Re: Experience with Injectafer?
Posted: Tue Jul 09, 2019 9:36 am
YAY!
To enhance the quality of life for individuals with RLS/WED and their families.
http://bb.rls.org/
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...stjohnh wrote: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.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?
This information is from page 31 of the consensus recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
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.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.
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).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.
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.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.
<rant>stjohnh wrote: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).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.
Ah OK, 2x750mg.stjohnh wrote: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.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..
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.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
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.the original IV iron preparation (iron dextran) DID have a high risk of anaphylactic shock
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.badnights wrote: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.the original IV iron preparation (iron dextran) DID have a high risk of anaphylactic shock
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.
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.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.
Don't give up yet, can take up to 6-8 weeks.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