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.
badnights
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Re: Experience with Injectafer?

Postby badnights » Sun Jan 20, 2019 9:49 pm

The inflammation or just the pain itself or something about the hip injury could be what triggered your WED/RLS that night. It might be good if you can keep from doing anything that might cause your arthritis to flare up while you are tapering, so you can have a better idea of the cause if your WED/RLS flares up.

Didn't know how far from normal I was until recently.
sigh. I guess it's an adaptive mechanism, to accommodate and re-accommodate ourselves to our new circumstances as they gradually gets worse and worse. That accommodation helps us to deal with the worsening conditions, but it also prevents us from adequately describing our lives to our physicians. "I slept really well last night" can mean I had a solid 1.5 hr at some point in the night, and I'm so happy for that.... but how misleading to a listener.
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 » Mon Jan 21, 2019 4:52 pm

Copied from another thread. This is Reba1's first post:

Reba1 wrote:I am going for my first iron infusion this Wed., the 23rd. I am a little apprehensive and wonder if anyone has had an infusion. In my research, there are many references to patients having them 6-8 times, each lasting 6+ hours. My hematologist told me mine would be done twice...a week apart and each lasting about 45 min. This is confusing me; are there different types of iron infusions and is the kind I’m anticipating common for RLS patients? The side effects don't sound bad or common so I’ve decided to talk myself out of worrying about them! Any suggestions, hints, or success stories after the infusion would be greatly appreciated.


Reba,
Welcome to the RLS community. You will find lots of folks here that truly understand how devastating this illness can be. Lots of experience and knowledge.

You will probably be getting Injectafer. This is a newer IV Iron preparation that requires only two visits, a week apart. Many older preparations required many more visits. Injectafer has the most scientific data supporting its use in RLS. Side effects are minimal and most people have none at all. Be aware that not all people with RLS have improvement with IV Iron. You are lucky to have found a hematologist willing to give it to RLS patients, many won't.

Start reading at the start of this topic to get more information about users experiences. To see the start, scroll to the top of this page. At the right, near the top, below the pink bar, you will see 1 2 3 in blue boxes. Click on the 1.

Blessings,
Holland
Blessings,
Holland

legsbestill
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Re: Experience with Injectafer?

Postby legsbestill » Mon Jan 21, 2019 10:24 pm

Holland, I hope things have settled down and you have returned to 'normal' you. I suspect that Beth may be correct that aggravating the hip may have irritated your rls. It could also be the reduction/elimination of kratom. I definitely find an appreciable - though not excruciating - increase in my rls symptoms when I eliminate kratom after using it regularly for a while. It always settles down in about 5 or 6 days. Hopefully the very gradual reductin you now plan will mean it will be minimal for you. Rachel

stjohnh
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Re: Experience with Injectafer?

Postby stjohnh » Mon Jan 21, 2019 11:27 pm

legsbestill wrote:Holland, I hope things have settled down and you have returned to 'normal' you. I suspect that Beth may be correct that aggravating the hip may have irritated your rls. It could also be the reduction/elimination of kratom. I definitely find an appreciable - though not excruciating - increase in my rls symptoms when I eliminate kratom after using it regularly for a while. It always settles down in about 5 or 6 days. Hopefully the very gradual reductin you now plan will mean it will be minimal for you. Rachel


Thanks Rachel. I'm hoping that my speedy kratom tapering is the culprit. Hip pain pretty much gone now. I have been staying on 360mg kratom and slowing taking it later in the evening. Not planning on decreasing it for at least a few more days.

My sleep pattern is topsy turvy compared to when I was taking a handful of pills every night. Mostly not getting to sleep until 12 or 1AM, sleeping until 4-5 am, awake for an hour then sleeping for another hour. A little tired in the day, but still feel much better on 5-6 hours sleep with minimal meds (just the touch of kratom) than with 7-8 hours of drugged sleep. Your comments have encouraged me. I was starting to get a bit down in the dumps, thinking I may have to stay on the kratom and/or having to start something to help me sleep better. Urge to move still well controlled with the minimal dose kratom, even taken later in the evening. Before my iron infusions I would routinely get mild urge to move symptoms starting around 5-6 pm. Resolved by about 8 pm with pramipexole at 6:30 pm.
Blessings,
Holland

Reba1
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Re: Experience with Injectafer?

Postby Reba1 » Tue Jan 22, 2019 12:15 am

Thank you SO much, Holland. I appreciate your directing me to a very helpful section of RLS treatment. I’ll read it all and hopefully I’ll not have any surprises when I go for the first infusion.
I appreciate your guidance!

stjohnh
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Re: Experience with Injectafer?

Postby stjohnh » Thu Jan 24, 2019 3:45 pm

Well, I am now 7 weeks post Injectafer infusion. It has taken about a week to stabilize after my "speed bump" of too rapid taper off kratom.

Current status: I am still on 360mg/night kratom, no other RLS meds. Urge to move close to non-existent. Sleep slowly approaching "normal" for 5-10 years ago. That is, I fall asleep about 11-12 and except for potty breaks, sleep until about 5-6AM. No problem falling back to sleep after potty break.

I also noticed that the chest pain problem I had been having for the past 6-9 months seems to be improving. I think I have esophageal spasm, GI evaluation is coming on Monday. I suspect that it is responding to the IV Iron as well. I still have several episodes a day, but less frequent and not as severe. See "Esophageal Spasm and RLS" if you are curious. http://bb.rls.org/viewtopic.php?f=5&t=10360

Over the past week I have had several friends and relatives make comments like "you seem more alert," "you seem less sleepy," "you seem sharper."

Daytime energy is slowly improving and I am becoming more functional after noon than than previously. I am actually doing some stuff after 6pm. Previously my activity after 6pm was pretty much watch TV...

As I have considered my plans going forward... Taper kratom (am planning on dropping to 180mg starting tonight, go for at least a few days, then dropping to 90mg).

Since the pathophysiologic path of RLS symptoms is genetic (can't do much about that, thanks mom)-> low brain iron-> low extracellular adenosine->abnormal dopamine and glutamate receptor function->urge to move and insomnia, it seems to me that I should concentrate on the lower level problems as much as possible. That is, do whatever I can to keep brain iron deficiency (BID) in check first. If I can't get good relief from that alone, add dipyridamole (adenosine transport inhibitor), and only if that doesn't provide acceptable symptom control, add meds that act on dopamine and glutamate paths (kratom seems like the one that has the fewest side effects for me).

To that goal I have ordered some transdermal iron patches (almost no evidence pro or con on effectiveness). I plan on starting that and restarting oral iron next week after my 8 week protocol ferritin test. I am thinking of taking my oral iron every other day. There is good evidence that twice daily iron is not as good as once daily iron (probably due to hepcidin feedback) and some data suggesting that higher total absorption of oral iron occurs with every other day dosing, since it takes several hours for hepcidin to respond to a single oral iron dose and the hepcidin levels take more than 24 hours to fall. It is possible that the oral iron is a complete waste of time for me, since my ferritin level is certain to be above 100, causing hepcidin to increase.
Blessings,
Holland

legsbestill
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Re: Experience with Injectafer?

Postby legsbestill » Fri Feb 01, 2019 9:55 am

That is wonderful news, Holland. Am absolutely delighted for you. It makes me feel more positive about my own situation as I am pretty convinced my rls responds to improved iron levels. It looks like I would have to travel to another country to get an Injectafer transfusion but would be worth it.
I have posted about my experience with the iron patches on that thread. They did at least maintain my serum ferritin levels so well worth a go. I used a patch every second day.

stjohnh
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Re: Experience with Injectafer?

Postby stjohnh » Fri Feb 08, 2019 6:56 pm

I am now 9 weeks post infusions. Still 95% reduction in RLS symptoms. I have continued on low dose kratom (360mg at night) because of a bad cold, kratom is a very effective cough suppressant.

8 week post infusion ferritin came back. Now 735. Was 90 before infusion.
Blessings,
Holland

Polar Bear
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Re: Experience with Injectafer?

Postby Polar Bear » Fri Feb 08, 2019 8:33 pm

95% reduction in symptoms. That is like a miracle. !!
Betty
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ViewsAskew
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Re: Experience with Injectafer?

Postby ViewsAskew » Sun Mar 03, 2019 4:48 am

Polar Bear wrote:95% reduction in symptoms. That is like a miracle. !!


Indeed! I am thrilled with my 45-55% decrease - I can only imagine a 95% one!
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.

stjohnh
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Re: Experience with Injectafer?

Postby stjohnh » Sun Mar 03, 2019 2:51 pm

The last month has been hard health-wise. Happily, RLS continues under wonderful control after my Injectafer. But I got Whooping Cough on top of my asthma exacerbation and just last week got a touch of the shingles... ugh.
Blessings,
Holland

Polar Bear
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Re: Experience with Injectafer?

Postby Polar Bear » Sun Mar 03, 2019 3:36 pm

What an awful run of bad luck health-wise. I hope you are on the mend and in particular that the shingles remains 'only a touch'.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Experience with Injectafer?

Postby ViewsAskew » Mon Mar 04, 2019 2:59 am

Oh, my!

The Whooping Cough outbreak here in So Cal is quite terrifying. Every time I walk outside and someone is coughing, I have to wonder if I am next. So sorry you have it along with everything else.
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.

stjohnh
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Location: Palo Alto, California

Re: Experience with Injectafer?

Postby stjohnh » Sat May 04, 2019 1:01 am

Well, I am now about 6 months post Injectafer infusions. I got over the speed bumps of whooping cough and shingles. I continue with frequent colds, the downside of having a 3 year old and 4 year old grandson and granddaughter around frequently.

RLS remains 95% controlled. I occasionally get a mild urge to move in my legs, easy to control just by standing up, don't need to dance around and it's not very distracting. That occurs for a few minutes every couple of days. Never any urge to move when I'm trying to go to sleep. Once in a blue moon, well maybe once a month, I will awaken around midnight with what feels like a marked urge to move spell, but I just shake my legs a bit and it resolves, don't even need to get out of bed, and I fall asleep easily after the bathroom break. I still frequently stand up while I'm watching TV in the evening. It just "feels better." I don't know if that is a very mild form of urge to move symptom, or perhaps the years of having to stand and pace around in the evening has just made that a comfortable habit.

Sleep has continued to improve, I have been off kratom now for about 6 weeks, mostly go to sleep about 9 or 10. Get up a couple of times for bathroom breaks and sleep until 5:30 or 6:30AM. I fall asleep mostly easily, both initially and after bathroom stops. No sleeping meds or RLS meds, only my regular thyroid, BP, vitamins, prostate, etc meds.

I awaken feeling somewhat refreshed (much more so than at anytime before my iron infusions). I am able to function both mentally and physically reasonably well throughout the day and evening. Prior to my iron treatment I didn't ordinarily plan to do anything remotely productive or anything that required emotional sensitivity or more than minimal cognition after about 12 noon.

I still notice a relatively low motivation to do chores and errands that don't absolutely need to be done, that started soon after first starting Mirapex 5 years or so ago. I don't know if that is a permanent change in my personality due to the Mirapex (pramipexole) I took for several years, or if it is just part of me growing older. It does seem to be improving a bit, but very slowly.

So, as you can see, I've had a wonderful result. Sometime soon (within the next six months) I should start getting RLS symptoms back as the now somewhat normal level of iron in my brain slowly leaks back into my blood stream. At least that is the usual pattern for someone who has had a good result from their first set of iron infusions.
Blessings,
Holland

badnights
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Re: Experience with Injectafer?

Postby badnights » Sun May 05, 2019 3:22 am

Awesome results, Holland! I appreciate your clear and specific reporting, too.
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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