Finally help.. 🎉

[Docker]

Hi all.

I have been a sufferer of restless legs syndrome for the last 4 years. Suffering with pain / discomfort in my legs and arms and face 24 hours a day 7 days a week. Hell on earth..

Over the last 3 years I've been searching for a cure or even just relief. I've tried all sorts of diets (cutting out everything) , taking vitamin supplements, massage and acupuncture, painkillers, muscle relaxants (antidepressants), dopamine agonists, two neurologist, one legs vascular specialist, even a tropical disease specialist. You name it I've tried it.

After reading an article on the internet about iron levels in rls I've recently had an iron infusion.

Two days after having the procedure my rls has all but gone (total life saver!) Supposedly this iron infusion releaf can last 6 to 12 months. 🙏

Three weeks on and I'm still pain-free and my ferritin levels had gone up from 105-108 up to 354..🎉

I know this is not a cure for everybody. But if it help one person it's worthwhile.

As a side note

My neurologist advised my that i should come off any dopamine agonists as they in time will burn out my dopamine receptors.. Leaving my body with no chance of recovery..

'Thinking of everyone out there living with rls. We will keep battling on.'

Regards

Peter.

[Lapsedrunner]

Thanks for posting, that’s great news, long may it help!

[DicCarlson]

Awesome! Enjoy the relief! Why were you iron deficient in the first place? And really - it's iron IN THE BRAIN causing the dopamine dysfunction and the RLS, why oh why?

[LotteM]

Thank you for your story. One more to show that ferritin levels of over 75 often are still mot high enough. As is said on the IRLSSG paper on iron and RLS.

Where are you based? I am in NL and my neurologist is currently looking into whether she can get an infusion organised for me. Not easy, because far from standard. Most people on here are from the UK and they get stonewalled when it comes to an iron infusion - unless you’re really anaemic.

Hope your relief lasts!

[Docker in reply to LotteM]

Hi LotteM,

I'm in the UK based near Skipton. My doctor has aways been up to trying anything I suggest. Even when I told him that I was taking cannabis fudge to combat the pain he was OK with that..

(note cannabis fudge. I was taking only a 5 to 8mm piece. Which stopped the pain but didn't leave feeling anything else / stoned. I tried cbd oil and it didn't work. I've read, on the Internet, that for pain you need cbd and htc)

I had my infusion in Airedale hospital. Good on them they were aware of iron deficiency being connected to rls and were up for giving I'm infusion a try. I've an appointment with a hematologist next week. I'll be reporting my results so they are there for everyone to see. Hopefully it will bolster the case for anyone else that wants to try an infusion.

[Joolsg in reply to Docker]

Excellent news.

My RLS improved dramatically over summer 2018 when ferritin levels were 205.

My RLS has been playing up again over the last few months and today I got my blood results- ferritin dropped to 138.

I still take ferrous bisglycinate orally and in patch form every other day but I think I need to push for an infusion. I’ve already asked my neurologist at Kings College Hospital ( supposed RLS experts but I’m not impressed with them) but I will have to beg my MS neurologist to refer me to a haematologist in London.

I’ll start writing to London hospitals to find out if anyone is prepared to do it.

Thanks for sharing the info.

[LotteM in reply to Joolsg]

Indeed excellent for the UK people - and given the ipcoming brexit (on my birthday 😭), they definitely can do with some good news. I think you’re the first to report that you could get an iron infusion for RLS in the UK. And that with a ferritin level of over 100! That is hopeful for your fellow Brits.

[Parminter]

Excellent news, Peter. You got hold of an informed doctor. Well done.

I think we should all take note of the fact that your doctor did not consider that a ferritin level of 105 was sufficient. Good to know.

And that you feel great at 350, which is a magic number that comes up often.

You could lose a lot of this before the six months is up. We cannot hold onto it, it just vanishes.

My own levels halved within three months after an infusion. Trust your body to tell you.

[Docker in reply to Parminter]

Hi Parminter, I take it you've also had an iron infusion?

What did you do after your 3 months?

[Parminter in reply to Docker]

I topped up with a smaller dose. I have not re-tested since then.

I do this with my GP, who is now confident of the procedure for me, and who will give me another infusion when necessary.

Most people think a specialist is necessary for this - not so, it is a simple procedure that needs well-understood precautions .

[Docker in reply to Parminter]

How many infusions have you had?

[Docker in reply to Parminter]

Do you notice any side effects from having an hight ferritin level?

[Parminter in reply to Docker]

The first infusion was in three parts over three days, to guard against problems.

The second, which was a more expensive form of iron, was one hour.

So, two. Thus far. No doubt they will be a regular feature of my RLS future.

I noticed, by the next day, that I felt much more alert and alive. No unwanted effects.

My symptoms did not disappear completely until I quit pramipexole - and I have come to the conclusion that pramipexole will interfere with any other drug or treatment one may try. Monster drug, it should have a Black Box warning.

Now I am very well on a small dose of methadone - and enough iron. (My ferritin level was 20).

[Docker in reply to Parminter]

I had similar problem coming off rotigotine patches 2mg. I was that low it nearly finished me. Or should I say "I nearly finished me." Walking as many miles as possible brought me back. Very powerful drugs!

Now I'm a happy chappy taking nothing just walking now and then.

[Parminter in reply to Docker]

Good to hear. Long may it last!

[Bumblebee88]

That's fabulous news well done to you and your doctor.

[Graham3196]

That's very encouraging news for us all. Thanks for telling us and giving us hope. Was the iron infusion paid for by the government health fund?

A couple of quotes from Dr Buchfuhrer that might help others who are considering following in your footsteps.

"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."

and

"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 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. "

Cheers

Graham

[marci6]

after 2 years almost every night even though my iron level was not low, my GP and I agreed I need to try iron supplement. I take 65mg with orange juice along with ropinirole 5mg. no more RL. I don't know if I really need the ropinirole but I take it just to be sure. I had only 1 bad night but I ate a lot of sugar cookies before bed time. so I now know what triggers it. I also cut out all sugar that I can.

[KickininAz in reply to marci6]

What kind of iron do you take, brand name for example. Is it something I can get in the US?

[marci6 in reply to KickininAz]

I don't really know until I get home from work. but I bought it at Wal-Mart. less than $5.00. I'll check the name brand. they also had iron with Vitim C but it was $17.00 for 60 pills so I just got the cheaper one. I also bought some magnesium tablets and take 1 a day. but I really don't think that helps me. I have suffer with RL for along time but it really kick in about 2 years ago.

[KickininAz in reply to marci6]

Thanks for the reply. I have been taking the ferrous sulfate type of iron supplement, but I will change to the gentle iron in hopes it will be more effective.

[LotteM in reply to marci6]

Marci, how much ropinirole do you take? 5mg? Or 0.5mg? The former is way too much, max. advised dose by knowledgeable doctors/researchers is now 1 mg.

If you can do without, please do. Ropinirole is a dopamine agonist, and the chances are very high that sooner or later they make the RLS worse,much worse. It is called augmentation. Once you develop that, withdrawal from the DA usually also has become difficult. Thus, to avoid that route, try without, or with the lowest possible dose. Maybe half a 0.25mg pill will suffice. Or only on some nights. You can take ropinirole on an ‘as needed’ basis very safely. Confirmed by dr Buchfuhrer. Although most doctors will tell you the contrary.

[marci6 in reply to LotteM]

Ropinirole 0.5mg. also I take Amitriptyline 25mg to help me sleep. take these 2 together at 7:00pm. I take 250mg of magnesium in the morning with Centrum silver. it's been along time I felt this good. no more 2:30am riding my excercise bike.

[amiller2121]

I feel that I'm in a very similar situation to you. My issue is that my transferrin/TIBC is low range and everything I read states of those should be higher if I was truly iron deficient. On the other hand, my CRP is normal so inflammation doesn't seem to be a factor.

Did you happened to have your other iron biomarkers tested?

Andrew

[Docker in reply to amiller2121]

Hi Andrew. No. I've only ever had my ferritin level checked.

[Pippins2 in reply to Docker]

I have sent you a private message Docker .I am very pleased to hear of your success -Pipps