To Infuse or not to Infuse: I figured... - Restless Legs Syn...

Restless Legs Syndrome

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To Infuse or not to Infuse

6 months ago•15 Replies

I figured it was time to put the 45 infusion stories I could find all together so people can make an informed decision. Simply tap on the link and within a few lines you will know whether the person gave it a thumbs up or down. If you read the replies you may find more stories.

I welcome anyone who could add other stories that I may have missed. I put the word “infusion” in the search box and simply copied links with actual stories and left out mere inquiries. It may be worthwhile, and actually quite important, to tap on the person’s name and see where they are today, especially if from an older post:

healthunlocked.com/rlsuk/po...

daisydaisy 10 days ago

I definitely see an improvement in my mom’s RLS after an infusion. And her ferritin was around 90 before it. She is still on pramipexole plus neurontine.

healthunlocked.com/user/Ede... (Free from RLS for a month after infusion)

healthunlocked.com/rlsuk/po...

Hope61 1 year ago

I think I am in the 30 % that does not respond to Iv iron. I had (about Two months ago) a treatment and it didn’t change anything. Once again my levels have dropped below 100 in ferritin but my symptoms are the same no matter if I’m above or below 100

healthunlocked.com/rlsuk/po...

K2D2 1 year ago

Unfortunately, an iron infusion did not help me. However, Gabapentin has been the solution I needed. I take 300 mg each at 4 pm, 6 pm and 8 pm nightly and it has alleviated my restless legs. Wishing you all the best.

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po....

healthunlocked.com/rlsuk/po...

loveSinai 3 years ago

Had a ferritin infusion (intravenous) July 21. Now is exactly 2 months later......and restless legs persist but have gotten slowly better. My Ferritin has increased from 20+ to 200+. Not sure how long it would take to eliminate the restless legs but COULD NOT TAKE iron pills - got horrible constipation.... after about a week of daily dosing. ...

healthunlocked.com/rlsuk/po... (This is scary but sounds limited to Injectafer)

Grandmagoose 3 years ago

Hi grand piano man. I augmented out of Pramipexole after about four years. Prior to that I was miserable for years.. I saw dr Buchfuhrer in January of this year and he took me off my pramipexole cold turkey and started me on Methadone 10 mg before bedtime. It took several months but I am able to sleep pretty well most nights. I also had iron infusions in June...and my Ferritin level is know over 800. I had hoped it would make a big difference in my RLS ( like go away) but haven’t really noticed any big improvements. I now try to stay up until I can hardly keep my eyes open and fall asleep quickly but still sometimes wake up 1–2 hours after bed with pain. I think my posture may have an effect... such as holding my phone and reading can aggravate it... so yes movement can help. And yes, Methadone has made me so sleepy during the day. I was never one to nap but now can hardly wait to lie down and sleep after lunch or before. Luckily I am now retired. Sometimes I try to decrease my dose to 7.5 mg but that doesn’t work more than a night. Maybe after that 3 month mark I will tell a difference with the iron infusion... coming up soon. Thank you for your words... Graham... are you out there? You had written me to let you know how I was doing if and after my iron infusion happened!

healthunlocked.com/rlsuk/po...

Docker 4 years ago

I get severely bad rls in my legs, arms and hands and sometimes, when I'm really bad, in my face.I've tried everything sports massage, diet change, acupuncture, countless drugs (pain killers, nerve blockers, dopamine agonists), iron infusions. The only things I've found that work are cannabis, in small amounts. Or an iron infusion that gives relief for months. Notes on iron infusion... My ferritin level was 104 and 108.I believe the range goes 1 up to 500. I've heard of people having as low as 4.. !After having an iron infusion my level went up to 354. Giving me complete relief for me symptoms.

healthunlocked.com/rlsuk/po....

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po....

healthunlocked.com/rlsuk/po...

jonjo 6 years ago

I have rls and initially was on Clonazapan and it worked fantastic for 2years then I needed to increase dosage so my doctor said it' time to try something else. I tried a couple and Gabaten didn't help at all. I have had iron infusions as I was short of iron and can't take it in the tablet or medicine form. I was hoping it would settle the rls but unfortunately it hasn't helped either. I am on Pramipexole and touch wood that helps if I take two. I started on one but it wasn't long before I had to move on to two.I hope these Pramipexole keep it at bay because I can't manage without something as I become really agitated and can't be still so I am running round the flat like some who is mad. Hope this helps and hope they find a cure soon so we can all get some sleep and lead normal lives. When you say you have restless legs people think that you are tired and your legs just ache. They don't realise how horrible it is. Last week I thought I had taken the tablets but then later I thought that I hadn't . I dare not take any more and so never slept all night just walking up and down. It nearly drives you mad.

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po... (I am on the fence about this one because she was taking less Gabapentin and less iron before the infusion with complete relief)

I counted 4 or 5 people who had a very good response to the infusion for at least 4 months. This included one person who cut their Neupro patch in half and another who cut their Gabapentin in half. If the person had to stay on the DAs and could not withdraw I did not count these people even if they felt the DAs now worked better and there were two like this. Nor did I count people who had some relief for two to four weeks. Essentially, 10% of the people in this analysis had worthwhile results. No where near the 60% that is touted on here and 50%+ that the Mayo Clinic claims.

The problem is that the Mayo Clinic and RLS experts rely on studies like the one below where the researcher claims “significant” results. So in this recent study, the participants at baseline (called t0) had an average IRLS score that was at the highest end of severe at 29.7. At six weeks follow-up (called t1) the score dropped to 19.5 which is essentially the highest end of moderate. At 24 weeks (t2) the scores were inching back up to 21.3 which is severe. I don’t know about you, but at the high end of moderate I’m still gonna be quite miserable. Maybe I get two hours of sleep instead of one? Yet the researcher indicates there was significant improvement??? And so it goes. All those high moderates are part of the successful 60%. Not in MY book. pubmed.ncbi.nlm.nih.gov/372...

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DesertOasis

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Joolsg6 months ago

Now I understand why you were asking about the people who are RLS free.Veronal is one of them after an iron infusion & reducing anti depressants. She doesn't post any more.

The other is a woman I know outside the forum who was on Pramipexole for 10 years, then Targinact for 5. She reduced the targinact, had an iron infusion and her RLS is greatly reduced. She doesn't take meds and her RLS is around 90% controlled.

Kakally controls her RLS with iron infusions and a very small dose of Pramipexole.

I agree with you though.

Unless the iron infusion reduces RLS to maybe once or twice a month, I wouldn't call it a dramatic improvement.

Well done for compiling the list.

DesertOasis in reply to Joolsg6 months ago

We have no choice. We can’t just rely on the medical community to always provide valid answers and explanations. We have to look to our own collective experience. For the past year or so I noticed a frightening trend. You say if we hadn’t been prescribed DAs, and instead infusions, a lot of us would be fine today. I’m beginning to think the main culprit is SSRIs, which exploded on the scene about 30 years ago, and are still going strong. Followed by HRT. People with little to no RLS are turned into zombies overnight. They’re prescribed DAs and you know the rest of that story, all too well. Sooo, iron really isn’t these people’s problem. And in many cases they have very healthy stores. We need to find a way to up-regulate the RLS dopamine receptors. I’m thinking some combination of magnesium, berberine and fasting? People can start on these things before, during and after withdrawal from the DAs.

restlegs1 in reply to DesertOasis6 months ago

A sleep and respiratory specialist I saw recently thinks that COVID is a major reason why RLS has appeared recently and/or gotten worse symptom-wise in many people, particularly in those who have Long COVID. When I asked him why my RLS symptoms had gotten so much worse about 2 months ago, he asked if I had had COVID, I said yes, and he shrugged and said "There you are". He says COVID is a particularly nasty virus that gets into the brain and causes dreadful neurological changes in some people. Just thought I would add that in because it is interesting. His main research interest now is Long COVID.

DesertOasis in reply to restlegs16 months ago

Hi Restless, I believe the same happened to me. I feel my RLS has been worse since Covid and had to up my iron intake. Nasty virus!

DesertOasis6 months ago

Here’s one that’s thumbs up healthunlocked.com/rlsuk/po...

Jumpey6 months ago

Thanks for your hard work.

DesertOasis in reply to Jumpey6 months ago

Was nothing, kind of 😵‍💫

WideBody6 months ago

not sure if you had me, an infusion was 100 percent the best thing I ever did for my RLS.

DesertOasis in reply to WideBody6 months ago

That’s because you were augmenting and your ferritin was way low. There are studies that indicate infusions quickly lessen augmentation in people with LOW iron stores. I accept infusions for this purpose only. You are living proof. As you know, you got your ferritin up to 200, via oral iron, over a year before the infusion and it did nothing for your RLS.

DesertOasis in reply to WideBody6 months ago

Here is a very succinct article, on point with your previous situation. And, what I find really interesting is the type of iron they used - ferric gluconate. Theoretically, that form of iron should readily cross the blood brain barrier. Maybe that’s why these three patients had “near immediate relief” from their augmentation symptoms? Not their regular RLS symptoms! They didn’t have to wait weeks and months for that alleged “spill-over” into the brain effect that sometimes happens with other forms of IV iron and sometimes not 🙄

AND, it seems the researchers are aware of this BBB crossing ability. Patients were given 125mg at a time. Should the RLS experts be looking closer at this form?

“Patients received IV infusion of 2–4 courses of 125 mg ferric gluconate, with medication status preinfusion and postinfusion remaining constant, resulting in near-immediate relief from their augmentation symptoms”

ncbi.nlm.nih.gov/pmc/articl...

I unquestionably accept the validity of IV iron for symptoms of augmentation, especially when ferritin is very low and especially when this form of iron is used. I don’t expect it to do much for non-augmentation RLS symptoms

WideBody in reply to DesertOasis6 months ago

I had iron sucrose which is not the best for RLS, iron gluconate isn’t either.

Iron dextran and injectafer, are the preferable choices for RLS.

From my favorite source

IV iron bypasses the gastrointestinal-based regulation of oral iron absorption. Iron given intravenously is taken up predominately by the erythron, liver and macrophages [43]. As the macrophages are the primary source of redistributing iron to the other organs [17], including brain, the amount of iron taken up by the macrophages during the initial iron loading period may be relevant in determining when and/or how much iron reaches the brain. There are differences in the uptake of the different IV formulations by the macrophages [44], as well as different rates at which the iron is released from the carrier carbohydrate into the blood. Those with faster release (iron sucrose and iron gluconate) require administration at lower doses in order to avoid overwhelming available transferrin, and thereby producing excessive, and toxic, free or labile iron. The lower doses are repeated over several days to obtain the desired total dose. Conversely, compounds that release iron more slowly over many hours (low molecular weight iron dextran, ferric carboxymaltose, ferumoxytol, and iron isomaltoside) allow more iron to be taken up by transferrin, and produce less labile iron (Fig. 2). The slow-release compounds also show greater increases in macrophage iron concentrations compared to the fast-release compounds [44]. The slow-release compounds can be given in one or two repeated administrations (see Table 1 for a list of available IV iron formulations and their basic characteristics).

Amrob6 months ago

Thank you for compiling this list.

Personally, i don't understand why anyone wouldn't have an iron infusion to see if it helps them (except in the case of conditions such as hemochromatosis). The risk of an anaphylactic reaction is extremely low and in the rare event it happens, nurses are on hand to administer medication to reverse it.

This is coming from someone who has had approximately five iron infusions.

Even though I experienced hypophosphatemia after my last infusion, and wouldn't be inclined to have another given the minimal benefits I obtain, I'd still recommend an iron infusion to someone who hasn't yet tried it.

Hypophosphatemia seems to be more likely the greater the number of iron infusions that one has. And if it's a concern, the risk of hypophosphatemia can be mitigated by having the iron administered at a lower dose, or spread out over two to four sessions.

DesertOasis in reply to Amrob6 months ago

I’m a risk reward type person. Especially for people in the UK, it seems you guys have to see 5 doctors, visit 4 clinics before someone will even ponder giving you an infusion. Only, inevitably, to say no. Then you have to go private, which still requires a hunt, and then pay out of pocket about $800.

No matter what, even if some iron gets shoved into the brain, it’s not hanging around for long. It will get used up and not replaced.

The numbers just don’t add up Amrob. See my new post from 5 minutes ago .

Amrob in reply to DesertOasis6 months ago

I'm in Australia and have never had any problems getting an iron infusion. And the cost is so minimal that i can barely recall it ( around $100 or possibly free).

I have read of loads of people who have had success with an iron infusion. I have also read of loads of people (myself included) who have tried oral iron at night and it doesn't do a thing.

I try not to be too prescriptive about what works and what doesn't, because i know that what works for me, won't necessarily work for the next person and vice versa.

DesertOasis in reply to Amrob6 months ago

That’s why I did the analysis. So it doesn’t come down to one person’s opinion. Now it comes down to our collective experience. The iron at night trick is less effective with abnormal high ferritin levels. It’s also probably completely ineffective for a good while after an infusion. Just too darn much hepcidin floating around post-infusion. Nor will the iron provide significant relief if you’re on SSRIs or HRT or calcium channel blockers. Nor will it provide significant relief when first off the DAs. It’s more likely to provide relief while still on the DAs.