Experience with Injectafer?

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.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
ViewsAskew
Moderator
Posts: 15739
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Experience with Injectafer?

Postby ViewsAskew » Tue Jul 09, 2019 9:36 am

YAY!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Frunobulax
Posts: 170
Joined: Mon Jun 02, 2014 7:41 pm

Re: Experience with Injectafer?

Postby Frunobulax » Tue Jul 09, 2019 12:47 pm

stjohnh wrote:
Frunobulax wrote:For us not located in the US, what is the ingredient of Injectafer and what's the dose? How many IVs did you get?


The generic name of Injectafer (the ingredient) is ferric carboxymaltose. The brand name outside of USA is Ferinject and the dose is 1000mg IV over 7.5 minutes, given one time.

This information is from page 31 of the consensus recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub


Thanks Holland, you're a life saver. My brain must have been foggy yesterday for not finding this info, as I thought I had read that paper fully. My only concern is that the recommended dose is Injectafer "2x1500mg in the US, 1x 1000mg outside the US" if I read it correctly. Huh? Apparently we need only 1/3rd of the iron? Ah well...

Fun fact: My RLS specialist who works in the neurologic center of one of the biggest university hospitals in Europe has no way of administering the injections, even though I convinced him (with difficulty) that we should try iron IVs. Apparently the IBD hypothesis has little traction over here. :(
But I found a GP who will give me the injections, if my specialist writes a recommendation. So I guess it will be a few more weeks but hopefully I'll be able to report progress (or not) in 3-4 months.

stjohnh
Posts: 910
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Experience with Injectafer?

Postby stjohnh » Tue Jul 09, 2019 1:19 pm

Frunobulax wrote:...My only concern is that the recommended dose is Injectafer "2x1500mg in the US, 1x 1000mg outside the US" if I read it correctly. Huh? Apparently we need only 1/3rd of the iron? Ah well...

Fun fact: My RLS specialist who works in the neurologic center of one of the biggest university hospitals in Europe has no way of administering the injections, even though I convinced him (with difficulty) that we should try iron IVs. Apparently the IBD hypothesis has little traction over here. :(
But I found a GP who will give me the injections, if my specialist writes a recommendation. So I guess it will be a few more weeks but hopefully I'll be able to report progress (or not) in 3-4 months.


No, the USA dose is 750mg each for a total of 1500mg. I don't know why the USA dose is higher. Most of the studies quoted used 1000mg. The med can be given by any nurse or doctor that will stick a needle in your vein and slowly squirt the contents into it. No special equipment needed, although in the USA it is usually given diluted over 30 min. Perhaps because that is what doctors and nurses are used to.
Blessings,
Holland

stjohnh
Posts: 910
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Experience with Injectafer?

Postby stjohnh » Tue Jul 09, 2019 1:27 pm

Frunobulax wrote:
Fun fact: My RLS specialist who works in the neurologic center of one of the biggest university hospitals in Europe has no way of administering the injections, even though I convinced him (with difficulty) that we should try iron IVs. Apparently the IBD hypothesis has little traction over here. :(


I don't know why European docs aren't on board with BID. Much of the research has been done in Europe. The basics of the BID theory are: 1) Autopsy studies of brains of people with RLS have abnormally low iron. 2) Functional imaging (MRI/CT etc) with iron tagging contrast show low brain iron in living people with RLS. 3) Animal studies of iron deficient mice, rats, etc. show RLS like symptoms 4) People with RLS get better when given IV Iron. 5) Iron deficiency is known to affect the Adenosine->dopamine/glutamatergic pathways that seem to be the primary path to RLS symptoms (urge to move and sleep disruption).

Many US docs don't accept it, but I think it is primarily a lack of education. Most US docs think Iron is only needed to make red blood cells.
Blessings,
Holland

stjohnh
Posts: 910
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Experience with Injectafer?

Postby stjohnh » Tue Jul 09, 2019 1:35 pm

badnights wrote:I should have emailed Dr B first. Why did I even bother with Johns Hopkins! Dr B has answered me positively; he is liberal with initial ferritin levels so I don't have to be under 100. I am calling his office tomorrow to book an appointment. :D


While Dr B's main office is in southern California, he is also on the Stanford staff and sees patients sometimes in Redwood City (about 5 miles from Stanford and about 25 miles south of San Francisco in northern California). So you may have a choice of locations if you want. He is the second doctor in the list if you click the link.
https://stanfordhealthcare.org/content/shc/en/search-results.doctors.html/&sp_clinics%7C/medical-clinics/sleep-medicine-center.html%7CSleep%20Medicine%20Center#x1=sp_spec_care_phy&q1=true
Blessings,
Holland

Frunobulax
Posts: 170
Joined: Mon Jun 02, 2014 7:41 pm

Re: Experience with Injectafer?

Postby Frunobulax » Tue Jul 09, 2019 6:06 pm

stjohnh wrote:
Frunobulax wrote:
Fun fact: My RLS specialist who works in the neurologic center of one of the biggest university hospitals in Europe has no way of administering the injections, even though I convinced him (with difficulty) that we should try iron IVs. Apparently the IBD hypothesis has little traction over here. :(


I don't know why European docs aren't on board with BID. Much of the research has been done in Europe. The basics of the BID theory are: 1) Autopsy studies of brains of people with RLS have abnormally low iron. 2) Functional imaging (MRI/CT etc) with iron tagging contrast show low brain iron in living people with RLS. 3) Animal studies of iron deficient mice, rats, etc. show RLS like symptoms 4) People with RLS get better when given IV Iron. 5) Iron deficiency is known to affect the Adenosine->dopamine/glutamatergic pathways that seem to be the primary path to RLS symptoms (urge to move and sleep disruption).


<rant>
They shrug all arguments off. I heard "nothing has changed since the 90s" even though I was talking in length about all the new developments. My doctor claimed the attention to iron was only due to the fact that opioids are driven out in the US and doctors have to look towards other treatments, but "we in Germany have better ways to treat our patients". (I'm pretty sure that very few RLS patients here get opioids. They are officially licensed to be used for RLS treatment since 2 or 3 years, and most neurologists have yet to realize that.)
The sad fact is: Most doctors here react aversely against anything that looks like alternative medicine, i.e. treatment with vitamins, minerals and whatever. And most doctors (over here) stubbornly refuse to even think about alternative treatments. I have yet to meet a single neurologist in Germany who is knowledgable about vitamin B12, even though B12 deficiency was known to cause RLS when RLS was first described in old (english and german) publications, some 80 years ago IIRC. And I have met a LOT of neurologists over the years.

Whenever I want to discuss treatments other than expensive drugs, most doctors will shut me out immediately and go on autopilot on what I believe to be a "placebo effect posture". (You know, let the patient talk but try to get him to shut up quickly in order to save time, but ignore what he says. You don't want to reveal that it's only a placebo.)

I sometimes have a hard time keeping calm in those situations. But I don't care, I became my own doctor a couple of years ago, and will just go to a different doctor if I don't get what I want. Not exactly an ideal situation, but what else can I do if doctors refuse to believe me if I tell them what helps me and what not?
</rant>

Anyway, I managed to convince one doctor (not a neurologist though) that iron IVs are a good thing for RLS. I hope to some day convince a second one :)

Frunobulax
Posts: 170
Joined: Mon Jun 02, 2014 7:41 pm

Re: Experience with Injectafer?

Postby Frunobulax » Tue Jul 09, 2019 6:18 pm

stjohnh wrote:
Frunobulax wrote:...My only concern is that the recommended dose is Injectafer "2x1500mg in the US, 1x 1000mg outside the US" if I read it correctly. Huh? Apparently we need only 1/3rd of the iron? Ah well...

Fun fact: My RLS specialist who works in the neurologic center of one of the biggest university hospitals in Europe has no way of administering the injections, even though I convinced him (with difficulty) that we should try iron IVs..


No, the USA dose is 750mg each for a total of 1500mg. I don't know why the USA dose is higher. Most of the studies quoted used 1000mg. The med can be given by any nurse or doctor that will stick a needle in your vein and slowly squirt the contents into it. No special equipment needed, although in the USA it is usually given diluted over 30 min. Perhaps because that is what doctors and nurses are used to.


Ah OK, 2x750mg.

The problem is that most doctors are scared to do anything that is off label over here. Liability is a bit different here: It is almost impossible to sue a doctor if he uses officially approved meds, even if he made obvious mistakes. But anybody using non-approved meds could in theory be sued by patients or insurance companies if something goes wrong. So the problem is: Doctors have no experience with IV injections/infusions, therefore they are anxious that something could happen like an anaphylactic shock, so they don't give the infusions, hence they never gain experience.

Even in my CFS clinic where patients get IVs with vitamins every day, doctors where hesitant to give me iron because iron is something that they used very rarely. Turns out they gave my three IVs with 40mg of iron glucanate each instead of the suggested 8x100mg.

If I could get my hands on the stuff I would administer it myself :-)

stjohnh
Posts: 910
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Experience with Injectafer?

Postby stjohnh » Tue Jul 09, 2019 7:50 pm

Frunobulax wrote:...
The problem is that most doctors are scared to do anything that is off label over here. Liability is a bit different here: It is almost impossible to sue a doctor if he uses officially approved meds, even if he made obvious mistakes. But anybody using non-approved meds could in theory be sued by patients or insurance companies if something goes wrong. So the problem is: Doctors have no experience with IV injections/infusions, therefore they are anxious that something could happen like an anaphylactic shock, so they don't give the infusions, hence they never gain experience.

Even in my CFS clinic where patients get IVs with vitamins every day, doctors where hesitant to give me iron because iron is something that they used very rarely. Turns out they gave my three IVs with 40mg of iron glucanate each instead of the suggested 8x100mg.

If I could get my hands on the stuff I would administer it myself :-)


That is actually similar to the USA situation. Part of the difficulty is that the original IV iron preparation (iron dextran) DID have a high risk of anaphylactic shock, and most doctors are not aware the newer preparations, and especially Injectafer, are extremely easy and safe to administer. That drug is not even available in the US any more.
Blessings,
Holland

badnights
Moderator
Posts: 5289
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Experience with Injectafer?

Postby badnights » Tue Jul 09, 2019 11:13 pm

the original IV iron preparation (iron dextran) DID have a high risk of anaphylactic shock
Low molecular weight iron dextran is still available (INFeD). It is high molecular weight iron dextran that causes anaphylactic shock and is no longer manufactured. There were cases in which HMW was substituted for LMW iron dextran without physicians' knowledge because it was coded by pharmacies as an equivalent product, resulting in at least one death.
My trivia for the day.
Interesting all that happened well over 10 years ago - more like 15. It takes a long time for information to trickle down.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
Moderator
Posts: 15739
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Experience with Injectafer?

Postby ViewsAskew » Thu Jul 11, 2019 8:18 pm

badnights wrote:
the original IV iron preparation (iron dextran) DID have a high risk of anaphylactic shock
Low molecular weight iron dextran is still available (INFeD). It is high molecular weight iron dextran that causes anaphylactic shock and is no longer manufactured. There were cases in which HMW was substituted for LMW iron dextran without physicians' knowledge because it was coded by pharmacies as an equivalent product, resulting in at least one death.
My trivia for the day.
Interesting all that happened well over 10 years ago - more like 15. It takes a long time for information to trickle down.


I saw a physician 3-4 years ago (it was the final straw, so to speak, that contributed to our move to So Cal) who assured me it was horrible and terrible things would happen to me. She was not aware at ALL of the difference. And, she went on such a rampage about it that she couldn't hear anything I said.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Frunobulax
Posts: 170
Joined: Mon Jun 02, 2014 7:41 pm

Re: Experience with Injectafer?

Postby Frunobulax » Fri Jul 12, 2019 12:05 pm

Curious, one of you reported that Injectafer is $1500 to $2000? I paid about $450 for 1000mg FerInject (same drug, different brand) in Germany, unfortunately healthcare providers over here do not pay for it. They are happy to pay a variety of much more expensive drugs including Oxycodone, ah well...

Got my IV today, will report if I can cut down my Oxycodone.

stjohnh
Posts: 910
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Experience with Injectafer?

Postby stjohnh » Fri Jul 12, 2019 1:29 pm

Frunobulax wrote:Curious, one of you reported that Injectafer is $1500 to $2000? I paid about $450 for 1000mg FerInject (same drug, different brand) in Germany, unfortunately healthcare providers over here do not pay for it. They are happy to pay a variety of much more expensive drugs including Oxycodone, ah well...

Got my IV today, will report if I can cut down my Oxycodone.


Glad you got the iron. Nearly all drugs cost way more in the USA than all other countries, so it is not surprising yours was much less. Our healthcare system is fairly responsive and we have more choices than folks in many other countries, but at a very high cost. Our healthcare costs are at least double the costs in other industrialized countries, as a % of GDP.

I recently started on a non-approved treatment for Fuch's endothelial dystrophy, a common genetic eye problem that is the most common reason that corneal transplants are performed. The medicine, Rhopressa (netarsudil) is a recently released Rho Kinase inhibitor ("ROCK inhibitor"). Costs $300 US for 50 drop tiny (2.5ml) bottle, over $5 per drop.
Blessings,
Holland

Frunobulax
Posts: 170
Joined: Mon Jun 02, 2014 7:41 pm

Re: Experience with Injectafer?

Postby Frunobulax » Wed Aug 21, 2019 7:46 pm

So, a month after my Injectafer IV. Unfortunately I can report no significant improvement, I was on 25mg oxycodone before (10 in the morning and 15 in the evening) and tried to reduce that to 20mg (10/10) twice, once a week after the IV and once more last week, but it seems the RLS breaks through in half of the nights.

Too bad :(

stjohnh
Posts: 910
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Experience with Injectafer?

Postby stjohnh » Wed Aug 21, 2019 8:29 pm

Frunobulax wrote:So, a month after my Injectafer IV. Unfortunately I can report no significant improvement, I was on 25mg oxycodone before (10 in the morning and 15 in the evening) and tried to reduce that to 20mg (10/10) twice, once a week after the IV and once more last week, but it seems the RLS breaks through in half of the nights.

Too bad :(


Don't give up yet, can take up to 6-8 weeks.
Blessings,
Holland

ViewsAskew
Moderator
Posts: 15739
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Experience with Injectafer?

Postby ViewsAskew » Thu Aug 22, 2019 5:34 am

I swear that the second time it took 11 weeks. At 8 weeks, I gave up and was sure it hadn't helped. I don't even remember how I figured out it had helped - likely late taking meds one day and didn't have symptoms or something.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


Return to “Prescription Medications”

Who is online

Users browsing this forum: No registered users and 2 guests