Iron infusion: clarifying % of responders

[rls_optimist]

First, some good news: I am now 6 weeks past my iron infusion (1000 mg ferrous carboxymaltose, or InjectaFer, which raised my ferritin from 18 to 289). I am now getting significant reduction in my RLS symptoms. I now get complete control of my symptoms and sleep soundly through the night with about 30% less medication. I dropped my rotigotine patch from 3 to 2 mg, and my gabapentin from 2100 to 1500 mg. (I still take 5 mg methadone each evening, but may soon try dropping that as well.)

Now I want to address and hopefully clear up some confusion regarding how many of us are likely to benefit from IV iron therapy. I've seen numbers anywhere from 18% to 80%, with no evidence provided. So I went looking for some published evidence. I'm taking the following numbers from the excellent recent publication on iron therapy, written by several highly-regarded RLS experts:

sleep-journal.com/article/S...

The authors cite three class 1 studies (meaning well-designed, double-blind), all of which reported significant positive responses to IV infusions of ferrous carboxymaltose. (See section 5.3.1] Because these were all designed somewhat differently, with different end time points, the numbers vary somewhat. But here are the ranges reported among the three studies:

Complete remission (requiring no further RLS medication), IRLS score <=10: 30%, 38% at 4 and 6 weeks, and 25%, 38% at 20 and 30 weeks. (3rd study did not report on complete remission).

Partial responders (decrease in IRLS score by at least 40% - 50%): 37%, 45%, 60% from the 3 studies.

So as you can see, it's hard to cite just one number. But the results are definitely encouraging, and are backed up by good evidence. They did not find equally strong evidence for other iron infusion formulations, but they do report on them. So they reserve their highest recommendation for ferrous carboxymaltose (InjectaFer). (Note: the evidence for efficacy of oral iron therapy is less solid: there are no Class 1 studies supporting it. But the authors note that clinical experience supports its "probable efficacy".)

I hope these numbers, as well as my own positive results, might encourage some of you to have your ferritin levels checked and investigate the possibility of oral or IV iron therapy.

[PamK60]

Ty for info have a good day

[Hidden]

Good for you! Glad to hear your finding relief. RLS runs in my family and I totally agree that Iron could be a major culprit, particularly for woman. My Iron (Ferritin Level's) are always 'low'. With a high Iron diet and supplementation I can get mine to just over 50 but so hard to get it to where I want it, about 100. My concern with my iron happened when I noted hair thinning a bit at about 42 and a dermatologist said that when the body is low iron the first thing that happens is hair stops growing as the Iron is required for vital body functions and hair growth is not vital. Years later I'm still eating high iron diet (I get 140% of my iron from food) + Supplement but have not found permanent/consistent relief from my RLS. Does Iron have to be very low to get an Infusion? I'd love to try and does your iron level stay there once infused? I chose to be drug - free and just use natural methods to manage mine. Thank you!

[rls_optimist in reply to Hidden]

According to the article whose link I included in my post above, you don't need to have a very low ferritin level to be considered for IV iron infusion. However, your doctor may need some convincing, since many doctors aren't very familiar with the need for higher iron levels in people with RLS. It may be helpful to share that link with your doctor, if need be.

The front page lists the following Highlights:

•Iron treatments should be considered for all RLS patients.

•Morning, fasting serum iron, ferritin, TIBC and %TSAT should be obtained.

•No iron treatment should be used if %TSAT >45.

•Oral iron treatment if tolerated and safe should be considered for ferritin ≤75 μg/l.

•Consider IV iron when oral iron is not appropriate provided ferritin ≤100 μg/l.

It really is worth reading the article. In the body of it, they amplify on that last point: oral iron is "not appropriate", meaning if it cannot be tolerated or if it does not provide any relief from RLS symptoms.

[Graham3196 in reply to rls_optimist]

This is sounding very encouraging.

Doctor Buchfuhrer seems to be well accepted as one of the experts on RLS. The following is based on statements I have read from him.

My understanding is that oral iron is not able to raise your ferritin to the recommended 300 to 350 range in a practical time scale.

If your ferritin level drops off with time your medical expert should go looking for a reason for the loss which is commonly a blood leakage somewhere internally.

After an iron infusion it may take up to 12 weeks to be fully effective although some people find an immediate improvement.

[rls_optimist in reply to Graham3196]

Well said. I agree with all your points. Regarding dropping ferritin levels in people with RLS, though, some experts say that sometimes a specific cause (like internal bleeding) cannot be found. Certainly, we should make sure to be checked for internal bleeding or other causes. But they may not find a clear cause like that.

[Hidden in reply to rls_optimist]

I find this very interesting. I tried going to the walk in clinic and the Dr was beyond condescending. She told me to stretch and take Tylenol. I told her about the study and she made it very clear she wasn't listening "I dont know that study" "Iron infusions are invasive" I love how Dr's would rather jack me up on Opioids then a respect my choice to figure it out (as best I can) and using natural methods. My Dr tried to get me on Anti Depressants (WHAT!!) forget it. LOL

[involuntarydancer]

Thank you so much. This is really useful information.

[Parminter]

At what stage after the infusion did you begin to feel distinct relief?

[rls_optimist in reply to Parminter]

At nearly 6 weeks. Definitely not at the 4-week point that is often cited. As Graham said, it may take up to 12 weeks to take full effect. One of the three main Class 1 studies of ferrous carboxymaltose cited in that Sleep Medicine article reported that 12-week figure. That study specifically focused on subjects with very low ferritin levels, unlike the other two. I guess it makes sense that it would take longer for those people. I will issue more updates if I notice further abatement of symptoms, and also at the 12-week point regardless.

[Parminter in reply to rls_optimist]

Thank you, Optimist, there is nothing like first-hand information.

[rkatt]

Like the sound of this. Are you in the U.K.? Was the infusion okayed by a neurologist who specialises in RLS? Thanks for the information! I’m worried it might be hard to prise out of the clutches of the NHS. But I’m getting a rush of optimism myself.

[rls_optimist in reply to rkatt]

No, I'm across the pond, in Boston. My neurologist did approve this. But to get it done, a hematologist gets involved. Unfortunately, my hematologist had little experience with RLS. But fortunately, he was very receptive to new information, so I sent him the link to that Sleep Medicine article on iron therapy for RLS. Based on that, he directed their formulary to order and use the ferrous carboxymaltose (InjectaFer) which that paper most strongly recommended. (By the way, InjectaFer is one of the safest of the lot.)

[rkatt in reply to rls_optimist]

Thanks. I’m seeing a neurologist sometime soon (waiting for the appointment) and your information will be very useful. I’ll go armed, but not in the military sense, though I’ve been tempted, but with facts and printouts and informed suggestions. I also want to float the idea of Naxalone, which I hear helps some people. She’s an upbeat type and inclined towards helpfulness so, stupidly I’m sure, I’m in a tiny way hopeful.

[rls_optimist in reply to rkatt]

Do you mean LDN (low dose naloxone)? Whether low dose or not, just be aware that it will interfere with any opioid (including Kratom) that you may also be taking for your RLS. It blocks opioid receptors. However, some forum members have reported that they are able to take both an opioid and LDN, so long as they are separated by several hours. For instance, one might take the opioid in the evening, and LDN in the morning. In any case, let us know how things turn out for you. Good luck!

[rkatt in reply to rls_optimist]

Thanks again. Yes, I did mean LDN. I didn't know about a possible clash with opiates. I'll certainly have to bear that in mind because I take Tramadol, which I find very helpful However my doctor will only part with 6 a month, largely because of wider policy on Michael Jackson type drugs. I'll have to talk things over with my neurologist when I finally see her 'towards the end of the year'. But before that I want to think things out, formulate a strategy, what to ask for. She's a lovely person, but isn't an RLS expert.

[rls_optimist in reply to rkatt]

So, I should explain a little more. Naloxone (brand name Narcan) is an "opioid antagonist". It is used to counter the effects of opioid overdose. EMTs and police have it on hand so that when they encounter a person who has overdosed, they can inject it onsite. It has been credited with saving thousands of lives.

So even though LDN is a much lower dose of that medication, it still has the same blocking effect on opioid receptors in the brain. I don't know if it would specifically interfere with Tramadol, but I would guess that it likely would, if taken at or near the same time as you take the Tramadol.

It might be worth experimenting with, however. Again, if you take Tramadol in the evening and LDN in the morning, that might provide enough separation in time to avoid the interference. Good luck with your neurologist. The fact that she is a nice person may go a long way. She may be willing to work with you, if you bring in some published evidence to support your strategy, when you have that worked out. I was lucky to connect to a wonderful neurologist (who also does know a lot about RLS) and a receptive hematologist (who does not). Both have shown great willingness to work with me, when I made it clear that I knew what I was talking about, and could provide links to relevant publications. (In particular, I gave the hematologist a link to the recent gold-standard publication on iron treatment for RLS, which prompted him to follow the advice in that paper and order ferrous carboxymaltose ofr my iron infusion. That was the formulation for which there was most evidence, and the best safety profile.) Good luck!

[LotteM in reply to rls_optimist]

Hi rls_optimist and rkatt. I take a combination of an opioid (Targinact, i.e. oxycodon ER and naloxone) and LDN (low dose NALTREXONE).

Naloxone is added to the oxycodon ER to help against obstipation. Naltrexone was originally used to help against the addictive, ‘craving’ part of opioid addiction. But it had too many negative side effects. The low doses (1.5-4.5mg) are thought to block the opioid receptors temporarily and then elicit an increase in endorphines that will last the rest of the day (24h period).

I initially took LDN in the morning, to avoid potential interaction with te oxycodon. Recently, because I had the feeling my morning tiredness might result from this morning LDN dose (1.5 mg), I switched to taking it before bed. That is some 3h after taking my daily Targinact dose (of 5mg). Amazingly enough, my legs remained quite calm, I have been sleeping quite well and I feel a little better in the mornings.

Take home message: experiment as WAAD.

[rkatt in reply to LotteM]

Thanks. That’s so interesting, and important to know. I’ve experienced a growing optimism recently that there might be life after Pramipexole.

[rls_optimist in reply to LotteM]

Hi, Lotte, thanks for the correction. You're quite right: I was confusing those two drugs. Interestingly, both naloxone and naltrexone are both opioid receptor inhibitors. I just read up on this, and found out that when they made Targinact, they came up with a way to restrict naloxone's opioid antagonist effect to the opioid receptors in the intestinal lining. This allowed them to help counteract oxycodone's constipation effect without reducing its efficacy. Pretty neat!

I'm very glad to hear that by separating your Terginact from the LDN by 3 hours, you get the benefits of both without interference. I haven't tried LDN yet, but if I do, I will try your technique to see if I can avoid interference with my methadone dose.

By the way, how did you obtain your LDN? I assume it requires a prescription? Was it from your GP?

[LotteM in reply to rls_optimist]

Hi rls_optimist. Now it’s my turn to thank you for the clarification about naloxone’s working in the intestines only. Interesting!

I get my LDN by prescription. Not through my gp, but through a special doctor, who is trained as an MD, but then specified himself in ‘alternative medicines’, including for example orthomolecular, bioresonance, and other ‘holistic’ approaches. Note: I live in The Netherlands.

Other people on this forum have bought naltrexone on te internet and dissolved and diluted it themselves following directions on websites. Don’t know which ones. Involuntarydancer has applied this approach, I think. ID, can you chime in?

[RLSgirl]

Thanks so much for your report. and for all the information!

[RLSdaily]

So I have have taken oral iron and been told my level was 88 and was fine ( told by my neurologist and gyn) I went to see a oncologist/ hematologist (for a preventive screen based on family history) and we talked medicine and how mirapex was awful and I was taking iron and I said my levels were fine.

Well she checked and my stores are extremely low. Sooooo I am going to have an iron infusion. I am hopeful, will update later.

[rls_optimist in reply to RLSdaily]

How odd. Were both of those reporting ferritin levels? If so, it's puzzling that the two test results were so different. You should ask for the test results themselves, so you can see for yourself and not have to rely on someone's verbal report.

[RLSdaily in reply to rls_optimist]

The doctors were reading two separate tests. One the iron and one the iron stores. I have a printed copy. My point was things look different to different doctors and I am excited to see if the infusion will give some relief as the oral iron taken every other day as offered no change

[rls_optimist]

Oh, bother! That is supposed to be 30%! I've just edited my post to reflect that. Thanks for alerting me to that error. And yes, the calculation comes from my meds reduction, which I specified in my post.

I did not get any permanent stain from the injection.

[Jakba2003]

This treatment is deadline for someone who is also Hemochromotosis lie myself.

[Graham3196]

The 80% "cure" rate you mention probably comes for the following quote from Doctor Buchfuhrer

"What the guys at Hopkins did, they gave iron intravenously usually about 2 or 3 or 4 series of infusions of this iron, and they got the levels around 200 well low and behold about 80+% of the patients all of the sudden had their RLS symptoms completely vanish. They could drop all their medication and these were severe patients for the most part. They dropped all their medications; they felt great. They said 'my RLS is cured.' Anyway, very interestingly,. 6 months to maybe 2 years later, these patients started calling back saying, 'my RLS is coming back, what's going on?' So they brought them back to Hopkins and rechecked their serum ferritin a and their CSF ferritin, the ferritins around their brain and low and behold these guys were again low on ferritin. Now typically when we get someone with iron deficiency, anemia or not, and we tank them up full of iron, and typically this will be someone who has like a bleeding ulcer or women with heavy menstrual period or God knows what, who get low on iron, once we tank them up unless they bleed again, they're good for life. So this was very perplexing. And now what we believe is that the REAL defect in restless leg syndrome May in fact be a leeching out of iron faster than normal. We all lose a little iron every day but we get it back in our diet, very, very easily. We feel that restless legs patients are losing it much faster, so the normal diet doesn't come close to replacing it. And at least the guys at Hopkins postulate that the genetic defect may be something to do with iron metabolism and that RLS is only secondary to that. "

[rls_optimist in reply to Graham3196]

Thanks for this, Graham. Yes, this quote may be where I saw the 80% figure. In addition, I'm sure this is where I had read that many of us continually lose iron faster than people without RLS, with no obvious cause like internal bleeding. My gut feeling is that if they can find the root cause of that, and figure out how to treat it, then RLS may become a thing of the past.

[Graham3196 in reply to rls_optimist]

It would be almost funny if they found we are missing some hormone that we can get with a pill or a nasal spray once a day!!