Iron IV Treatments

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.
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stephenstrumMD
Posts: 1
Joined: Wed Dec 30, 2020 3:14 pm

Iron IV Treatments

Post by stephenstrumMD »

I am an MD but not a neurologist nor a specialist in restless legs syndrome (RLS). I am on this forum trying to see if I can find help for a former patient of mine who has RLS. In my wish to help him I have read over 100 papers on RLS and been in contact with some of the major MDs (Chris Earley) in this field. Insofar as this thread is concerned, I would say that many of the posts on iron do NOT reflect the information revealed in many peer-reviewed papers on this topic. Brain iron is deficient in many RLS patients who have been studied. Oral iron does not the therapeutic benefit as does i.v. iron. Preparations like ferric derisomaltose (Monoferric®) or ferric carboxymaltose (FCM) are major advances in i.v. iron administration insofar as safety. Moreover, the literature on this topic indicates that one infusion of 1000 mg of i.v. iron is sufficient to ascertain response in those with RLS.

Bottom line: if you are going to use iron have an MD experienced in giving this via the i.v. route and use one of the newer safer iron preparations such as above.

I see other posts that also should have remarks made. I do not know if this site allows a user to attach PDFs. BTW, I use an app called EndNote which can be tried for free x 30 days via www.endnote.com. My EndNote library on restless legs syndrome (RLS) now has 262 citations with the majority of those having attached PDFs. I would be glad to share this library with any of you who have EndNote on your computer. This can be done by my saving my RLS library to a Dropbox file which is pubic but by invitation only. Those interested can Google EndNote and look at some videos. Insofar as ropinirole (Requip®), I have 50 citations. And re augmentation, I have 21 citations with many PDFs. And on this forum, the topic of clonazepam for RLS has come up and there are 3 citations in my EndNote library. I just discovered I could add files to this post so there are two from my EndNote library attached.
Attachments
Quilici 08 Meta-analysis of the efficacy and tolerability of pramipexole versus ropinirole in the treatment of restless legs syndrome.pdf
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Montplaisir 06 Ropinirole is effective in the long-term management of restless legs syndrome- a randomized controlled trial.pdf
Montplaisir is a key person in the field of RLS
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Rustsmith
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Re: new member - transitioning from ropinirole to gabapentin

Post by Rustsmith »

I am on this forum trying to see if I can find help for a former patient of mine who has RLS.
Thank you for making the effort to learn about RLS. A great number of us would be far better off if more physicians took the effort to learn about our disease and that includes many neurologists and GPs.
Insofar as this thread is concerned, I would say that many of the posts on iron do NOT reflect the information revealed in many peer-reviewed papers on this topic.
Please remember that this is a forum that is run by and for RLS patients. The moderators do our best to try to correct incorrect or misleading statements, but we do our best to not censor posts but to provide correct information in a subsequent posting. Like yourself, many of us have either spoken to or have been patients for many of the RLS experts, including Drs Earley, Allen, Buchfuhrer and Ondo. We are not trying to provide medical advice, but our best to try to educate our members and to help them when their doctor either refuses to treat their RLS or even worse, tries to treat it using the FDA guidelines for Parkinsons and then has no understanding of how to treat dopamine agonist augmentation.
if you are going to use iron have an MD experienced in giving this via the i.v. route and use one of the newer safer iron preparations such as above.
We are in complete agreement on this. The problem that many of us have faced is that in order to go the IV route, we are frequently referred to hematologists and many of these physicians have refused to perform the treatment because the patient is not anemic. You mentioned Dr. Earley in your note. He went to the trouble of becoming certified to perform iron IV treatments because he had so much trouble finding hematologists to treat his patients. This problem is getting better as the word gets out, but it is still a problem in many areas.
I do not know if this site allows a user to attach PDFs
Unfortunately, we cannot allow attachments of PDF files. This discussion board is over 20 years old and still contains the older posts because they can help provide perspective and some of the old posts touch on unusual subjects. As such, the size of the overall database is quite large and pushes the limits of the server space that the RLS Foundation can afford to support. If we were to allow PDF and other attachments, we would very quickly exceed the size limit on our server. The moderators would also need to verify that all attachments complied with copyright law and had the owner's permission to repost, which would be an impossible task for just a few volunteers. So, we have to rely upon the use of links to documents that are publicly on the Internet.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: new member - transitioning from ropinirole to gabapentin

Post by stjohnh »

stephenstrumMD wrote:
Wed Dec 30, 2020 4:33 pm
I am an MD but not a neurologist nor a specialist in restless legs syndrome (RLS). I am on this forum trying to see if I can find help for a former patient of mine who has RLS. In my wish to help him I have read over 100 papers on RLS and been in contact with some of the major MDs (Chris Earley) in this field.
Wow, I'm impressed. A doc reading 100+ papers to help one patient with RLS. You are a doc going beyond the call of duty.

I agree with your positive comments about IV Iron, especially FCM (Injectafer). Some of our members put more emphasis on oral iron than I think the literature warrants. However, in the real scheme of IV iron treatments, few of the RLS patients with a ferritin less than 100 are likely to get IV Iron from most docs without a trial of oral iron first. So I don't think that those suggesting oral iron are causing a disservice to the forum, as anything that will get docs to more carefully consider IV iron for their patients is a good thing. Also, while the response of most RLS patients to oral iron is not very good, there are some people that are really helped. If you have looked at some of the IV iron posts, you will find that most people here trying to get IV iron are not successful. Mostly because the knowledge of most docs on iron is "if your ferritin is normal, you don't need iron." Breaking the logjam of low knowledge of iron metabolism among the ordinary docs treating RLS is a BIG problem.

Steve's post about hematologists is pertinent as well, the poor knowledge of iron physiology, and the role of IV Iron in RLS extends to hematologists, who should know better.
Blessings,
Holland

badnights
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Re: Iron IV Treatments

Post by badnights »

holland wrote:Steve's post about hematologists is pertinent as well, the poor knowledge of iron physiology, and the role of IV Iron in RLS extends to hematologists, who should know better.
- @stephenstrumMD - which is why we;re so happy you're making the effort to help. The knowledge you gain is going to benefit many more than just one former patient. '

re oral iron it's just as the others say - - most of us would love to get infusions. Perhaps we'd love to have a hematologist like you. But I can't even get a referral to a hematologist from my sleep specialist. I flew from Canada to California last year and paid thousands of dollars for an iron infusion. I can't go back because of covid, and I can't get one here because my ferritin is not under 40.
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.

Goldielocks
Posts: 8
Joined: Sat Feb 03, 2018 10:59 am

Re: Iron IV Treatments

Post by Goldielocks »

I have had two IV Iron treatments with the last one on Sept. 7, 2021. I am still experiencing moderate to severe RLS symptoms 5 or more times a week. On occasion, I am up all night walking, exercising or some form of activity to relieve my misery. After almost a month since completing my iron treatments, it does not appear they are providing the relief I had hoped for. Is it unreasonable to expect relief one month after treatments are completed?

I am also currently on 2 mg of Neupro and 600 mg of Horizant daily.

Goldielocks

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Iron IV Treatments

Post by stjohnh »

Improvement can take up to 2 months. But remember only about 1/2 of people who get IV iron have a good response.
Blessings,
Holland

Oozz
Posts: 217
Joined: Wed Oct 11, 2017 8:09 pm

Re: Iron IV Treatments

Post by Oozz »

I don’t think there is a lot of research on the effectiveness of IV iron. And, the research that is there is pretty narrow in regards to population size, type of iron and amount. The only reason I bring it up is because I think there are a lot of unknowns with regards to how effect it could be.

ViewsAskew
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Location: Los Angeles

Re: Iron IV Treatments

Post by ViewsAskew »

Goldielocks wrote:
Wed Oct 06, 2021 1:02 am
I have had two IV Iron treatments with the last one on Sept. 7, 2021. I am still experiencing moderate to severe RLS symptoms 5 or more times a week. On occasion, I am up all night walking, exercising or some form of activity to relieve my misery. After almost a month since completing my iron treatments, it does not appear they are providing the relief I had hoped for. Is it unreasonable to expect relief one month after treatments are completed?

I am also currently on 2 mg of Neupro and 600 mg of Horizant daily.

Goldielocks
The more important question, to me, is what is your serum ferritin level? Depending on the amount and type of iron and your body, it may not have raised it much. It takes at least 8-10 weeks to impact me at all. And, my serum ferritin must be over 280 to impact me at all.
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.

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