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.
Polar Bear
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Re: Experience with Injectafer?

Postby Polar Bear » Sun May 05, 2019 5:55 pm

Holland, what a wonderful post. Gives such hope to anyone considering iron infusions.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

srgraves01
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Re: Experience with Injectafer?

Postby srgraves01 » Mon May 06, 2019 3:43 pm

Glad to hear that it has helped so much. Hope you can overcome the hiccup. Even if you had to keep at a low level of kratom, I think this could be considered an excellent result.

Steve

stjohnh
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Re: Experience with Injectafer?

Postby stjohnh » Wed Jun 19, 2019 4:03 pm

Well, the wonderful result is starting to fade (as expected). For the last week I have been having mild urge to move symptoms nearly every afternoon. Additionally my sleep has been more erratic for the last 2-3 weeks. Still mild RLS, but distinctly worse than previously. I finished my second Injectafer infusion on Dec 14, 2018, and about 3-4 weeks later I was at least 90% better. So I have had about 5 1/2 months of nearly no RLS symptoms and taking no RLS meds. This is a good result and generally, people who have had a good result from initial IV Iron infusions have longer lasting results from subsequent infusions.

To get another infusion I need to check my iron status to be sure I don't have too much iron still in my system. This is a blood test (ferritin, iron level, and transferrin level), and if those are within acceptable parameters, call the hematologist and arrange for another Injectafer series (two infusions, week apart). I had my blood drawn earlier today. My ferritin was over 700 about 8 weeks after the second infusion.

An aside, I have esophageal spasm that had improved after my Injectafer treatment, and it seems to be worsening again, I am getting more convinced that Iron affects those symptoms as well. It is unknown why esophageal spasm exists and if the problem is caused by esophageal muscles, nerves leading to the muscles, or brain sending inappropriate signals to the muscles.
Blessings,
Holland

stjohnh
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Re: Experience with Injectafer?

Postby stjohnh » Thu Jun 20, 2019 1:02 pm

Got my iron tests back: Ferritin=260, TSat%=40%. IRLSSG algorithm says repeat Iron Infusion OK if Ferritin is <300 and TSat% is < 45%, so I am good to go. My Ferritin 8 weeks after initial infusion was 760. I have an appointment with the hematologist tomorrow to discuss getting my second set of Injectafer infusions. I'm happy I was able to get hematology appt promptly, I was afraid it would take a month or two.
Blessings,
Holland

badnights
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Re: Experience with Injectafer?

Postby badnights » Fri Jun 28, 2019 5:38 am

What were your numbers (ferritin and transferrin sat'n) before you got your first infusion, do you remember?
Where are you getting this done? Maybe I should go see your doctor lol
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

stjohnh
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Re: Experience with Injectafer?

Postby stjohnh » Fri Jun 28, 2019 2:44 pm

badnights wrote:What were your numbers (ferritin and transferrin sat'n) before you got your first infusion, do you remember?
Where are you getting this done? Maybe I should go see your doctor lol


Beth, my Ferritin was 90 and TSat% was 27 prior to my first Injectafer (IV iron) infusion. My ferritin had been as low as 28 in 2013. In 2016 I started oral iron, and after a long time managed to get it to 90 with oral iron+Vit C. Took about a year for each 10 point increase in ferritin. If your ferritin is over 100 it will likely be near impossible to get IV Iron unless from one of the RLS Quality Care Center doctors. 100 is the cutoff in the IRLSSG Consensus paper on initial iron treatment in RLS. Ferritin must be less than 300 for repeat IV Iron in patients with an initial good result. My current ferritin is 260, I have my repeat IV iron infusion scheduled for this coming Monday.

Neither my GP nor the hematologist are particularly knowledgable about RLS, but both are willing to listen and consider new-to-them ideas. And both know a LOT more about RLS after my educating them. I got the dipyridamole from the same GP, so she is very open to reasonable suggestions. I have no idea about how she feels about prescribing opioids for RLS however. Both now have had one patient (me) with excellent results from Injectafer, so I think they would be willing to consider seeing you for this if you are serious. I live near Stanford, an RLS Quality Care center, so if you wanted to see a Stanford doctor with lots of RLS experience you could also do that. That is what I was planning to do if I couldn't get an OK from my GP for Injectafer.
Blessings,
Holland

ViewsAskew
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Re: Experience with Injectafer?

Postby ViewsAskew » Fri Jun 28, 2019 8:24 pm

To add to what Holland said, the hematologist I saw was not at ALL knowledgeable and was reluctant. But, I asked is he would talk to my doc, and he said yes. called Dr. B at his office immediately from my cell phone. His staff called him over and I handed the phone to the hematologist. They talked for five minutes or so. When the call was over, he completely did a 180 and was ready to see what happened.
Ann - Take what you need, leave the rest

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Oozz
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Re: Experience with Injectafer?

Postby Oozz » Sat Jun 29, 2019 11:38 pm

I am also surprised that they are willing to to give you IV iron at such high ferritin levels. What guidelines are you referring to?

I brought it up with my current doctor, well renown RLS doctor who I trust very much, and was told that I do not meet the criteria because I was over 100. Looking at my results, my iron saturation is 35% and ferritin 254.

What are the risks of getting an iv iron (injextafar specifically) at too high a level? You got as high as 700 and didn’t see any issues. I’m wondering at what level there is an actual danger.

stjohnh
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Re: Experience with Injectafer?

Postby stjohnh » Sat Jun 29, 2019 11:53 pm

Oozz wrote:I am also surprised that they are willing to to give you IV iron at such high ferritin levels. What guidelines are you referring to?

I brought it up with my current doctor, well renown RLS doctor who I trust very much, and was told that I do not meet the criteria because I was over 100. Looking at my results, my iron saturation is 35% and ferritin 254.

What are the risks of getting an iv iron (injextafar specifically) at too high a level? You got as high as 700 and didn’t see any issues. I’m wondering at what level there is an actual danger.


Here is a link to the recommendations:
https://www.sciencedirect.com/science/article/pii/S1389945717315599?via%3Dihub

The recommendations are that for the INITIAL infusion, the ferritin should be below 100. For SUBSEQUENT infusions the ferritin can be up to 300.

In actual fact, it is almost certain that anybody can safely get IV Iron infusions with ferritins up to 300 and possibly higher. The problem is, there isn't enough clinical evidence for the Study Group specialists to make that statement in a paper that is supposed to represent the best scientific EVIDENCE (not theory) available. The underlying problem is that we don't really have good tests to tell us if the body stores of iron are too high or not. The ferritin is among the best tests and it is not very good at that, and not good at all for determining BRAIN iron.

The risk from too much iron accumulating over a long time (as opposed to a child accidentally swallowing a bunch of iron pills that look somewhat like M&Ms) is hemochromatosis. That is deadly iron accumulation in the body, affecting the liver and heart mostly. Those people usually have ferritin levels over 1000, all the time.

The 700 ferritin was 8 weeks after my infusion, and does NOT represent my body stores of iron. It represents the residual effects of the slow metabolism of Injectafer (it releases the iron slowly into the bloodstream, part of why it works better than other IV Iron preparations). This is confirmed by my most recent ferritin of 260, showing the iron from the Injectafer equilibrating with my body iron stores.
Blessings,
Holland

Stainless
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Re: Experience with Injectafer?

Postby Stainless » Wed Jul 03, 2019 1:50 pm

Stjohn, what exactly is Injectafer? Is that a name brand of the technique? Is it an IV drip or something else? I think you said if your insurance did not cover the procedure it would cost about $2K. Was that for the series of shots, basically a year's dose?

I read the study and I'm thinking of bringing this up with my doctor and neurologist but have little hope of them supporting it. Everything seems to work on me to reduce or eliminate RLS but only for a month or two. Now I've ended up on too many meds.

stjohnh
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Re: Experience with Injectafer?

Postby stjohnh » Wed Jul 03, 2019 9:20 pm

Stainless wrote:Stjohn, what exactly is Injectafer? Is that a name brand of the technique?...


Injectafer is the brand name of ferric carboxymaltose. It is the best of the 5 or 6 different types of IV Iron available. It is a liquid that is diluted then given IV piggyback as an infusion over 30 min. Two doses required, 1 week apart. It is the last column of the table on page 31 of the consensus guidelines paper.
Blessings,
Holland

Frunobulax
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Re: Experience with Injectafer?

Postby Frunobulax » Mon Jul 08, 2019 11:36 am

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

stjohnh
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Re: Experience with Injectafer?

Postby stjohnh » Mon Jul 08, 2019 1:19 pm

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
Blessings,
Holland

badnights
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Re: Experience with Injectafer?

Postby badnights » Tue Jul 09, 2019 5:25 am

Thanks Holland. I have reached out to Dr B (whom I have pestered with questions before), so I'll see what he says. If he's negative, I will try the Stanford QCC, and if that fails, I'll ask you for contact info for your GP.

Johns Hopkins can give me an appt in September, but not with anyone who has experience treating WED/RLS with IV iron, so I don't think I would get anything for my troubles other than what I already get here at home.

California is nicer than Maryland in the winter anyway...

I am feeling a bit weird about letting my ferritin drop like this - - - I had been feeling pretty good, it took so long to get it up there, maybe I am being a fool. My ferritin was the highest it's ever been in May, at 204. The next day, I stopped my oral supplements. I thought the concentration of ferritin would drop pretty fast, based on previous experiments where symptoms got worse within 3-4 weeks. But this time, symptoms started getting only a bit worse around 4 weeks, and when I got re-tested at 5 weeks, ferritin was only down to 177. At this rate, assuming it doesn't slow down, it will take 20 weeks total to drop below 100. I wonder at what point I'll stop being effective at work.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

badnights
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Re: Experience with Injectafer?

Postby badnights » Tue Jul 09, 2019 5:44 am

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
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.


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