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.
stjohnh
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Location: Palo Alto, California

Re: Experience with Injectafer?

Post by stjohnh »

I haven't had anything but good results from my IV Iron. I am now at 3 months after my second set. I have continued to have improvements, after the resolution of urge to move, since then. Some related to RLS, some not at all. I suspect the genes causing BID (Brain Iron Deficiency) affect iron metabolism in other parts of my body. Specifically, in order of impact of my quality of life:

1. Continuing improvement in sleep. I can now sleep 3 hours at a time before having to get up and pee (prostate enlargement), prior to IV iron, 2 hours max. I also sleep later in the morning. Now frequently to 7AM, before IV iron I could never sleep past 5AM. Almost always I fall asleep in less than 20 min. after going to bed. Before IV Iron I needed THC every night or I wouldn't fall asleep for at least an hour, sometimes up to 3 hours.
2. Daytime energy improvement. Before IV iron I would get sleepy, grumpy and tired starting about noon or 1PM. All noticeably better. I don't get sleepy until about 9:30 or 10PM now.
3. Improved feeling of well-being or "normal." This is hard to describe, but is different than 2. above. The only other treatment that helped this was dipyridamole.
4. Fewer chest pains. I have esophageal spasm. Before IV iron I would get 15-30 second episodes of chest pain, 5-10 times daily, sometimes very severe. Now only 1-2 times daily, and always mild.
5. Fewer night cramps. Before IV iron I would get 2-4 episodes per night, mostly in my calves and thighs, mostly when I got up to pee, sometimes extremely painful. Now I get 1-2 episodes per WEEK, and always mild.
6. This is the really odd one. This doesn't affect quality of life at all. For most of my adult life, until my RLS started interfering with my sleep, when I sneezed, I always sneezed in paroxysms of 9-11 sneezes. I NEVER sneezed the "normal" way, IE one or two or three sneezes. When my RLS got to the moderate stage, about 7-8 years ago, my sneezing pattern changed to the usual adult pattern. Now, after IV iron I am sneezing again the way I have for most of my adult life, paroxysms of about 10 sneezes in a row, about 5-10 seconds between each sneeze. Odd, isn't it?
Blessings,
Holland

badnights
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Re: Experience with Injectafer?

Post by badnights »

Odd indeed! But how wonderful .. not the sneezing, but everything else.
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.

fuz_mind
Posts: 108
Joined: Sun Apr 23, 2017 4:27 pm

Re: Experience with Injectafer?

Post by fuz_mind »

stjohnh wrote:
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/a ... 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.


@stjohn - do you worry about the long term side effects of repeated IV iron? ever since my neurologist checked guidelines with Prof Allen and is now keen to give me another dose of 1000 mg IV iron, the irony is I started worrying about having too many IV irons. (my latest bloods r ok although the symptoms r slowly creeping back) I have had 3 IV in 4 years. theory behind rls is BID - I started worrying about having too much iron in my brain if I have too many repeated infusions. the newer research seems to suggest that neurodegnerative diseases like Parkinson is tied to too much brain iron. Is it possible to get too much iron in the brain from IV iron? I asked my neuro about it but he was so hesistant with his reply that I didn't believe him.

i'm needing some corrective information on this. is there anyone out on the boards who is able to provide a more informed response ?

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

Re: Experience with Injectafer?

Post by stjohnh »

fuz_mind wrote: ...
@stjohn - do you worry about the long term side effects of repeated IV iron?...
Well, I believe (but am not sure) that it would take many IV Iron infusions to cause organ damage. Hemochromatosis is the most common manifestation of iron induced organ damage, and those people almost always have a ferritin of over 1000.

The positive results from my IV Iron are so life changing for me that I would continue even if I KNEW it would shave several years off my life span.

My wife claims I have a hard head, now I can agree with her. LOL.
Blessings,
Holland

Frunobulax
Posts: 296
Joined: Mon Jun 02, 2014 7:41 pm

Re: Experience with Injectafer?

Post by Frunobulax »

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.
As a followup, unfortunately the iron IV did nothing for me. Medication is the same as before. Too bad.

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

Re: Experience with Injectafer?

Post by Frunobulax »

fuz_mind wrote: @stjohn - do you worry about the long term side effects of repeated IV iron?
Iron has a bad reputation because ferritin goes up with inflammation, therefore chronically ill people tend to have higher ferritin. However, nothing I've read indicates that iron contributes to the problem in any way.

We have to separate observational twaddle from intervention. I have yet to see a single study where iron supplementation (or IVs) were linked to any negative effects. Iron is an indicator, not the cause -- if you see a lot of ambulances in your city then you may have a lot of traffic accidents and whatnot, but it doesn't mean that ambulances are the problem.

stjohnh
Posts: 1084
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Experience with Injectafer?

Post by stjohnh »

Good news update: I saw my doc a few days ago for BP check. Got lab done at same time. Ferritin 477, Transferrin Sat=42%. This is 26 weeks after my second set of Injectafer infusions. My ferritin was 260 at 22 weeks after my first set, and at that time was having recurrence of urge to move symptoms, so got my second set 2 weeks later.

Anyway, besides having only minimal RLS symptoms, my current Ferritin of 477 at 26 weeks post infusion, suggests my RLS may continue with good control until about May or June this year, assuming the rate of fall of ferritin is similar to that of my first set of infusions. That would make symptom relief continue for about 10-11 months from second set.
Blessings,
Holland

ViewsAskew
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Re: Experience with Injectafer?

Post by ViewsAskew »

Great news!
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.

badnights
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Re: Experience with Injectafer?

Post by badnights »

Holland, what are you taking for WED now? I am sure you have it written here somewhere, apologies for asking. Are you still taking dipyridamole?
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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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Experience with Injectafer?

Post by stjohnh »

badnights wrote:Holland, what are you taking for WED now? I am sure you have it written here somewhere, apologies for asking. Are you still taking dipyridamole?
Nothing for urge to move. Urge to move is almost non-existent.

I had been occasionally using THC for sleep, but after reading the last article on opioid function in RLS, I decided to try kratom and found it made getting to sleep a little more consistent, but more importantly, made going back to sleep much easier (I get up several times to pee, old man prostate). AND it made it possible to get back to sleep if I awaken after 5AM. Before kratom, if I awoke after 5AM, I could never get back to sleep. I take 720 mg at 8PM and repeat that between 1-3AM. No dipyridamole.
Blessings,
Holland

Polar Bear
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Re: Experience with Injectafer?

Post by Polar Bear »

Holland, you say you take Kratom 720mg at 8pm and then again during the night.
So approximately 3/4 gram at 8pm and again later, your total is only 1.5 grams. Is that all that you take? You feel that 1.5 grams helps your sleep and sees you through the night. That's excellent.

I'm taking Kratom as 1 level teaspoon = 2 grams, before bed. Don't take a dose all the time and occasionally having not taken it before bed will then take it during the night. Using it perhaps 3 nights in a row and then leave it out for 3 nights.
Sometimes I've taken 2 grams at bedtime and another 2 grams later on, making 4mg total but not often.
I think it helps with the sensations but not really the sleep.

Im interested that you do so well on only 1.5 grams.

I have a note that:
mild or stimulating = 2 - 4 grams
moderate stimulating or sedative = 6 - 8 grams
sturdy analgesic sedative 8 grams (not recommended)
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

stjohnh
Posts: 1084
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Experience with Injectafer?

Post by stjohnh »

Polar Bear wrote:Holland, you say you take Kratom 720mg at 8pm and then again during the night.
...
Im interested that you do so well on only 1.5 grams...
Well, remember that nearly all my RLS symptoms are controlled with the IV Iron infusions. Also, I seem a little more sensitive to most drugs than average, mostly I respond well to the minimum recommended doses.
Blessings,
Holland

Polar Bear
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Re: Experience with Injectafer?

Post by Polar Bear »

Of course. I hadn't thought it through properly about how your IV Infusion is working so well. Thank you
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

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

Re: Experience with Injectafer?

Post by stjohnh »

Well, I just had the first of my 3rd set of IV Injectafer Iron infusions, 2nd of the set is next week. Injectafer is given as two infusions, one week apart. RLS symptoms are coming back, but still mild. Interestingly, my ferritin a week or so ago was 452, I was afraid the hematologist would cancel my Injectafer treatment (guidelines say subsequent infusions are OK up to ferritin=300), but he didn't, perhaps because my iron saturation was still fairly low (he didn't check the transferrin saturation). About 10 months has past since the second set of IV iron. The first set lasted 22 weeks. Actually, if it wasn't for the increasingly annoying esophageal spasm pain and increasing post-whooping-cough coughing spells, I probably would have waited longer before requesting the Injectafer. Both the esophageal spasm and coughing spells are clearly related to my brain iron levels (as judged by how much better they got after my prior two sets of IV Injectafer).

My current RLS symptoms are: urge-to-move is quite annoying if I have to sit still for more than 10-15 minutes and it is after about 4 in the afternoon. I take low dose kratom at about 8pm and usually vape a little THC about 10pm. I am easily able to sleep with that combination. I stand up to watch TV if it is after 5-6 pm. Sleep and urge-to-move will likely improve over the next month with the IV Iron.
Blessings,
Holland

badnights
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Re: Experience with Injectafer?

Post by badnights »

Holland, what do you mean by iron saturation? I think I have a handle on transferrin saturation, TIBC & UIBC, iron concentration, & transferrin index, but I thought iron sat was just another term for transferrin sat.

What was your sat. when your ferritin was 452?

I'm being advised against another infusion right now based on a sat. of 52% (and ferritin 308). It's a bit weird - two months post-infusion, my sat. was 44% and serum iron was 123 microg/dL. At that point I was definitely feeling benefits, I had dropped my hydromorphone from 9 to 6 mg daily. Seven and a half months post-infusion, symptoms had been bad again for about 1.5 months, my sat. was 52%, serum iron 140. Quite an increase, I would have expected it to DEcrease.

The cause of the increase has to be that I re-started oral iron 3 weeks before the test (I am kicking my own butt about that now, but I had irrational reasons for not getting tested, stemming from depression). But how can 3 weeks of oral iron cause more of an increase than the infusion did? Maybe my hepcidin is messed up and I absorb iron even when my blood is full of it. I also am convinced I get worse symptoms if I take 2 instead of 3 ferrous sulfate pills/day, but common wisdom is I'm just pooping it out.

Quite aside from that, I think none of the iron numbers we use are being interpreted correctly and they're probably inadequate to guess at status of brain iron. My body tells me the infusion was good for me, that it has worn off and another one is in order - no matter what the numbers are saying.
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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