LotteM

Well done, Graham! Keeping my fingers crossed it will work for you. According to the scientific papers, chances are up to about 50%. Did you already discuss the need for repeated infusions when it does work? Too bad you have to pay for it yourself, it may get quite expensive. Please keep us posted!

Graham3196 in reply to LotteM

Thanks for your good wishes. Yes I have discussed possible repeats (but there was no suggestion of a refill under guarantee) I made the point that I wanted to achieve about 350 so if it is less I will argue to get it topped up. If I need anymore this financial year (July to June in Australia) then the health fund will cover all the cost.

I think it was Doctor Buchfuhrer who said that if it went up and then falls lower with time there is a high chance that I have an internal blood leakage. Nasty thought but I suppose its a good thing to discover and fix.

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Elisse2

Good luck, i hope it works for you. !

Graham3196 in reply to Elisse2

Thankyou

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Hidden

Great news Graham. And lucky you for getting lunch - I just got a bottle of water when I paid over £500 for an infusion! Really hope it helps your symptoms

Grandiflora

Graham - Please see my advice to Pam. God bless.

bedith6

So glad you had your iron infusion at last . I do hope it works. Why does the medical profession make such a fuss about giving it to RLS patients?. I am still struggling to get mine. Now my G,P has asked me to take iron tablets for 3 months and if this hasn't raised my ferrittin levels then they may consider asking the hospital for an iron infusion. So I'm suffering for at least another 3 months when I know the tablets are not going to make enough difference (if any). Do let us know if you get any benefit from your infusion please.

Graham3196 in reply to bedith6

Thanks for your support. Can you just try a new GP? If it costs you money to change then ring them first and ask about their attitude to iron infusion for RLS. I found that the receptionist will sometimes be able to answer this question. Then the next problem is finding a hospital that will cooperate. I know of two in the UK that have been mentioned in this forum

UK

1 Sleekat in a post about 17Aug18

Hi Pippins 2 I live in Hampshire & had iron infusion in Winchester Hospital.

2 Boo-boo in reply to Pippins2 about 17Aug18

Hi Pippins.....the neurologist is Dr Sarah Jackson, Royal Devon & Exeter Hospital. I Searched for Doctor Jackson and found the following details

GENERAL ENQUIRIES

If you have an enquiry about our service, fundraising or this website, please get in touch. 01392 688000

Lines open from 8am - 8pm on weekdays and from 10am - 7pm on weekends and holidays.

WRITE TO US

Hospiscare, Searle House, Dryden Road Exeter, Devon, EX2 5JJ

If it works (50% chance) then it would be worth a flight to one of these.

There was another mention of a Harley St specialist who was expensive but did the job.

Resist the drugs until you have tried this. So many people are having trouble with the RLS drugs! I presume there are lots of people who are perfectly well and happy with the drugs but it looks like a tricky path to tread.

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bedith6

I am in the U.K. and don't have private medical ins. so that one is tricky. I did get as far as I have by changing the Dr. within the practice but she has admitted she knows very little about RLS. However I might get an infusion when it becomes obvious that the tablets won't work. Good Luck.

LotteM

However difficult at times, sometimes we just have to stick it out. (Is that a current English expression? It came out spontaneously. I hope you understand what I mean.)

Anyway, do keep in mind that iron infusion only works for at maximum 50% of the people. This partial responsiveness is not yet understood - no relation with previous numbers in the iron panels. Or otherwise.

rls_optimist in reply to LotteM

Hi, Lotte, yes, that is still a current phrase, as far as I know. Interesting turn of phrase, when I think about it. Maybe similar to "we just have to stick to it".

As for that maximum effectiveness percentage for iron therapy, there doesn't seem to be a consensus on that. I've seen numbers ranging from 30% to 80%. I figure it's always worth a try.

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Dougg

Graham - Thanks for sharing your good news and your journey with us. We appreciate you keeping us posted. Good luck!

-- Doug

tmshepard35

I hope you find relief through the transfusion! Fingers crossed! Good luck

bauerannec

Hi Graham,

Greetings from Texas USA !

I have started taking iron tablets 26mg, it's too soon to see if it's helped my restless toes syndrome, but I'll be delighted if taking iron tablets does help.

I've been anemic off and on most of my life and I'm 69 now.

I also take ropinirole which really helps.

I hope the iron infusion helps your rls !

Good Luck and God Bless !

Annelle

Graham3196 in reply to bauerannec

Hi Texas I would say that if you have a history of anemia then you should beg your medical advisor for an iron infusion. Once again using my daughter as an example. She had a ferritin level of about 5 and mild RLS most nights. After an iron infusion and from day1 her RLS was gone and she was a much healthier person.

She had no problem getting an iron infusion because she was legitimately anemic.

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bauerannec in reply to Graham3196

Hi Graham,

Howdy from Texas !

Thank You for telling me about your daughters iron infusion. The next time I go to see my Doctor ,I will definitely ask him about doing an iron infusion. Problem is he hasn't checked my iron levels in awhile, so I wonder if it would be best to have my iron levels checked then if they're real low, then see if he'll do the iron infusion, I'll keep you posted!

If having a iron infusion would stop my restless toes syndrome ,that would be WONDERFUL!!

I'll let you know if my Doctor will test my iron levels and see what the test shows and if I'm anemic again ,I will definitely ask my Doctor if I can have a iron infusion.

We will go to him in several months. I hope he'll do it!

Thank's for the advice !

Annelle

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rogerwegner

I had two infusions a week apart and the results were amazing and fast. The cramps went away the first night. I am getting a blood draw on Monday to see where my ferritan level is at. It has been a month since the last infusion. I tried the pills for 9 months and they were not working.We will see on Monday what is next.

Jumpey

Your persistence paid off! Well done. Sending wishes that your symptoms will disappear.x

Svengolly

Graham gets a gram ! : )

rls_optimist

Hi, Graham, I'm happy to hear you finally got the infusion. You're wise to be patient and assume it may take up to 12 weeks to have an effect. I had my 1st 1000 mg infusion last August, and it had a noticeable positive effect by week 6. After another 2 weeks, the improvements began to diminish. This correlated with my ferritin levels: 23 before the infusion; 249 at 4 weeks post-infusion; 160 at 8 weeks. I'm scheduled to have a 2nd infusion next week. From what I've read, it may take several infusions to achieve a stable high level, for some of us. I'll keep you all posted on my progress. Fingers crossed for you!

LotteM in reply to rls_optimist

That is good info, rls-optimist. Thanks. I thought about the effectiveness of an iron infusion which may depend on the pre- and postinfusion levels of ferritin. I wondered a few days ago when nightdancer said her infusion didn’t help. Although the ferritin levels are probably just one aspect.

Keep us posted how you do after your next infusion. I am very interested as my neurologist suddenly mentioned an infusion as well (while during the previous visit she maintained that she “didn’t believe in iron”). Maybe from the stories of the people on the forum we’ll gather some ideas as to why an infusion works for some and not for others. I do hope you will fall completely into the first category!

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Graham3196 in reply to rls_optimist

Thanks for the details. At ferritin of 23 you obviously needed action and it is showing a correlation with improvement in the RLS. That gives us all hope. Do you notice an improvement in your general well being as well?

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rls_optimist in reply to Graham3196

Hmm... hard to say. It's possible, but it would have been more subtle, harder to determine. The RLS improvement was easier to quantify, as I was able to reduce my medications by about 33% overall at the 6-week point. Now, it's about 25% down.

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marsha2306

I had one a few years ago. Worked after 8 weeks; lasted a few months. Increased my ferritin from 70 to 650. After a year it went to 415. But still the infusion results were only temporary

LotteM in reply to marsha2306

Marsha, that is quite common that the effects of the infusion are only temporary. I don’t remeber exactly, but I think repeats every 6 months have been mentioned (in the scientific literature). Did you get repeats? Or didn’t you because you and your doctor expected it to last ‘forever’? Why people with rls tend to lose/leak iron from their bodies is unknown - and nit even properly described.

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marsha2306 in reply to LotteM

I actually didn’t get repeats. Even though it returned, it wasn’t nearly as bad as before so I increased the Gabapentin from 300 to 600 and adjusted the time I took it at nite and I was pretty much ok. My doctor is Dr. Christopher Early who is the one known best for the iron infusion theory.

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Graham3196 in reply to marsha2306

That's interesting. Can I ask why the doctor thought it was best to take drugs rather than try increasing the ferritin with another infusion?

It sounds pretty exciting to have a doctor with the status of Doctor Early

I am hoping to get rid of the RLS without taking any drugs if possible. Sticking to the FODMAP diet has worked pretty well but IF an infusion lets me eat everything I would prefer that.

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LotteM in reply to Graham3196

I have the same question as Graham. Especially necause I find the meds come with side effects. Better than untreated RLS, but stil...

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Restlesssinger

Congratulations, Graham! Thank you for sharing this news!

RLSgirl

I can't wait to see how it works for you.

I've seen my GP and a neurologist now, and they have all been dead ends on the search to get an iron infusion. But my GP did ask me to try oral iron first. I ended up using the patch. and after 3mo. my ferritin levels went from 29 to 57. so there is some improvement in the numbers, but I almost feel as if that is only going to make it harder to find help because I am not actually anemic, and the patch is working, just not at the level I would like!

I'm going to wait till the new year to pursue anything further and keep taking the iron patch. And I think that I will have to try and contact John's Hopkins to get anywhere with the iron infusion.

Graham3196

From what Marsha2306 says above it sounds like a visit to Doctor Christopher Early at Johns Hopkins might be the best way for you to go. Do you live close to Johns Hopkins?

I expect there would be quite a waiting list for Doctor Early so perhaps ring his office today and ask if you need a referral to see him. If so then your GP should provide a referral without a fight.

If not book yourself in as soon as possible

The only way to know if it will help you is to try it.

Good Luck

Graham

Nottsali

Great news!

When I first developed symptoms I had blood tests and my gp said my ferritin was "normal", advised ropinirole, but I saw a second gp at the practice (after reading about probs with DA on here) who said it was 52 and 'too low for someone with rls symptoms, we'll try and get it above 90" hoorah! Anyway, 2 months on iron tablets took it to....53 so on liquid iron for 10 weeks. Neurologist gave the ok for gabapentin but not taken any yet, hanging on in hope of improvement but symptoms 24. Gp said I wouldn't get iron infusion on nhs. It's a waiting game isn't it?

LotteM

Hi Graham, are news re your symptoms after the iron infusion? Any observable changes yet? I forgot what else you do or take to handle your RLS.

Graham3196

Hi Lotte

No good news yet. Thanks for asking. I have to be patient because I have been told it can be up to 12 weeks to see the benefit. About 20February will be an onion and garlic pie night!!! About 20Dec I will get a blood analysis to see how much good the iron infusion did.

Last night I had a sleep study to see if I have sleep Apnea that could be causing the RLS. This is where I sleep the night in the clinic with electrodes in lots of places to pick up sleep apnea and some for RLS. I had the worst night of RLS for about 2 years. I think it was something to do with having the cables trailing around me so I couldn't move freely. Its odd because I don't expect to have many symptoms these days.

At the moment I am only taking a couple of paracetamols before bed. My diet is taking care of all my symptoms. In the last few weeks I have had an unusual number of nights with sleep disturbed by symptoms and I haven't been able to explain them. I hope a diet can't Augment!! LOL ( I think)

Cheers

Graham