IRLS Study group and iron IVs

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

IRLS Study group and iron IVs

Postby Frunobulax » Sat Apr 27, 2019 7:57 am

Hi all,

I have read numerous times that the IRLS group recommends iron IVs as first line of treatment. I found a study (Evidence-based and consensus clinical practice guidelines for the iron treatment of restless legs syndrome...), but is there something I can give my neurologist?

Best, Thomas

stjohnh
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Location: Palo Alto, California

Re: IRLS Study group and iron IVs

Postby stjohnh » Sat Apr 27, 2019 1:55 pm

Print this and give to your neurologist:

https://www.sciencedirect.com/science/a ... via%3Dihub

Use a yellow highlighter to mark first sentence in section 5.3.4:


"5.3.4. Expert-consensus clinical recommendations
Ferric carboxymaltose should be considered as one of the first-line treatments in patients with RLS."

There are several forms of IV iron. Ferric carboxymaltose is the chemical name of Injectafer. That is the brand of IV Iron that has the greatest research support. If your neurologist is agreeable, you should make sure you are getting Injectafer, not some other type of IV Iron. The other forms of IV Iron either require many small IV injections, or the results in RLS patients have not been studied as much. Injectafer requires two visits, 1/2 of total dose the first time, second half a week later.

Here is the link to the main discussion of Injectafer:
http://bb.rls.org/viewtopic.php?f=4&t=10227&hilit=injectafer
Blessings,
Holland

Frunobulax
Posts: 212
Joined: Mon Jun 02, 2014 7:41 pm

Re: IRLS Study group and iron IVs

Postby Frunobulax » Mon Apr 29, 2019 12:21 pm

stjohnh wrote:Print this and give to your neurologist:

https://www.sciencedirect.com/science/a ... via%3Dihub

Use a yellow highlighter to mark first sentence in section 5.3.4:


That's the one I have, yes. Unfortunately my neurologist has been reluctant to accept studies, arguing that a study can prove whatever the organization giving the money want's to prove. (Which is unfortunately correct in some cases.) We'll see how it goes :-)

badnights
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Location: Northwest Territories, Canada

Re: IRLS Study group and iron IVs

Postby badnights » Wed May 01, 2019 8:01 am

The paper holland linked to is not a single study, it is a review of all the available studies. If your neuro wants to pooh-pooh things, though, that won;t stop him. Also most of the authors have no disclosed financial relationships that might represent a conflict of interest (but some have received research grants from pharmaceutical companies and one has received personal fees for things unrelated to the work).
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.

srgraves01
Posts: 97
Joined: Wed Apr 24, 2013 4:34 am

Re: IRLS Study group and iron IVs

Postby srgraves01 » Fri May 03, 2019 10:11 am

You might try doing this with a hematologist. Hematologists do this kind of procedure more frequently than neurologists. Your doctor may just be uncomfortable about doing a procedure that he/she is unfamiliar with. You might see if you can find a hematologist who can help you.

Steve

srgraves01
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Joined: Wed Apr 24, 2013 4:34 am

Re: IRLS Study group and iron IVs

Postby srgraves01 » Fri May 03, 2019 3:41 pm

What is the dose used in IV iron?

Steve

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

Re: IRLS Study group and iron IVs

Postby stjohnh » Fri May 03, 2019 4:29 pm

The IRLSSG guidelines for US are Injectafer 750mg then repeated 5-7days later (1500mg total).
Blessings,
Holland

srgraves01
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Joined: Wed Apr 24, 2013 4:34 am

Re: IRLS Study group and iron IVs

Postby srgraves01 » Fri May 03, 2019 8:26 pm

Thanks Holland.

Steve

badnights
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Re: IRLS Study group and iron IVs

Postby badnights » Sun May 05, 2019 3:12 am

Apparently hematologists tend to be uncomfortable with IV iron for anything other than iron-deficiency anemia, so it might be just as hard to find a willing hematologist as neurologist. Or just as easy, if you're a glass half-full kind of person :)
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.

ViewsAskew
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Re: IRLS Study group and iron IVs

Postby ViewsAskew » Tue May 07, 2019 11:16 pm

badnights wrote:Apparently hematologists tend to be uncomfortable with IV iron for anything other than iron-deficiency anemia, so it might be just as hard to find a willing hematologist as neurologist. Or just as easy, if you're a glass half-full kind of person :)


I have talked to several - they are VERY uncomfortable! I once had a hematologist who was an older guy - guessing in his early 80s - who only worked one day a week. He wasn't going to do it and I pulled out my cell and called Dr. B and handed him the phone. They talked for 10 minutes and then, voila, I was scheduled for my infusion! If it had just been me, even with the letter from Dr. B, and the research I brought, I'd not have gotten it.
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.

Frunobulax
Posts: 212
Joined: Mon Jun 02, 2014 7:41 pm

Re: IRLS Study group and iron IVs

Postby Frunobulax » Sun May 19, 2019 8:46 pm

The IRLS study group paper points out that iron values in the brain can be low even for patients with high blood iron levels (ferritin and transferrin saturation), and that there was no significant difference in the rate of responders when iron levels were high or low before the IVs.

However, I have read something (here?) pointing out the connection WHY low brain iron could cause RLS, which is not mentioned in the IRLS paper. I think because of lower dopamin production or something? Could someone please point me towards sources? :) I'm asking because I just learned that all my neurotransmitters are low, significantly lower than normal. I would like to understand possible reasons for that.

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

Re: IRLS Study group and iron IVs

Postby stjohnh » Sun May 19, 2019 10:15 pm

Frunobulax wrote:...
However, I have read something (here?) pointing out the connection WHY low brain iron could cause RLS, which is not mentioned in the IRLS paper. I think because of lower dopamin production or something? Could someone please point me towards sources? :) I'm asking because I just learned that all my neurotransmitters are low, significantly lower than normal. I would like to understand possible reasons for that.


This is a link to the abstract of reference 39 cited in the IRLSSG paper:
Altered Brain iron homeostasis and dopaminergic function in Restless Legs Syndrome (Willis–Ekbom Disease)
https://www.sciencedirect.com/science/a ... via%3Dihub
Unfortunately the paper itself is behind a paywall $35 :-(

This article is free and generally helpful and understandable, but doesn't really address exactly how low brain iron affects dopamine: Restless Legs Syndrome: Current Concepts about Disease Pathophysiology.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4961894/

This article is probably the most complete in discussing RLS pathophysiology and neurotransmitters. It is the article that has kicked off the search for adenosine modulators as treatments for RLS. The only currently available one to regular doctors is dipyridamole, and clinical studies are going on now evaluating dipyridamole as treatment for RLS. The first few pages give a lot of info on iron and neurotransmitters. It details how BID (Brain Iron Deficiency) causes A1R (an adenosine receptor) downregulation and how that affects the dopaminergic and glutamatergic neurotransmitter pathways.
Pivotal Role of Adenosine Neurotransmission in Restless Legs Syndrome
https://www.frontiersin.org/articles/10 ... 00722/full

Unfortunately, however, many of the details of how iron affects the neurotransmitters are not known, and exactly why neurotransmitter dysfunction causes the movement and sleep abnormalities in RLS are also not known. As you will learn, iron is critical to most of the oxidative processes in all living cells, what is really remarkable is that we are able to function as well as we do with low brain iron.
Blessings,
Holland

Frunobulax
Posts: 212
Joined: Mon Jun 02, 2014 7:41 pm

Re: IRLS Study group and iron IVs

Postby Frunobulax » Mon May 20, 2019 8:10 pm

Thanks :-)
Exactly what I was looking for.

badnights
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Re: IRLS Study group and iron IVs

Postby badnights » Tue May 21, 2019 5:52 am

I have moved this topic to the Prescription forum. A pointer left behind in the Physical Treatments forum will lead you here.
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.


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