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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Re: Experience with Injectafer?

Postby stjohnh » Wed Dec 19, 2018 8:36 pm

I am now 5 days after finishing my two Injectafer IV Iron infusions. The last two nights I felt fewer urge to move episodes and took 1/2 of my regular Mirapex dose (i.e. I took 0.0375 mg, 1/4 of a 0.125 mg tablet). Both times I had no trouble going to sleep. On prior occasions when I tried to decrease my pramipexole (Mirapex) I was unable to do that. Here's hoping this is a trend.
Blessings,
Holland

badnights
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Re: Experience with Injectafer?

Postby badnights » Mon Dec 24, 2018 8:54 pm

Ah Holland good news! I wish I could convince people here to give me iron infusions.

curqlink wrote:I had my level checked for the first time ever a few months ago. I expected it to be low considering that i augmented on Ropinirole. But it was over 200. Maybe that explains why i got by with taking a fairly high dose for 15 years tho.
You're probably right about that.
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.

stjohnh
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Location: Palo Alto, California

Re: Experience with Injectafer?

Postby stjohnh » Mon Dec 24, 2018 9:38 pm

I am now 10 days after #2 infusion. Managing on lower dose pramipexole (0.03125mg, 1/4 of a 0.125mg tablet). Continuing my other meds. I don't see much difference compared to a week ago, and still have some urge to move on my current meds. No changes for now.
Blessings,
Holland

stjohnh
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Re: Experience with Injectafer?

Postby stjohnh » Fri Jan 04, 2019 8:38 pm

I am now 3 weeks since finishing my Injectafer infusions. For the last week or so I have been doing well on 1/2 of my usual 0.0625mg pramipexole dose (1/4 of a 0.125mg tab). For the last few days I seem to have more energy in the day, but I had been fighting a nasty cold that was resolving about the same time.

I think tonight I'll try eliminating the pramipexole, while continuing my usual kratom, THC, gabapentin and dipyridamole.
Blessings,
Holland

Polar Bear
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Re: Experience with Injectafer?

Postby Polar Bear » Fri Jan 04, 2019 10:20 pm

This is such good news.
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 » Fri Jan 04, 2019 10:33 pm

Great news! I was able to reduce by about 55% after the second and third infusions. It just didn't last as long as I'd have hoped. Here is hoping yours does!
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 » Fri Jan 04, 2019 10:44 pm

ViewsAskew wrote:Great news! I was able to reduce by about 55% after the second and third infusions. It just didn't last as long as I'd have hoped. Here is hoping yours does!


Ann, do you know how fast your ferritin drops after the infusion? The IRLSSG paper recommends a ferritin at 8 weeks and 16 weeks post infusion. From that you can calculate the speed of ferritin decline.
Blessings,
Holland

ViewsAskew
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Re: Experience with Injectafer?

Postby ViewsAskew » Tue Jan 08, 2019 3:17 am

stjohnh wrote:
ViewsAskew wrote:Great news! I was able to reduce by about 55% after the second and third infusions. It just didn't last as long as I'd have hoped. Here is hoping yours does!


Ann, do you know how fast your ferritin drops after the infusion? The IRLSSG paper recommends a ferritin at 8 weeks and 16 weeks post infusion. From that you can calculate the speed of ferritin decline.


It gets longer with each one. The first was literally weeks. My doctor screwed up and at 8 weeks just did a regular CBC, so it was 16 when we did it and it was already under 100. I cannot remember the 2nd - seem to recall it was under 100 in under a year; I find I only get help if it is over 225 or so. The 3rd was a bit different. The hematologist didn't read the instructions correctly after he talked to Dr. B. So, I ended up getting two infusions of 750 instead of two at 500. They were about 2-3 weeks apart. That put my at 315 for the 8 week. It stayed high for over a year. BUT - at my most recent test I had a sinus infection; the ferritin was elevated but for the first time in my life I had low total iron - 41 - the range was 45-160. So, he wants me to get another if insurance will cover it. I don't think my symptoms are that bad, but they have slowly increased in the last few months. I am using about 25 to 30% less now instead of the 55%.
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 » Tue Jan 08, 2019 2:05 pm

Hooray!!! It is starting to look like I may have won the IV Iron Infusion Lottery!!! By that I mean that about 1/2 of people getting IV Iron have no improvement, 1/4 get some improvement, and 1/4 get complete resolution of symptoms. :D :D :D :D

A nice little aside, it looks like my insurance company may have paid for the Injectafer (total cost about $1500-2000). I was not expecting that, since the official labelling for Injectafer is that it is indicated only for iron deficiency anemia, which I don't have. They haven't actually sent me a statement saying they paid for it, but I have not received a bill from the hematologist for it, so, I am thinking the insurance company paid for it.

I am now 4 1/2 weeks after finishing my iron infusions. 4 days ago I stopped the pramipexole and had only minimal urge to move since then (NONE last night). I had continued my kratom, gabapentin, THC and dipyridamole. However, except for last night, I had much worse sleep time than I did while taking the pramipexole. I was getting frustrated and decided that perhaps the other meds I was taking were interfering with my sleep.

Last night I took ONLY kratom. I figured that abruptly stopping it might worsen urge to move symptoms, since it acts like an opioid (stimulates the mu opioid receptors), even though I had been taking a relatively small dose (about 1g per night for the last couple of years). I slept quite well.

So, at a minimum, I appear to be having a very good response to the IV iron, and as I taper the kratom over the next couple of days, I should find out if I am one of the lucky 25% who have complete remission of my RLS symptoms.

One item of note, last Wednesday, 6 days ago, (3 weeks and 6 days since finishing my IV iron course) I noticed I felt much better during the day. It is hard to describe the feeling, other than it was similar to the effect I noticed when I started taking dipyridamole last year. A feeling I describe only as feeling much more normal.

My 8 week follow up ferritin test is due about February 7.

My improvements in life style since developing severe RLS have come directly from contributions of many folks on this forum. I found out about my augmentation here. I found out about alternate DA use here. I found out about kratom use here. I found out about insomnia treatments here. I found out about adenosine and dipyridamole here. And it was here that I first read the IRLSSG paper on iron treatment for RLS.

THANKS TO YOU ALL ! ! !

Anyway, I am ecstatic. Thank you Jesus.
Blessings,
Holland

legsbestill
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Re: Experience with Injectafer?

Postby legsbestill » Tue Jan 08, 2019 5:16 pm

That is AMAZING news, Holland. It has made my day to read this. I found that there is a slight withdrawal process with kratom - even when dose is quite low - predominantly flu-like symptoms, a low mood, perhaps some elevated anxiety and some increased rls - but usually it doesn't last too long with me. Hopefully you will get off lightly.

Like you, I attribute a lot of my current good spell to information gained on this forum BUT you have been one of the primary contributors and you generously respond, knowledgeably and with concern, to almost everyone who posts a query. I would say you have easily given back any positives you take away. Thanks to you too. I hope your good spell lasts long.

Polar Bear
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Re: Experience with Injectafer?

Postby Polar Bear » Tue Jan 08, 2019 6:45 pm

Holland - such a wonderful result, you deserve it.
It's heart warming for us to hear of members who have benefited from our Discussion Board.
Thank you for keeping us updated.

I echo legsbestill..... you are a great support to so many posters. :thumbup:
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

Rustsmith
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Re: Experience with Injectafer?

Postby Rustsmith » Tue Jan 08, 2019 10:43 pm

I will add my two cents to the comments by the previous two ladies.

Holland, thank you so much for your help and assistance here. You add a level of perspective that the rest of us can never hope to match, especially when it comes to conditions other than RLS.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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

Re: Experience with Injectafer?

Postby stjohnh » Tue Jan 08, 2019 10:52 pm

Rachel, Betty and Steve. Thanks so much for the kind comments.
Blessings,
Holland

badnights
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Re: Experience with Injectafer?

Postby badnights » Fri Jan 11, 2019 2:48 am

Oh Holland, I'm crying. I don't know if it's because I'm happy for you or sad for myself! Both, I guess. I hope the benefits for you last a long time!
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.

stjohnh
Posts: 955
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Experience with Injectafer?

Postby stjohnh » Thu Jan 17, 2019 9:02 pm

I am now 6 weeks since finishing my Injectafer. Still doing well, but hit a bit of a speed bump.

I was doing wonderfully on tapering off of my kratom. My sister said "you are acting like your old self again." More alert, laughing more, more complex discussions, etc. She said, "have you been jogging?" I had jogged, pretty much daily, most of my life (less distance as I grew older) up until about 2 years ago when the low energy, low motivation, and plantar fasciitis all conspired... I stopped. Anyway, I was feeling so good, I decided to try jogging again... Even though I only jogged about a quarter mile, that evening the mild hip arthritis I have flared up.

I had been tapering my kratom and was down to only one capsule (360mg) each evening. I figured "well two days at 360mg, might as well stop it." Bad choice. About 9pm urge to move flared up, same time as hip was hurting. I took the kratom (much later than my usual 7:30pm) and Tylenol. Took another couple of hours to get to sleep, and didn't sleep very long. Last night I took Tylenol and kratom at 7:30. Urge to move well controlled, fair control of hip pain.

Not clear if I will need to stay on 360mg kratom for control of urge to move, but I am hoping the problem was too rapid taper of kratom rather than less than 100% control of RLS by the iron.

I'm planning on staying on 360mg of kratom for a few more days, then tapering the last bit more slowly, perhaps a few days at 180mg then a few days at 90mg, then stop.

In spite of the speed bump, clearly a wonderful result. I'm most happy with the improvement in "normal feeling." Didn't know how far from normal I was until recently.

Oh, got a bill from the hematologist. $2250 for Injectafer+infusion prep and administration. Insurance paid most, I pay $159. Sounds good to me.
Blessings,
Holland


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