Is Iron infusion painful?: Someone just... - Restless Legs Syn...

Restless Legs Syndrome

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Is Iron infusion painful?

grandpianoman
grandpianoman

Someone just told me that iron infusions are painful. Is that the experience of those of you who've tried it for RLS?

31 Replies
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I had one and it was extremely UNpainful. Of course, in the split second the needle penetrates the skin, it stings. But I have a 'tough' skin. When I sat (comfortably) and waited for the infusion to proceed I didn't feel a thing. I brought a book and read, and chatted a little with other people in the room. Most others received infusions of medicines for their chronic diseases.

If by chance it IS painful, you should warn the nurse, as something may have gone wrong. That was what I was told.

grandpianoman
grandpianoman in reply to LotteM

Thank you for that reassuring reply!! Next question: what were the results so far as RLS was concerned? Lessen or eliminate, and for how long?

LotteM
LotteM in reply to grandpianoman

Nothing. The only 'positive' was a rise in ferritin. Prior to the infusion my ferritin had risen to just over 100 ng/L by taking iron orally (iron bisglycinate every other day) at bedtime. Three months after the infusion is was 240 ng/L. No changes in symptoms or energy levels. Which puts me firmly in the group of non-responders, about half of the people given an infusion.

I hope your results will be better!

grandpianoman
grandpianoman in reply to LotteM

Sorry it didn't work for you, and thank you for yr wishes that my infusion (yet to be approved) will relieve me of RLS.

Hi. It’s great you are getting the chance to see if an iron infusion helps. I think I’ve had 12 or so & haven’t had any pain issues. If you’ve ever had an IV it’s the same technique except instead of clear fluid running in it truly is a rusty nail color. It’s amazing how these have changed. When I had my first one They ran it in very slowly over 8 hours & I had to be in a private room. I had one last month and I was in and out in 25 minutes. Thankfully mine have helped more often than not. Sometimes it made a drastic difference. They've never made the symptoms disappear but it would help them be manageable & oftentimes shorter duration. I’m lucky in that both my sleep specialist & my blood doctor are progressive thinking & willing to listen & work with me. My last infusion was around Christmas. I showed them some studies that recommend getting your ferritin between 300- 320 and they were very open to trying that. This made a HUGE difference in my augmentation. Best of luck & let us know how things go. (The results take a couple weeks)

No, not at all.

I have had four, and I just lay back and dozed. Delightful.

I had one infusion and everything was fine. The second experience went okay the first fifteen to twenty minutes until I began to feel weird like I was going to pass out. The nurses quickly came and took out the needle. I had to sit for another hour and a half before they would release me. No more infusions after that.

I had one last June and it was quite painless. No side effects or reaction. Unfortunately it didn't make a jot of difference to my restless legs. I do hope you have better luck. :)

Hi, I've had 2 sets of iron infusions in order to bring my stored iron levels to the normal range.

My first set was in 2016, 2 separate doses 1 week apart. No pain whatsoever other than the IV insertion.

After finding that my stored levels had dropped to critical levels I received my second round of iron infusions last March, 2019. Again this round consisted of 2 doses 1 week apart. No pain with the infusion.

It is a little freaky to watch the infusion drip into your vein. The infusion is a very dark brown, the color of very strong tea or weak coffee. No pain involved however.

Good luck to you.

Did bringing stored iron levels to normal end your RLS symptoms? If so, for how long before you had to have that second set of infusions?

I am taking iron tablets my levels are increasing last count was 62 not had it checked for about ten days there could be an improvement in my RLS Not sure yet fingers crossed.

Absolutely not!

Not painful at all, a little uncomfortable, my hand turned into a block of ice.

Most definitely without question or hesitation it absolutely helped my RLS is every way possible.

Did it help indefinitely, or only for a few months, or ....?

Hidden
Hidden

Hi,

so funny 12 replays but nobody has mentioned about this pain. If the IV leaks out from your vessel in to your under skin you will experience a visual pain every time you see your arm stained with permanent iron stain tattoo,

cheers

Tywiesz

Me No pain and no benefit.

One daughter had no pain and small effect

Other daughter had no pain and complete relief from all symptoms.

Note that doctor Buchfuhrer says there are only three types of injectant that will help RLS. I don't know why.

He said:

"You should also be aware that only certain iron formulations (INFeD and Injectafer) are beneficial for RLS patients. . Make sure your doctor understands this point." ( Doctor Buchfuhrer later added Feraheme to this list and explained that it was left out because it is more expensive and was in poor supply)

Injectafer is a ferric carboxymaltose injection.

INFeD is an iron dextran injection.

There are warnings that some products can cause an adverse anaphylaxis reaction and therefore you need to make sure that whoever is doing the infusion is equipped to handle this situation.

Very helpful to know only 3 iron formulations work. Please tell me who Dr. Buchfuhrer is and how I may contact him. Does he accept calls or emails from people who are not his clients? Where is he located and does he have office visits? Thanks in advance for your helpfulness. This is such a good forum--everyone so helpful.

Hi

I only know what I have gleaned from this forum and off the WWW.

Dr Buchfuhrer is a specialist who practises in Stanford California.

Stanford University School of Medicine, Stanford, CA, USA

He is among the leading experts on RLS.

Contact details.

stanfordhealthcare.org/doct... You can make an appointment on this web page

I don't know if he offers counseling remotely via phone or Skype.

I think his practice is at:

Sleep Medicine Center

450 Broadway Street

Pavilion B, 2nd Floor, MC 5730

Redwood City, CA 94063

Tel: 650-723-6601

You can send him an email at somno@verizon.net

He has a couple of publications to his name

Publications

Strategies for the Treatment of Restless Legs Syndrome

Buchfuhrer, M. J. (2012). Strategies for the Treatment of Restless Legs Syndrome. NEUROTHERAPEUTICS, 9(4), 776–790.

Contemporary Challenges and Strategies for Improving Outcomes for Patients With Restless Legs Syndrome

Buchfuhrer, M. J. (2012). Contemporary Challenges and Strategies for Improving Outcomes for Patients With Restless Legs Syndrome. AMERICAN JOURNAL OF MANAGED CARE, 18(12), S283–S290.

He was also on the International Restless Legs Syndrome Study Group Report with many other respected researchers in the field.

He apparently keeps in touch with researchers at Johns Hopkins Hospital in Baltimore so sometimes refers to information from them. He seems to be aware of the latest research available in some areas

Most importantly from our point of view is that he goes to extraordinary lengths to help people who are not necessarily paying patients. Many people on the forum have written to him to ask for advice and he usually replies after a very short time, about a week. I think it would be worth traveling a long way to get his advice.

I have seen a warning that he is a stickler for spelling and grammar so make your computer do a check for you. He is apparently upset by abbreviations as well so spell out words like Doctor in full.

I hope this helps you to make contact and get some relief.

I had two iron infusions and other than having the needle inserted there was no pain at all.

Those of you who've had iron infusions--do they last indefinitely, or only for a few months or so?

Well, my iron was very low, an infusion of the wrong type (Iron Sucrose) got me to a ferritin of 120 (after 8 weeks). I then continued with oral supplementation. My goal is to never get another infusion. I have proved that my body can absorb iron, it just needs to be non-heme, or Ferric Salts? I use Liquid Ferrous Sulfate and Vitamin C. (Probably more than necessary)

Not sure what "non-heme" means, and would like to know why you want to avoid that form of iron. I'm taking chelated ferrous bisglycinate, suggested by others in this forum. Thanks in advance for your answer.

I am not an expert, but I will try and explain it to you as it was explained to me. Heme iron is the kind you get in meat and plants. For most people it is more easy to absorb. (I have no idea why, every web site is different). For example.

differencebetween.com/diffe...

I have low stomach acid and I don't absorb the iron in food. After trying just about every iron supplement I could find, the doctor proscribed liquid ferrous sulfate. It worked and so, I am sticking with it. Although I have heard good thing about Chelated Ferrous Bisglycinate. Just make sure you 1) take enough, the recommendations are 65mg of elemental iron twice a day. 2) that you test after three to four months to make sure it is working.

BTW, I went from a ferritin of 120 to 273 in four months. (After my infusion).

HTH,

Widebody, thanks for the explanation. I, too, have low stomach acid simply due to aging.

You say the recommendations are for 65 mg elemental iron twice daily, and yet I've read on this forum to take the same amount every other day! How can I know which is accurate? Who is recommending twice daily? And for others reading this, who recommends every other day? Which really is better?

I think it depends, you need to test. In the beginning when my iron stores were low, I supplemented twice a day. 325mg of liquid ferrous sulfate. Then I started having issues with constipation. So I moved to 650mg once a day, but the results were so good, I am now down to 325mg once a day, and I fully expect to start every other day soon.

I'm a bit confused. You say recommendations are for 65 mg elemental iron twice daily, and yet you were taking 325 mg liquid ferrous sulfate twice a day. There's a big difference between 65 mg and 325 mg! Wasn't it dangerous to take so much? Please explain, because I hope to elevate my iron levels as you did. Also, you said the results were "so good." What good results did you get? Were you able to get off medications? That's my goal.

Different formulations of iron have a different amount of elemental iron, for example 325mg of ferrous sulfate has 65mg of elemental iron, 325mg of Ferrous Gluconate has 35mg of elemental iron, so it would be necessary to take more of the latter to get the same amount of iron. It should be on the label.

Hidden
Hidden

A note of interest. A preparation heme iron polypeptide is replacing iron infusion in the USA. The iron is absorbed in a different way than normal iron tablets. The product is Proferrin .

It may be on prescription but you can buy this supplement.

medicinenet.com/heme-iron-p...

Heatherlss
Heatherlss in reply to Hidden

Looks interesting. Have you tried this ?

Hidden
Hidden in reply to Heatherlss

No. I had anaemia and had iron injections in the butt and was fine. It depends on the reason for the iron deficiency. If it's celiac disease or thyroid disease reckon the heme iron polypeptide would be absorbed better. I never felt nauseous after iron injections as it goes directly into the blood without going through the liver. With some stomach and intestinal problems the iron is not readily absorbed. Perhaps you could ask nurse about iron injections to bypass the liver?

I am a patient of Dr. Buchfuhrer. I know that he has a presence in northern CA, but I believe that the normal place where he sees patients in person is in a suburb of Los Angeles. Here is where I go for my appointments:

11480 Brookshire Ave, Suite 108

Downey, CA 90241

Call (1 562) 904-1101 for appointments

The man is a medical saint, in my opinion.

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