Iron Injections

[wickedrls]

Does anyone know the effectiveness of iron injections to help with RLS when all other medications have failed? My saturated iron level is low although the ferritin level, while normal is on the low normal side.

[Hidden]

Hi, I'm assuming you're referring to IV iron infusions rather than intrammuscular injections.

There's no absolute guarantee that they will work, but there is a good chance they will.

A "normal" ferritin level is anything above 15ug/L.

However for someone with RLS anything below 100ug/L suggests that insufficient iron is getting into the brain across the blood brain barrier. This is a known problem for people with RLS.

There is evidence that raising the ferritin level to at least 100ug/L will improve symptoms in 50% of RLS sufferers.

This means that 50% of sufferers won't benefit.

However, some RLS experts apparently say that ferritin needs to be at least 300ug/L. In which case, if the IV iron infusion raises your ferritin to this level then the chances of it working for you would seem good.

You need to know the number, "low normal" is meaningless for someone with RLS

Your iron deficiency may only be one factor in your RLS however, you also have to think why you have this iron deficiency. You may therefore wish to explore other non-pharmacological measures for RLS.

[wickedrls in reply to Hidden]

I am referring to IV iron infusions. My iron saturation level at 13 is "low" given the reference range of (20-55). My ferritin level is 68 -- reference level (11-307). My iron level is 48 -- reference level (35-150). what are the other the non-pharmacological measures for RLS are you suggesting I explore?

[Hidden in reply to wickedrls]

Hi, thanks for the further information. I'd say you would benefit from iron infusions if you can get them.

I appreciate that iron supplements can cause intestinal problems. Have you tried a gentle" iron supplement? This is better tolerated. It's also better to take it once every 2 days, not every day.

If you have any deficiency in magnesium, vitamin B12 or vitamin D, then taking supplements in these can improve symptoms.

Are you taking any medications for any other health condition? There are a lot of medicines that make RLS worse.

There seems to be emerging evidence that chronic subclinical inflammation is a mediating factor in RLS. It does sound as if you may be "sensitive" to quite a few things and allergies involve an inflammatory response.

There's no guarantee of success for this, but diet, in your case, may possibly help you to reduce any inflammation.

Do you suffer intestinal problems? If you are gluten or lactose intolerant then cutting out these woild reduce inflammation. Lactose is used as an "excipient" in many medications e.g. gabapentin.

Cutting out added sugar or anything with simple sugar or refined csrbohydrate would be beneficial. These contribute to other health issues as well, heart disease, cancer, diabetes etc.

An anti-inflammatory (mediterranean) diet may help. There are also some herbal remedies that have anti-inflammatory or anti-oxidant properties. I believe celery juice (tablets) is one, curcumin is another.

It may be a matter of trial and error with such things and unlike medications any improvement cannot be expected immediately or completely.

However, it's worth trying as in your case inflammatiom seems to be a factor.

[CoMtWo]

Have you tried iron supplements vs. the infusion? I was able to "up" my iron from 53 to 169 (the 53 by my medical lab's range of "normal" was "normal, but near the lower end). Combining that and Horizant (gabapentin encarnabil) has been a lifesaver for me. I take 350 mg ferrous sulfate and 250 mg ascorbic acid (Vitamin C) nightly, after my 5pm Horizant. Things have never been better, having suffered from this horrid disease for 20+ years - now after 1 year on Horizant/iron/C, I'm 90-95% symptom free.

[wickedrls in reply to CoMtWo]

thank you for your suggestion, however, taking oral supplements of iron causes diarrhea and i am unable to take gabepentin or any derivation. i have had RLS for 58 years and it's pure hell. i have tried all prescribed medications and am allergic to all of them including marijuana cbd.

[BAB97TIE in reply to CoMtWo]

Hi

Could you please tell me how you found your doctor who put you on the Horizant and vitamin supplements. I can't find any doctor in my area who seems to know much about RLS. They just want me to take Requip which really scares me.

Thanks

[wickedrls in reply to BAB97TIE]

my doctor was a neurologist at ucla -- alon avidan but i don't think it's uncommon to find one. it was a useless drug in my case.

[BAB97TIE in reply to wickedrls]

Thank you very much. I will try to find a neurologist.

[Alc71]

I've never had iron injections, however I've had iron infusions and they made a drastic improvement to my restless legs

[wickedrls in reply to Alc71]

what is the difference between the two?

[Alc71 in reply to wickedrls]

I don't know where you are based. I'm in the UK and was told that iron can't be injected as your body would react badly, an infusion is given slowly over several hours. It may be different elsewhere

[silkyreg]

I talked with my doc about infusions, as my neurologist suggested them, and he went furious cause they are so dangerous that people can die. I have the same problem with diarrhea when I took Ferrosanol pills and he prescribed a different medication.

[Hidden in reply to silkyreg]

Going furious is probably an over reaction. There are, it's true, risks with iron infusions e.g. iron overload and allergic reactions, but it depends on which particular product is used and on careful monitoring.

People with severe iron deficiency might die if they don't get an infusion!

Prescription iron supplements are stronger than over the counter versions. If you suffer iron deficiency anaemia, the prescription version will be most helpful.

However, with RLS where there is no anaemia, very little of the iron will be absorbed as it will be inhibited by a hormone - hepcidin. This is why iron infusions may be desirsble as they bypass the intestine.

The strong prescription iron is also more likely to cause gastrointestinal upset.

Better to take a "gentle" iron and also take it every other day, NOT daily. Doing this actually increases how much is absorbed and is also reduces gastrointestinal problems.

I'm afraid if you're in the UK doctors aren't allowed to give a prescription for an over the counter iron supplement. Any iron they prescribe is unnecessarily too strong.

[Alc71 in reply to silkyreg]

I've had iron infusions and the first time was monitored closely. Any signs of reaction and they stop or slow it down. Fortunately I was fine, but completely changed my life from can hardly get out of bed to being completely normal.

[Shumbah]

Both my daughter and I had iron infusion for RLS

My daughter has had complete relief

It did not help mine RLS at all .

[wickedrls in reply to Shumbah]

sorry to hear that -- was there any difference between the two procedures?

[dorissweda]

I had a series of 5 iron infusions with mixedresults. I was severely constipated for months and because I have a prolapsed bladdder that was extremely difficult. It seemed like they gave me much more iron than my body could absorb and utilize at one time. Two of my major issues did resolve. Ihe twitching in my legs that I had day and night went away and I was able to sleep. I hadn't been able to sleep for years even with medication. As for the RLS, if I still had symptoms, I slept through them. Unfortunately, the beneficial effects only lasted about 3 months and since my doctors won't try to find out why I can't absorb the iron from food or oral supplements, I may need to repeat the infusions. At this point, I'm not sure I can deal with those side effects again. But this is the marvelous healthcare system in America. Everything is about money.

[wickedrls in reply to dorissweda]

i'm sorry to hear this. what were the side effects from infusion?

[AnnMB]

I had my first iron infusion a few weeks ago and unfortunately had no affect on my RLS which was disappointing and quite expensive for me.

[WideBody]

An iron infusion saved my life. If your TSAT, Transferrin Saturation Percentage is below 20%, despite your ferritin level you are classified as Iron Deficiency without anemia.

I am betting the iron infusion will help you with more than just your RLS. Energy level, fingernails and even hair requires iron.

Do it! the benefits are amazing. I should warn you, brace yourself, it took me about 3-6 months of ups and downs. (It's working, oh crap it will never work, it's working, it will never work). It does get better over time.

BTW, my RLS was 24/7 until the infusion. It is now only about 10-20 minutes of jerking when I go to bed. I got my infusion in August of last year, I believe I am still getting better.

After your infusion, the recommendation is to wait 8 weeks to re-test your iron levels. If you do it sooner your iron levels will be falsely elevated. (TSAT and a few others will still be elevated).

Then start right away with supplemental iron. The only iron I have found that works for me is liquid ferrous sulfate. I just recently tried ferrous sulfate pills for a month (I was traveling), I am so happy to be home and back to real liquid ferrous sulfate.

This is the BEST paper of dealing with iron and RLS

sciencedirect.com/science/a...

Read it like a love letter, it pays off.

Also, just do what Manerva says. He's the best!

BTW, please report back here with your results. I am interested.

Also, the two best iron formulations to use are Injectafer and Iron Dextran. I got Iron Sucrose, it still helps, but not as effective.