Can I take iron tabs during tx?

I have problem with my hemoglobin it is going down every week and my white blood cells as well, the Dr. said if they can't be stabilize we will have to stop the treatment which i don't think i want to do, the Dr. didn't mention anything about the risk of taking of taking iron during tx but i read somewhere and i don't really remember where that it is not ideal or something like that, my question is have anyone faced the same and what you did if yes? is it ok to take the iron tablets?
please advise
Thanks

[Bill1954]

This is a subject your doctor should address. Typically, HCV patents have iron storage problems, and additional iron can be detrimental to their liver.

Hopefully, your doctor performed an iron study as part of your baseline examination, and should know whether or not you’ll benefit from supplemental iron.

If your hemoglobin and white cells are dropping drastically, you might be a candidate for one of the rescue drugs; Neupogen can boost white cell production, Procrit/epo can be used for red cells. However, adequate iron stores need to be in place for the Procrit to work effectively.

What is your hemoglobin currently? And absolute neutrofils value?

Good luck—

Bill

[nygirl7]

Procrit has been essential for saving many of our courses of treatment.  In fact (and this is just a guesstimate) I'd say over half of us that have done treatment easily have been on it at one time or another.  Many doctors aren't really aware that they can prescribe it for a hepc patient - but it does work great with hemolytic anemia. I have never seen one person have problems from it in all of the years I have been on here either.

[nygirl7]

BTW - no generally you don't want to take iron at all costs so find out your numbers and tell your doc you want the Procrit. They will not give it to you unless your hemo drops to under ten generally and at that point you will be feeling the effects pretty strongly.

[newleaf09]

Drug-induced anemia (HGB below 11) is different from iron-induced anemia, so the treament is different. I was on TX through a clinical drug trial so they provided the Procrit to keep my hemoglobin above danger levels.  My insurance company paid for the Neulasta (same as Nuepogen but more expensive and the effect lasts longer).  I had a $100 co-pay for the Neulasta, well worth it.  Those 2 drugs can keep you safely on the treatment meds and the Procrit, after a few weeks of weekly shots, can also make you feel much better.

Many people do stabilize after the first few months of TX, but it can be hard to get to the stabilization point without the rescue meds.

[HCA]

In order to help you need to know,
a) How many weeks of treatment have you done?
b) Have you had a viral load test during treatment-what is it and what was it before treatment?
c) What are your current haemoglobin and white cell values?

The depletion in red cells can be managed either by taking a hormone supplement (procrit/epoetin) or by reducing the ribavirin dose.If your viral load is undetectable this can be safely done.
Similarly the white cells can be artificially boosted,or the dose of interferon reduced.Reducing or skipping interferon is not desirable.
Iron tablets are not really the issue here.

[Shehabi]

Thanks to everyone for the reply
Bill1954,

I have done 6 weeks of tx and my hemoglobin was 15.4 when i started, every week it goes down by 1 or at least 0.5 so now it is 11.2.

HCA,
a) How many weeks of treatment have you done?
6 weeks
b) Have you had a viral load test during treatment-what is it and what was it before treatment?
I have done that before the treatment and just yesterday the took a sample and the result will take sometime so I am not yet sure of the numbers to compare.
c) What are your current haemoglobin and white cell values?
HB is 11.2 and the white cell 3.1

I don't know if this information help, but i would ask the Dr. about procrit, i'm not really sure the Dr. is fully aware of the tx details and the work a rounds that you guys knows.

any further details will really be appreciated.

Thanks to all of you for the replies

[Bill1954]

Shehabi, doctors typically don’t intervene with Procrit (known generically as epoetin alpha) until the patient’s hemoglobin approaches 10 g/dL; at this point, it is introduced to prevent ribavirin dose reduction.

Neupogen (known generically as filgrastim) is generally initiated when the ‘neutrofils absolute’ reaches 400-500; this prevents interferon dose reduction, and keeps the white cells from crashing.

Both these medications are used extensively for cancer chemo; I would think they are available in Bahrain.

Very good luck to you—

Bill

[HCA]

Your HB is not a problem-a good drop means that you have built up good levels of ribavirin in your bloodstream.
10 is comfortable and 8 is uncomfortable with intervention needed at that point.
My HB (on treatment) was recently 5.4!!!!!!!!
The white cells are low, but not so much that you should come off treatment-different doctors will intervene at different levels,but would typically pull you off treatment at 1.9-1.75.
As I said earlier iron tablets are not really relevant.
Ask the doctor about the helper drugs-Bahrain should have all the latest facilities.
The key figure is by how much your viral load has reduced.

[mikesimon]

10 sure wasn't comfortable to me. With an Hemoglobin of 5.4 I would speculate that your ribavirin dose was likely adequate. You betcha!
Mike

[Shehabi]

Thanks guys for your comments and replies
I will see my Dr. next Monday and I will discuss all of this to make sure i'm in the right direction.

best regards to all of you

[alagirl]

10 is comfortable and 8 is uncomfortable with intervention needed at that point.
-------------------------------------------------------
I think this is highly subjective.  People who are used to having a hemaglobin at 15.4 are going to feel very fatigued at 10 - probably even before they get to 10.  Also, people function differently at low hg vallues.  I've had anemia of chronic disease for about twenty years and I still don't feel "comfortable" at 10.  At 8 and under my muscles no longer work.  I cannot even chew.  I try to maintain my hg at about 11.5 now that I am post tx, and during tx, I tried to maintain it as high as I could with procrit and transfusions - never was high enough at that time.

Shehabi - you really want to check your iron and ferritin levels prior to commencing any additive iron therapy.  You don't want to add iron unless you really are deficient in iron.  You do need to talk to your doctor about rescue drugs, like procrit, to see at what point you should begin utilizing them if your blood count continues to drop.  

[nygirl7]

NO ten is not comfortable at all on the way down.  If perhaps you should drop as low as 8 then go back UP to ten it would be ok but on the way down well hells bells it's one of the most uncomfortable thing people have to go through on treatment and one of the main reasons people drop out as they don't know about Procrit.


But ten is about as comfortable as wearing a rubber fat suit that ads about 400 pounds to you and has bells on the head... and you can't breath, walk too far and having ringing in your head when you aren't fainting.

so don't worry about complaining as it's going down most of us at least it would seem completely understand the difficulty. You betcha!

[HCA]

'Comfortable' simply means safe as in 'We are comfortable with the level'.
Intervention is not normally appropriate with HB at 10,just careful monitoring.

[alagirl]

When you use the word comfortable in the context of patient experience, I doubt they will understand the definition to be the same as most patients don't use the word comfortable in a clinical sense.  When you say intervention, are you talking procrit or transfusion?  

Obviously, transfusion isn't appropriate until you hit 8 and under, but if someone is on riba and dropping hgb fast, then it IS appropriate to start looking at procrit at 10 (or even above 10 - as some physicians will drop or stop a patient's riba if they go below 10 hgb) if the patient is are going to continue to take a hemolytic agent.  One can infer that the hemolysis will continue without intervention if there is failure of the hgb to come up on its own - only a steady decline downward instead.  

People with chronic anemia who are on longterm procrit therapy are given a target goal for hgb by their physician and they try to keep their hgb within that range.  It would affect quality of life for someone with chronic anemia to wait, go down to 8, then have to take enough hgb to bounce up, and yoyo back and forth with large swings.  Much easier to keep the level stable at a hgb predetermined by the physician.  Most physicians are going to prefer an upper level not above that delineated by the procrit black box warning.  That target goal may also be different for different patient groups with chronic anemia.  

[nygirl7]

Why would a doctor let you continue onwards with a hemo of 5.4 without major riba reduction at a life threatening level like that? usually around 8 people are transfused and you are much, much lower than that. I've never heard of such doctoring in all of my life. Why risk a heart attack this way?  Aren't you concerned? I would think it was more of a risk than hepatitis by far.

[HCA]

These days I am becoming more persuaded that dose reduction is the first and best strategy.
Research (there are two recent threads here) strongly suggests that dose reduced patients have better SVR rates than those with maintained dosage.
It's the serum levels that count,how saturated the cells are.
I didn't respond to procrit at all during a previous treatment.
I am currently on low dose ribavirin with transfusions every couple of weeks.
I don't have knowledge of how to treat people with pre-existing anemia so can't really comment

[HCA]

The riba had been reduced significantly before the HB reached 5.4.
I have had numerous transfusions during the course of the treatment.
I was being monitored on a weekly basis and also taking Telaprevir which is a further agent for anemia.
I know it doesn't sound like it,but I get excellent quality of care at a major teaching hospital with frequent reviews by the senior consultant.
I would have been more likely to have had a heart attack if I had known that my HB would get so low than I was by the actuality of it getting there.
Needless to say I felt very ill but did not experience palpitations which are apparently the first sign of a crisis.

[alagirl]

Research (there are two recent threads here) strongly suggests that dose reduced patients have better SVR rates than those with maintained dosage.
-------------------------------------------------------------------------------------

The study shows that people who responded to tx with anemia profound enough that their dose HAD to be reduced up to 50% were still very successful in treatment.  The rates of those folks in whom riba seems to be highly effective (demonstrated, they think, by the level of anemia) is better than the svr rate of those in whom the riba does not have as profound an effect.

I think that your statement that the serum levels are the important thing is correct.  Overall, however, the study does make it clear that in general, its important to go with full doses of riba.  So its not that dose reduced patients have better svr than people on full riba, because that isn't quite accurate.  It is true that patients who have been reduced because of their riba related anemia still have better svr rates than patients who do not demonstrate this type of anemia (thus, they do not have to have their dose reduced).  I had transfusions about every ten days while I was on tx, plus two 40k unit shots of procrit every week.  I also had one round of IV gamma globulin.

I'm glad that you were able to find a doctor who would support your tx with the transfusions necessary to continue.  It is sometimes difficult to find physicians who will work with you in that manner.  I was fortunate with my doctors on tx as well.

[alagirl]

p.s. if you have excess iron afterwards and are given the option of chelation or exjade... go with the chelation.  The exjade is awful.

[nygirl7]

Do you live in the States or is this in European numbers?

An old member Mr. Beagle Bailey who had thalassemia pre-existing anemia was allowed to continue at 5 but he had weekly transfusions and only a 24 week treatment - I've never heard of anybody being allowed by their doctor to continue at such a low number. In fact they usually stop treatment higher than that so I'm wondering if perhaps there is a conversion rate going on that I am not catching here?

[HCA]

I am in the U.K,but haemoglobin values are the same-your 10 is my 10 and so on.
Some other biochemical references are different but not HB.

[alagirl]

My doctors actually WERE worried about my heart with my hemaglobin levels.  And the lowest mine got was in the six's.  I was not allowed to exercise (like that would have happened anyway), and I was taken off my adderall (adderrall) and told not to consume caffeine.  Part of the issue, and I don't know if you've had this problem, was that I would become critically low in potassium as my blood count dropped.

[HCA]

Thx your response.
I realise that one maintains the ribavirin dose where possible and that arbitarily reducing it is not a new way of improving SVR rates.
I am quite excited by this shift in perception tho' as there has been a tremendous amount of dogma about maintaining the dosage which could be needlessly demotivating for those who are reduced.
I also suspect that job of ribavirin is pretty much done when the viral load is pushed down to undectable and I have always felt that the drug should be pre-dosed ahead of the interfron.
I think there is still a lot of play in improving treatment protocols.

[JennyPenny]

I'm another one who felt very uncomfortable with a hemoglobin of 10. Procrit helped me a lot.

I'm a little confused about why people on procrit might not SVR as often as those who just have a dose reduction when those people who are dose reduced are getting transfusions. Don't transfusions ultimately do the same thing? Raise the hemoglobin? Can someone explain please.

[jdwithhcv]

I too was uncomfortable with hgb of 10, which is why last night I asked the question, "comfortable, in what sense?"  I thought it was a legitimate and courteous question and so, apparently, do others.  

Hgb of 10 made me very uncomfortable, and by the time it dropped to 7.4 I was hospitalized for transfusion.  The transfusion took care of the crisis and between dose reduction and procrit I got my hgb back up into the low 9s where it remained for 40 weeks.  Hgb of 10 felt much better on the way back up than it did during the decline.

jd

[Marcia2202]

I'm sorry, but that is incorrect. The hgb is not the same. An hgb of 5.4 in SI units equals 8.7 in the old system. A 10 in SI units (Système International) would be 16.1 in US terms

[Marcia2202]

The equation is  SI units divided by 0.6206 = the old units

[virgocharm]

Marcia should i continue to take my procrit as instructed, since i am at 12. I  think that when i do my weekly shots, hemo drops. i figure i am staying at same level. i read somewhere that when taking procrit and it reaches 12, it should be stopped. anyone know about this. i go to doc next week. i will ask her is it safe to stop, since my hemo drops rapidly.

[HCA]

The normal range of haemoglobin for a man is 13.5 to 17.5 g/dl and for a woman is 11.5 to 15.5 g/dl.
My results are delivered in g/dl not molar concentration which is what you may be assuming.
Therefore I am using the same reference range as the Americans.

[Marcia2202]

I thought that you meant that the 2 systems had the same values.

[Marcia2202]

From what I have read on the forum, it should be discontinued, if your hgb is back up at 12. I have no personal experience with Procrit, so I think it is better that someone with the experience replies.

[Marcia2202]

I don't understand though, that you say that an hgb of 10 is comfortable. Mine was hovering just a bit above that all during tx and I was VERY uncomfortable. I would almost faint in the shower etc. I was so weak, I could hardly get out of bed. Of course it was also the effect of the tx, but the low hgb played a role in this too.

From what I have read and also according to my hepatologist here in DK, procrit is administered when one goes below 10. Blood transfusion would already be administered around 8.

[jdwithhcv]

With hgb at 12, I would ask about discontinuing the procrit.  My oncologist told me a few years back that the risk of clots begins to outweigh the benefits at about that point.  

[HCA]

Lots of people have queried the use of the word 'comfortable'.
I meant 'safe' , a level that doctor and patient could be comfortable with.
I didn't mean the feelgood factor of the patient.
In cases of haemolytic,ribavirin induced anemia my doctor and I believe others try to maintain the haemoglobin at around 10 during the course of treatment.
I suffer very badly from ribavirin induced anemia and procrit does not work for me so I know all about the physical discomfort.
As I mentioned in an earlier post I have been as low as 5.4 during current treatment so I have been in some pretty horrible territory.

[Marcia2202]

Oh, I understand.

You must half felt 3/4 dead when your hgb went down that far. It sounds dangerous. I cannot imagine having such a low count. Hope you're feeling better now.

[alagirl]

I'd talk to your doctor.  Typically they upper limit of what they want you to use procrit to achieve is between 11 and 12.

[WriteItDown]

Does anyone have a sense of how common it is, during treatment,  to needeither Procrit or transfusions?

[Bill1954]

My best guess (based on reading in here as well as perusing scholarly studies) is that roughly 30% of patients on HCV treatment will require some sort of intervention due to ribavirin.

Bill

[alagirl]

My impression is that the need to use procrit is fairly common as the majority of people are going to have some level of hemolysis (some of whom will not need procrit).  I think that having hemolysis to the extent that you need transfusions is much more rare.  In fact, I only knew of one other person on this forum who needed one, but in the past few months, I've seen about three other individuals.  Not many considering how many people come through here.  My doctors told me its not that common to have transfusion dependent hemolysis during tx.

More often what I do see from posters is that they don't see the blood loss coming in time when they start tx, and they may end up in the ER getting fluids, etc prior to initiating procrit.

[jdwithhcv]

While it is true that I required transfusion (once) during tx, and procrit throughout, I had pre-existing damage to my bone marrow from previous cycles of chemotherapy, as well as radiation treatment.  I agree with alagirl, transfusion dependent hemolysis is not common.

jd

[WriteItDown]

Thanks to you all for the information.  Looks like my husband is going to start tx soon and naturally I am worried about him. (I am going to feed him the tomato-based "functional food" that Rockerforlife posted about a few days ago.  I actually wrote the guy who did the study and got the recipe. Hope it works!)

[WriteItDown]

I just bumped that thread up in case anyone is interested -- sorry, Shehabi, to highjack your thread!

[Ropeadope]

I have been reading for a bit & I'm confused. I have a chronic lung disease, as well as HCV & when I am in the hopsital & my pulse ox drops below 80, they usually do not let me out, & often intubate. So I am confused, isn't that kinda the same thing? How could anyone with such a low hemoglobin be told that they're doctor is comfortaBle with that, especially on trail? I was under the assumption hemoglobin and oxygen levels are closely related

I am very interested in this topic because my doctor wants me to go on the tele trial, & as I said, I have a lung disease, so I am very concerned about my oxygen levels

[Shehabi]

After reading your discussion guys i am convinced that the Procrit is the way to go, i don't want to have problems that would force me to stop tx.

Thanks all of you for your great support which i really need.