Re: IV Iron (& My Q about our Anemic Women here . . .)LONG!!!!!

[Guest guest]

Hi, Emileets:

Over the years, I've read posts of at least a handful of anemic LOL (Ladies

of the List) here who have undergone Intravenous Iron treatment--so you and

others might want to check the UF archives for first-person reports.

I also know of a few other (non-list) friends with different kinds of anemia

who have also been treated with IV Iron.

It is my understanding that IV iron is ONLY considered if the patient's iron

stores are not replenished by oral iron supplementation within 4-6 months. My

recollection is that IV Iron is a once-a-week treatment, over four weeks.

However, you might want to verify this with one of the LOL here.

One reason for this 4-6 month " waiting period " is that IV iron is

time-consuming (you have to travel to the hospital, and the actual

treatment--it's

administered by drip-- usually exceeds an hour-depending on your veins. In one

case

I know of, one treatment took part of the morning and the entire afternoon!!)

Other reasons for IV iron being a LAST resort for iron replenishment is:

a) potential discomfort factor (you may have none at all; but it's possible

you may have an adverse reaction ranging from flu-like symptoms to a life

threatening allergic adverse reaction--i.e., anaphylaxis. As a result, patients

have to be watched carefully-- in the hosptal Recovery area, as I recall. )

It's reaalllllly expensive!!! I remember hearing a coworker talk about the

Medicare bill he receives every month for his anemic mother --and the cost

for a single IV Iron treatment--was truly staggering!!!!!!--well over $1000.

.. can't recall exactly now.....just remember the " punchline " to his IV Iron

story....right under the exorbitant cost of the IV Iron cost... is a charge for

" venipuncture " (i.e., needle insertion at the puncture site for the IV). The

hospital charge for said service?A mere $4.40!!!! What a

bargain!!!!......Medicare's coverage for that venipuncture? $ 3.90. (Sheeeez!

What number cruncher

decides such picayune things???As if that extra 50 cents would just break the

Medicare budget!!)

Anyway, here's MY question about all this.

Simply put: Why can't MORE fibroidal women suffering from Iron Deficiency

Anemia-- reap the benefits of IV Iron therapy?

Months ago, I believe it was our own PAPE (Patient Advocate Par Excellence),

Marsha Weaver who raised the legitimate question about why gyns/hems NEVER

prescribed " Procrit " for Iron Deficiency. A good question, but the

answer has nothing to do with physician indifference. It's just NOT an

effective treatment when *iron deficiency* is the cause of the anemia.

But now . . I'm thinking aloud here, much like Marsha did.......raising the

question of why IV Iron isn't prescribed MORE OFTEN to women with fibroids

with intractable anemia?

Even given the risks of anaphylaxis (which, while an undesirable outcome, is

not THAT frequent--and I think can be reversed with steroids--unlike some of

Lupron's lingering devastating effects)

Why weren't women like Ku and e, who suffered through Lupron with such

dismally UNDERwhelming success for soooooo long.....offered IV Iron as a

therapy??? What about Sonja, and GG, Pat, and others, who have had anemia

for

YEARS???

Why don't doctors have a " game plan " --i.e, set a target hematocrit for the

patient, and if her counts fall short of the target number, AFTER a 4-6 month

period of oral iron supplementation---why not, at least *consider* and discuss

IV Iron?

Granted, there are potential problems, and it may not always work--but when

it does, I KNOW it can be life-changing.

My own experience with my own hem-onc doctor (for a non-anemic condition) is

that he was just as gung-ho for hysterectomy -- being the ONLY solution for

fibroids-- as every one of my 127 previous ex-gynos!!!! I'm sure this has much

to do with his own orientation and experience, treating so many women with

gynecological cancers.

Let me tell 'ya--the purple veins in my hem-onc doctor's temples reallly

bulged out and he nearly blew a gasket, in front of me when I told him I was

planning to have a myomectomy. " Whhhhhhhat?!?!? Don't you realize how

*DANGEROUS*

pelvic surgery is for you---you could bleed to death! Someone like you could

throw a clot, and die!! You really NEED to get a hysterectomy! "

I reflected oh.....about half a second and then blurted out: " Oh,

Doctor--what balderdash! What poppycock!

What idiocy!---and did I mention, utter nonsense! Isn't a hysterectomy PELVIC

SURGERY, Doctor??? "

[OK, I admit, ladies--I embellished the above answer, to add dramatic effect

to my story! But, let the record reflect--that I DID challenge my doctor's

assertion!!]

To his credit, he immediately realized the error of his thinking, which, as I

mentioned, clearly was strongly influenced by his many years of working with

cancer patients. None of whom have the option of preserving their uteri.

But-given this natural pro-hysterectomy " bias " of hematologists (who are

oncologists, as well) coupled with the well-known gyno bias toward

hysterectomy.....could it be that these physicians don't prescribe IV iron,

simply because

they are expecting/hoping that the Kus and es of the world will simply

give up their " frivolous " wish to hold on to their uteri, come to their

ice-crunching senses, and in utter resignation, breathlessly, come crawling on

their

hands and knees and BEG for the expedient, expeditious " solution " to their

anemia---hysterectomy.

Clearly, IV Iron is NOT " the cure " --but why not consider it as a means to buy

time, to build iron stores, while the patient can consider ALL fibroid

treatment options?

Does the expense of Iron IV therapy factor into the decision making and do

insurance companies discourage doctor from prescribing it more routinely????????

Just wonderin'.......This is only MY impression. I'd be interested in other

LOL input and feedback/experiences on IV Iron for Iron Deficiency Anemia.

I M Curious,

- Roma

In a message dated 3/8/2004 1:52:19 PM Eastern Standard Time,

emileets@... writes:

Has anyone here had iron by IV to treat severe anemia with low

ferritin (iron) reserves?

I had iron injections many years ago, and they were not pleasant.

However, I'm told that there have been many improvements in the way

iron is given now, via IV.

If anyone has had the IV iron, what was your experience? Pain while

the iron was being given? Bruising (not from insertion of the IV

needle, but from the iron itself)? How many treatments did you

require?

Thanks for your input.

[Guest guest]

" And what choices do we lucky souls have " Jenine writes

in message 33177, Fri. 4/11/03 that " procrit really didn't

do too much-hemo raised from 8 to 10 in 3 and 1/2 weeks.

She went on to have a successful myomectomy-a 14X10X7cm 190

grams (1/2pound) grapefruit plus size fibroid, initially

thought intramural but according to Dr. Advincula also

protruded into the uterine cavity (submucosal) as well

as out into the serosa (subserosal).

Jenine wrote in an earlier post 27741 Has anyone ever died?

Carla Dionne responded that foreign medical journals, pathologists,

cardiologists, and Interventional radiologists had

discussed the issue--but " everyone but gynecologists "

> But now . . I'm thinking aloud here, much like Marsha

did.......raising the

> question of why IV Iron isn't prescribed MORE OFTEN to women with

fibroids

> with intractable anemia?

Perhaps a letter to the President of ACOG, cc's to Medical

Schools and cc with definitely a plea to the media for coverage

of the ER admitting/transfusion stats for hemmorrhage

related to uterine leiomyoma? At least we could find out

the male mentality regarding the menstrual cycle---oh boy,

if only men could bleed monthly, too...what a revelation.....

> Why don't doctors have a " game plan " --i.e, set a target hematocrit

>for the patient, and if her counts fall short of the target number,

>AFTER a 4-6 month period of oral iron supplementation---why not, at

>least *consider* and discuss IV Iron?

Yes, why is this? Great idea. Inquiring media might want to know?

> Clearly, IV Iron is NOT " the cure " --but why not consider it as a

means to buy

> time, to build iron stores, while the patient can consider ALL

fibroid

> treatment options?

Really good points, as always Roma...

btw, going back through the archives is a real TRIP....

You were so very helpful to Glitter...oh, I hope

she's enjoying herself, age 34+ by now and she's got the

world by the tail.

Marsh