Infusion #3

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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ViewsAskew
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Infusion #3

Postby ViewsAskew » Tue Aug 20, 2019 8:36 am

Backstory: Had in infusion and it helped for a short time, had a second infusion a couple years later and it reduced my meds by about 50%, and in the last year, I've been back at my all time high levels of meds. Dr B said to go for an infusion, but I was taking a new anti depressant and wanted to make sure it wasn't the cause; it wasn't. So, he sent me to the hematologist's office.

In So Cal where I am, the group he sends me to is HUGE. They have 20 or more offices. When I had the first infusion, it was a company that is now out of business. The second one was with this large medical group and my doc was in San Pedro, where I lived. I had to have the hematologist call Dr. B during my appt (whipped out my phone in the exam room and handed it to him, lol - the office staff at Dr. Bs office got him out of an exam room - he rocks). Now, though, I live in the town next door, Long Beach.

So, off to yet another hematologist. But, this time my ferritin is in the 200s, not 30. Th3e doc I see is young - maybe early to mid thirties. He seems relatively nice, but a bit cocky. First appt I explained it all, he listened, asked lots of questions, eventually asked if I was in the medical field, and said he would think about it. He tested my ferritin and did agree to see if the insurance would cover it.

I left feeling a bit uncertain. My ferritin is high - I think artificially so because of autoimmune issues going on. But, it is what it is. I emailed his office with the IRLSSG standards regarding infusions, but didn't hear back. My appt was today.

In the waiting room, I loaded the Elsevier article from 2018 regarding the infusion standards on my phone and noted the relevant sections. When he came in and opened with my ferritin results, I said I'd emailed him info and wasn't sure if he received it. He said no, so I gave him the phone and told him what section to go to (I left it open to the header so he could see it was a reputable piece. He scrolled through quickly, read a bit here and there, found the section and said, "Well you are under 300, the other values are way under the limit, and we can do this. Except the insurance will not cover the Injectifer."

Great! He is willing. Damn, bad insurance. While there is more evidence for Injectifer, the Cho study used LMW iron dextran with good results, so I don't think I will try to appeal the decision.

Mostly? Am very pleased.
Ann - Take what you need, leave the rest

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stjohnh
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Re: Infusion #3

Postby stjohnh » Tue Aug 20, 2019 2:13 pm

A reasonable decision, however, if at all possible, I would go with Injectafer and pay out of my pocket. Shorter course (2 infusions, one week apart), better clinical evidence supporting its use. If you have to pay $2000 for one year relief, that is $167/month. Not cheap, but not bad compared to what many people pay for their RLS meds.
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Re: Infusion #3

Postby Polar Bear » Tue Aug 20, 2019 8:05 pm

At $167 per month for Injectafer...... Approx $5.50 per day. The cost of a cup of really nice coffee.... Well maybe two cups :)

LMW Iron Dextran - The insurance will cover this?

Could go for the LMW knowing there is an alternative in the future of LMW isn't up to scratch.

Trying the one first that isn't costing you.
Betty
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stjohnh
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Re: Infusion #3

Postby stjohnh » Tue Aug 20, 2019 8:25 pm

Polar Bear wrote:At $167 per month for Injectafer...... Approx $5.50 per day. The cost of a cup of really nice coffee.... Well maybe two cups :)

LMW Iron Dextran - The insurance will cover this?

Trying the one first that isn't costing you.


Ordinarily, none of the IV Iron preparations will be covered, though some insurance companies might let it slip by. AFAIK, the only indication approved for any of them is Iron Deficiency Anemia, which you don't have. OTOH, LMW Dextran is likely much less expensive than Injectafer.
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Holland

ViewsAskew
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Re: Infusion #3

Postby ViewsAskew » Tue Aug 20, 2019 9:24 pm

Oddly, they are covering the LMW iron dextran. The first time I paid out of pocket, it was only $800. At the time, a pharmacy was sending nurses to your home to do it. They stopped doing so; when it came for the second, hubby and I made the decision to move and for me to get insurance here. That time, the insurance paid - I had a deductible, they paid the rest. I think the total was $1800 for two infusions.

I will find out total cost this time for each. I know a LOT of people here couldn't pay the out of pocket cost - some of us don't have anything extra. It infuriates me that any of us should be in this position...but that is not a post for here.
Ann - Take what you need, leave the rest



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debbluebird
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Re: Infusion #3

Postby debbluebird » Wed Aug 21, 2019 6:31 am

If it's not one thing it's another.

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SquirmingSusan
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Re: Infusion #3

Postby SquirmingSusan » Sat Aug 31, 2019 5:19 am

I'll be starting a series of 3 iron infusions next Wednesday. I'm assuming the doctor ordered Injectafer, since I told him I had a great experience with it last time around, except for the cost. It was several thousand dollars, and I'm still making monthly payments. And, our $4000 deductible resets on Monday.

As the iron levels get replenished, my wallet is going to start to bleed. Fortunately this time we have money in our HSA account to pay for the high deductible.

I wish we could get cost estimates from different providers, and make the choice ourselves or where to get the infusions.
Susan

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Re: Infusion #3

Postby stjohnh » Sat Aug 31, 2019 2:06 pm

SquirmingSusan wrote:I'll be starting a series of 3 iron infusions next Wednesday. I'm assuming the doctor ordered Injectafer, since I told him I had a great experience with it last time around, except for the cost. It was several thousand dollars, and I'm still making monthly payments. And, our $4000 deductible resets on Monday....


When you go for your first infusion of the series, be sure to ask the nurse exactly what the label on the IV bag says, both name of med and dose (# of mg.). The IRLSSG recommendations for Injectafer in the USA is 2 doses, 1 week apart, 750mg each. None of the preparations of IV Iron are for 3 doses, so your doc is using a different dosing schedule than the IRLSSG recommendations for some reason.

SquirmingSusan wrote:I wish we could get cost estimates from different providers, and make the choice ourselves or where to get the infusions.

Sigh, another of the serious problems with our health care system, even if you might be able to pay yourself, it is nearly impossible to get quotes for things like this.
Blessings,
Holland

ViewsAskew
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Re: Infusion #3

Postby ViewsAskew » Tue Sep 03, 2019 3:50 pm

Glad you are getting them, Susan. They have helped you in the past, so hoping for the same.
Ann - Take what you need, leave the rest



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Re: Infusion #3

Postby SquirmingSusan » Wed Sep 04, 2019 10:32 pm

When you go for your first infusion of the series, be sure to ask the nurse exactly what the label on the IV bag says, both name of med and dose (# of mg.).


I got ferrlecit. The nurses had no idea why; they said the most common one they give is Venofer. One down, 2 to go!
Susan

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Re: Infusion #3

Postby badnights » Thu Sep 05, 2019 3:26 am

This topic has been moved to Prescription Meds. A link to it (also called a shadow topic) remains in place under Non-prescription.
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ViewsAskew
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Re: Infusion #3

Postby ViewsAskew » Fri Sep 06, 2019 11:13 pm

My first is scheduled for next Tuesday.
Ann - Take what you need, leave the rest



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Re: Infusion #3

Postby SquirmingSusan » Sat Sep 07, 2019 2:51 am

ViewsAskew wrote:My first is scheduled for next Tuesday.


Hurray!

I wonder if Beth is getting some soon...

My doctor has me getting them once a month for 3 months, and then getting labwork. Strange scheduling, but sitting in the infusion center once a month is better than every week.
Susan

ViewsAskew
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Re: Infusion #3

Postby ViewsAskew » Sat Sep 07, 2019 6:18 pm

SquirmingSusan wrote:
ViewsAskew wrote:My first is scheduled for next Tuesday.


Hurray!

I wonder if Beth is getting some soon...

My doctor has me getting them once a month for 3 months, and then getting labwork. Strange scheduling, but sitting in the infusion center once a month is better than every week.


Beth is still waiting, I think. I talked to her yesterday - as of 4 PM, I don't think Dr. B had found an office that would take her immediately. Will talk to her Monday, I hope, and see.
Ann - Take what you need, leave the rest



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Re: Infusion #3

Postby redshoes » Wed Sep 11, 2019 2:45 am

redshoes here.
After the Neupro 4 mg gave me rashes, my neurologist put me on .5mg mirapex+gabapentin AND referred me to hematologist.

Latest labs showed my ferritin at 69 (up from 40-something after 6 months of oral iron). So hematologist agreed to order IV iron, 2 infusions, a week apart. Had the first one yesterday. Thanks to the advice upthread, I made sure to ask what iron formulation they would use, and was told they use Feraheme/ferumoxytol, 510 mg each infusion x 2. This is a slow release formulation. Hematologist said would it be the same as injectafer for my purposes.

Unfortunately, there is inadequate evidence of ferumoxytol being useful for RLS, according to the Elsevier/Allen et al. paper on IV iron treatments. There were no studies done on it. However, because it is a slow release formulation, the authors concluded it is possibly effective, either in one dose or two divided doses.

Due to my total lack of medical background, I have only the vaguest idea why slow release iron products will increase the amount of iron that can be taken up by the body during the infusion process, or why slow-release is safer than the faster release formulations.

I’m just grateful that I had the paper with me, both for the neurologist and the hematologist, so I could point to the chart and ask which of the listed products I would be getting.

And there is still no guarantee at all that IV treatment will work in my case. But since I have been taking very high levels of dopamine agonists since 2006, IV iron is definitely worth trying. Thanks everybody for the invaluable posts and links here. Best of luck to all of us seeking relief for this terrible condition.


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