.

Thanks as always Jim. I'm so grateful for your wisdom

[HappyDeb]

I just got a hold of my doctor and I am going for my cbc, bld. ct. and thyroid blood work tommarow morning and going to see my dr. this friday to discuss my alternitives to my fatigue, if any thing ,I actually  just drank an emergen-c with complete b's in it,  and I'm not feeling that bad today, who knows.all I know is that if I can nip it in the bud fast with this horrible feeling with some meds. I will do it. I have a busness to run , and it's getting to be a little bit of a challange. we are all just trying to keep one step ahead of this tx.

                                                        thanks to all of you out there , Debbie :)

[jmjm530]

Best OTC source of B12 would be a sublingual source found in drug/health stores, etc. Alternatively, if you don't mind giving yourself IM (in the muscle -- think longer needle :)) injections, B12 shots are super cheap (around 1-2 dollars) if I remember correctly. I did my own shots every other week for awhile. Best to get the individual vials, the correct length (IM) needle, and a one-time instruction from your NP, or (not that I'm recommending it)  do-it-yourself from pics on the Internet like me. LOL.

All the best,

-- Jim

[Proactive]

Hi Jim,
You mentioned hgb stabilizing, is that the typical hgb response to treatment or is a slow decline hopefully holding above critical areas until treatment is over a normal response? Had labs done this morning (40 weeks completed)and my hgb is down to 12, 2 pt drop in the last few months and a 5.2 pt drop total so far. As you may remember, for the past 28 weeks I've been on higher than weight based riba dosing @ 1600mg(400mg over).
I'm worried about having to make a possible future decision sometime in my last 32 weeks about hgb/riba reduction/procrit etc. Would one choose to lower riba dose to weight based or ad procrit to the diet if hgb hit the magic #10? TIA for opinions.

this mornings week 40 lab results
RBC-3.34
WBC- 2.8
HGB- 12 (started at 17.2 on 1600mg riba)
HCT-34.7
PLT- 215 (trending higher last few months)
NEUT- 37
AST-19
ALT-20
last pcr was negative

[jmjm530]

It's a very individual thing and sometimes it can stabilize for awhile and then head South again. Intervening factors could be change of riba dose, addition (or change) of Procrit dose, body weight change and just individual reaction to the drugs.

In your case, your absolute hgb number (12) isn't very bad, however you've had a very big drop from baseline, albeit it somewhat gradual (last two points over a few month period). Assuming you can tolerate the current hgb level, then the question becomes what happens if it keeps falling. Again, because you['re still above the 'magic' "10", a lot depends on how well you're tolerating the lower hgb levels as well as your general health -- any other conditions, such as cardio history, etc.

If you and you're doctor thinks you can tolerate things as they are, then you don't need to do anything. If things get worse, then it's an unclear decision (reduce riba or add Procrit) because you're already over the riba limit.

One strategy might be to reduce riba until you get to weight-based, and only then add Procrit. A more agressive strategy would be to hold the riba and add Procrit to the mix, keeping in mind that it may take 2-4 weeks for the Procrit to kick in.

If you were like stage 3 or 4 and/or earlier in tx (before non-detectible) then the second option would be very clear to me (hold riba and add Procrit). But since you're later in tx and a stage 2, it might be reasonable to just lower the riba until you get to weight-based. That said, I fiercely held onto my riba (1200mg/day) even late in treatment (I treated 54 weeks) even though I had an RVR and even though both my doc and NP told me I could back off a bit. It really comes down to how agressive you want to be and no one can really give you a right answer to this because there isn't any. If it's any consultation, Procrit doesn't seem to have that many noticeable side effects (except higher hgb/more energy) for many of us. But as you know it does not carry a black box type of warning.

All the best in your decision and treatment outcome.

-- Jim

[Proactive]

Thanks Jim, I can tolerate current hgb levels, and will hope the bridge to lower levels won't be crossed. But if it has to be crossed, I guess I would push to stay on the high dose riba and add the procrit, if the doc was in agreement of course..
thanks again,
;^)pro

[geterdone]

Deb, while discussing with your doctor about B-12 or Procrit, jim makes two very good points.

3. The two tests for Iron stores are Ferritin and Trans Ferrin Saturation (TIBC). If low iron stores are suspected, ask your doctor for these two tests.

4. The helper drug Procrit (epo) “will not work as effectively if your Iron Stores are low.”

I had started Procrit at week 4 and an Iron supplement prescribed by the doctor because of low Iron stores and as a precursor of starting the procrit. I had taken the supplement for 2 months but in the last month started to feel a discomfort in the liver area and started getting hot flashes at anytime. The next doc’s appt. he ordered Ferritin test and was told shortly after to stop taking the Iron supplement. It seems that in between doc visits my own body started producing the Iron it needed and that the extra Iron was causing Iron overload and causing other problems. I am still on the procrit, once a week but with out the Iron. As jim said it takes about 3/4 weeks to feel the difference. If you and your doctor should decide to go the procrit route and he recommends the Iron supplement, pay attention to what your body is telling you outside of the main stream sx’s.

jasper

[debnevada]

you been quiet lately. you hanging in there okay?

[geterdone]

All ok, fell off board and got caught in a rip current, someone lengthened the tether line so, just floating on back and going with the flow.

Thanks!
jasper

[Tallahassee]

Speaking of B-12 supplementation... I also was taking occasionally B-12 sublingually and it was giving me some energy.  I asked my Dr. for B-12 shots prescription and he ordered to measure my blood levels.   Apparently, I have significantly higher concentrations of B12 than considered normal.  This was in January... after that I did not take any supplemental B-12 and I seldom eat red meet, nevertheless, my levels of B12 are still high.

My quick Google search indicates that elevated levels of B12 may indicate many potential health problems... including excessive liver cells death.

Did you check your B12 levels?

Always thank you for constant support and great advice!

All the best!