Iron Infusion

[nosleep1969]

After years of RLS, several years of struggling on ropinerole, and the last 2 years on Neupro patches & Topiramate. Yesterday I was given my first Iron Infusion as a treatment option for RLS. There’s been lots of research by a Dr Earley at Johns Hopkins into an iron deficiency in the brain of RLS sufferers, iron tests will appear within normal ranges but infusions have been found to be an effective treatment option. My consultant has suggested there are 3 possible outcomes. Worst case scenario is I will only be able to be reduce my RLS medication, second option is I would need regular infusions as it has been shown that RLS sufferers lose iron at a faster rate so symptoms return 6-24 months after the infusion, third option is there is total reversal of the condition. I will be over the moon with option 2!

I have copied the link to the research below. It’s not working as a hyperlink in this forum for some reason so you will probably need to type it out but it’s well worth a read.

sleepreviewmag.com/sleep-di...

[SueJohnson]

What was your ferritin?

[nosleep1969 in reply to SueJohnson]

Hi Sue, my Ferritin was 112, iron was 13 & Transferrin Saturation was 20.5.

[SueJohnson in reply to nosleep1969]

I hate to disappoint you, but since it is over 100, it is unlikely to help you, but who knows, maybe it will.

[Graham3196 in reply to SueJohnson]

From what I have read some people get relief from RLS by an iron infusion but only after their ferritin lev el has reached more than 300 so nosleep1969 should be encouraged to try it. It seems to me that raising the ferritin level to 300 or even 350 should be the first treatment. It might give full relief to many and some relief to more than half of the patients that try it.

[SueJohnson in reply to Graham3196]

True, but I would modify it to say it might give full relief to some and some relief to some unless you have a source that says differently.

[SueJohnson]

Are you still on the neupro patch?

[nosleep1969]

I am still on the Neupro patch, I think it takes some time before levels are sufficiently high. If it doesn’t work I haven’t lost anything, I read from another sufferer that his was successful but took longer than the expected 12 weeks to take effect & that the aim was to increase the ferritin level to 350.

[DicCarlson]

Nice article, thanks. The "iron" question has interested me right along. I had severe RLS - wicked - no sleep - no doc help. But I did find this forum and knew not to take the DA the doc eventually offered ("It's the only thing that will help!"). I stumbled on Dr. Early and the Johns Hopkins website and the iron hypothesis. My ferritin was 49, % sat 20. Taking Ferrous Bisglycinate took away the severe symptoms almost immediately - in 3 months ferritin rose to 105 (2017). Still plagued with insomnia to this day. I attributed my iron deficiency to a head injury 8 months prior. I was treated with iron for growing pains as a child (<10 yrs.).

[CrusoeCortez in reply to DicCarlson]

I'm on Ropinerol and was getting augmentation. Ferritin also 49 (at last reading 15 months ago). Bisglycinate seems to be helping me too.Next step I need to have a proper chat with my GP and make a plan to get off the DAs.

[DicCarlson in reply to CrusoeCortez]

There's lots of good help here when you get a plan established. You will be better off after the DA elimination. Damn, maybe it is just the iron. Good luck!

[SueJohnson in reply to CrusoeCortez]

To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end.. But in the long run, you will be glad you came off it. On the gabapentin, beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed ropinirole at

Https://mayoclinicproceedings.org/a... You also should have your ferritin checked again as ir has been 15 months.

[Joolsg]

Hope it helps. But bear in mind that iron can only really help if you're not augmenting on the Neupro patch. I presume you need the infusion and topirimate because the patch isn't helping. Have you thought about getting off DAs?

[nosleep1969 in reply to Joolsg]

I am starting to augment as I did with the ropinerole. I have thought about it, and am hoping the infusion is my solution, I don’t sleep at all without meds.

[Joolsg in reply to nosleep1969]

I strongly recommend getting off the Patch. Augmentation never stops until you get off these drugs. It's scary but RLS is so much better once off them.So many people join this forum for that reason.

I did.

I am now in a much better place.

If you get off the patch you may find you are in the 60% who improve with iron infusions and you could be med free.

Look up the Mayo algorithm. DAs are no longer prescribed for a reason. Augmentation.

[nosleep1969 in reply to Joolsg]

I will, thanks.

[SueJohnson in reply to nosleep1969]

See my answer to CrusoeCortez.

[marsha2306]

Dr. Earley is my doctor and when my ferritin was 70 he prescribed an iron infusion. It did help for a while. It’s been about 4 or 5 years and my ferritin is back down again into the 70’s.. He will be scheduling another iron infusion.

[nosleep1969 in reply to marsha2306]

Would you mind giving me some information about how long it took for the infusion to take effect? I am currently on Neupro patches & topiramate, I really don’t know what to expect. My Ferritin was at 112.

[marsha2306 in reply to nosleep1969]

I’m not certain you would be given an iron infusion with ferritin of 112. Normally it is given if under 100.It took a few weeks to help.

[Hope61 in reply to marsha2306]

Lucky you to have him as your doctor. I could get in as they said he wasn't taking new patients

[marsha2306 in reply to Hope61]

I’ve been seeing him for 7 years already.

[Hope61]

Hi there I had an iron infusion 750 mg almost two weeks ago and have not noticed a change at all. I have blood work scheduled for 6 weeks after to see what my ferritin is then. Don't want to be a downer just my experience here in NY

[nosleep1969 in reply to Hope61]

I guess I’m going to have to be patient for quite some time then! I briefly saw an article that 2000 iu of vitamin D a day was recommended but I can’t find the article I saw, it was something about a vitamin D deficiency, which I also have. There is no one size fits all with this condition, we are all just hoping that we find something that works.

[Eryl]

The hypothesis than increasd iron helps with RLS is based on the hypothesis that rls is a dopamine deficiency issue but sugar promotes the release of dopamine therefore one would expect sugar to help with rls wheas may people have found sugar to be a trigger for rls. This indicates that rls has nothing to do with iron deficiency.Far more likely is that raised blood sugar causes inflammation of the nerves and that this inflammation causes hypersensitivity and that is the cause of rls. I have completely eliminated my rls without medication by avoiding inflammatory foods like refined sugar, refined starch and refined seed oils.

[nosleep1969 in reply to Eryl]

That sounds like quite a restrictive diet? Would you mind sharing a menu to give me an idea?

[Eryl in reply to nosleep1969]

Not particularly restrictive. I just eat real unprocessed food No artificially sweetened foods and no bread, cakes, cookies and I only use olive oil, coconut oil or animal fat for cooking. I also eat lots of darg leafy greens for the vitamins and minerals.

[nosleep1969]

And I take it, no alcohol? How long did it take for the symptoms to stop entirely when you changed your diet? How severe had your RLS been, & how long has you suffered from it?