I have been offered an iron infusion.... - Restless Legs Syn...

Restless Legs Syndrome

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I have been offered an iron infusion. Has anyone had this procedure and was it effective? Also I was informed that there was some risk.

Noddedoffagain profile image
Noddedoffagain

Iron infusion

33 Replies

Hi. I had one. As far as I know there is -very, very- small risk of an allergic reaction. But the infusion most likely tales place in a hospital or clinic setting? And the nurses will watch you.

The infusion didn't help my RLS. But brain iron deficiency (BID) is widely thought to be the cause of RLS. It is difficult to get iron into tue brain, as the scientists haven't yet identified what causes the BID. And iron infusion helps quite a few people with RLS, I think the current figure is 60%. It may mot solve it, but for those will at least reduce the level of RLS. Up until now it is not known who will profit from an iron infusion, and who will not. Definitely worth a try, in my opinion.

It may take weeks to months before you notice effects. It will not give respite immediately.

Please keep us posted.

Also, to help others, would you mind sharing how you got it offered? Low blood values? What doctor/consultant offering and thus harbouring the knowledge about the importance of iron in RLS? And whereabouts are you or the hospital/clinic?

Finally: I hope it helps you!

Hello LotteM Many thanks for replying. I live in Hertfordshire UK and have already augmented twice on DAs. Every drug that I have been given either gives me allergic rashes or doesn’t have any effect on my RLS. I finally weaned myself off all drugs in January this year so since then I have been existing on approximately 2hrs sleep per night. My consultant has very little else to offer to me. I have been given some Tramadol to use only once or twice a week so that I don’t become dependent. The iron infusion was offered today but as yet, I don’t know when. According to her, NICE say that for people like us our ferritin shouldn’t be less than 75. I said that I thought it should be much higher. Mine is 113. I had been offered this about 18months ago but lockdown prevented it from happening. I am allergic to aspirin, penicillin, latex and any creams with perfume so this is why I’m a little anxious about the infusion. As you said I will be in a hospital so the nurses will be on hand. Again thank you for replying x

2 hours of sleep is not enough. If the Tramadol works I would have a conversation with yourself and your doctor about using it more if the benefits clearly increase your quality of life. Almost all the medication used to treat RLS will have some level of dependancy. Dependency on Tramadol may be ok if the results are fantastic. Now , if you show signs of addiction and abuse with the drug thats different and would be a cause for concern. Do what's comfortable for you. There are quite a few of us who use opiotes daily for relief.

Moreover, since your consultant seems stumped, take control of your treatment. Arm yourself with knowledge. Print out studies, guidines and even antecdotal evidence to bring with to help you find an answer.

Good Luck.

Thank you ziggypiggy. The few Tramadol that I have left from 2018 have been a life saver but I have had to ration them out ‘like the boy did his manners’. Now the consultant ( with reservations) has prescribed some more, I will be able to take one a couple of times a week. I was, last year, prescribed Targinact by the consultant but my doctor was not allowed to continue to prescribe it. Evidently, the consultant is not allowed to do so either and must try to wean existing users off it.

Wow, great that you managed to get an IV iron infusion, especially in the UK. Sounds like you have a great consultant.

The less than 75 value for ferritin is mentioned ny NICE, but it's not the whole picture. What NICE actually says is that if it's less than 75 then prescribe iron supplements.

This doesn't mean that 75 is OK. The full picture is that if it's above 75 then oral supplements won't be effective.

The ideal value is at least 200. As yours is already over 100, it will

be virtually impossible to raise it further with supplements. It needs an infusion.

See this link

sciencedirect.com/science/a...

You could pass this on to your consultant, it might interest them.

There is a small risk of iron overload with IV iron, (apart from allergic reaction), but you will probably have tests for transferrin saturation. If it's under 45% then you should be OK.

As Lotte says. the success rate is 60%, partial success another 20%. Infusions have to be repeated.

Good luck :-)

Once again thank you Manerva. It is mainly due to you that I was able to hold an intelligent conversation with my consultant today. I have learnt so much from this site and you especially that it gave me confidence and knowledge to fight my corner. Initially I was offered a third DA which I refused. I then asked what was left for me to do, as at the moment, all I have are a few Tramodol which were prescribed in 2018. I occasionally take one to get a little respite from this dreadful affliction. Xx

I'm pleased I've been helpful for you. 😃

My son gets infusion every so often because of anemia. He feels so much better afterwards. No side effects.

Thank you - that’s encouraging

Manerva profile image
Manerva in reply to 1Ginge1

Is that a blood transfusion or an iron infusion?

Iron

Thanks 😀

1Ginge1 profile image
1Ginge1 in reply to Manerva

Were you asking me about my son? A blood infusion. For a while they were taking his blood. Now they seem to be giving him back blood. Is that infusion or transfusion?

Manerva profile image
Manerva in reply to 1Ginge1

A blood transfusion is where whole blood is taken from one person and given to another person. The blood is introduced into a vein, i.e. intravenously = IV

An infusion is where a substance dissolved in water is given to a person, usually IV

Hence an IV iron infusion is where iron salts disoolved in water are given into a vein.

1Ginge1 profile image
1Ginge1 in reply to Manerva

Got it. My son got a transfusion of blood. I on the other hand give my own blood, which they throw away. My blood should be valuable because it has all that lovely iron. Sadly they won't use it. Mine is a Phlebotomy. In the first days of his treatments he also had to have Phlebotomies. Of course this isn't about RLS. We both have Hemochromatosis. How ever it did have to do with iron.

Manerva profile image
Manerva in reply to 1Ginge1

HI, I'm familiar with Haemochromatosis. Sorry you and your son have it.

Although haemochromatosis causes an excess of iron in the blood, you can still develop RLS.

Do you have RLS?

Unfortunately, you can't have an IV iron infusion for RLS.

Hi Noddedoffagain, I had an iron infusion in February this year -it was worth it for me. I had Injectafer 750 ml - 2 infusions spaced 1 week apart. The only side effects I had was an achy back for 2 days after the 2nd infusion. My RL sx began to subside but not disappear about 4-6 weeks after the 2nd infusion.Subsequently I was treated for a helicobacter pylori stomach infection and about 2 months later was fitted for a sleep apnea dental appliance. Between all (3) treatments, my RLegs have stopped. (I also changed my diet to more of a FODMAP diet which I believe has helped tremendously). I was not taking meds at the time of starting all of these treatments and my RL (and a few times my shoulders) were keeping me awake 8 hours a night off and on. I did not sleep more than 2-3 intermittent hours a night for 8-9 months straight. I now sleep 8-9 hrs with bathroom breaks - no problems with the legs. This has been my experience and I know everyone's is different. My lab values before the iron infusion were as follows:

Iron 63 ug/dl, TIBC 452 ug/dl, % Saturation 14 ug/dl, Ferritin 17.6 ug/dl, Hbg 12.3

My 3 month follow up with the Dr. is May 19th at which my lab values will reflect the true values after the iron infusion. I'll post them at that time.

Gosh Reb0013 - what an improvement for you. Thank you for all that information, I do feel more reassured now. I know they must always mention possible side - effects and for me with many allergies, I must be cautious. The replies from you all have been immensely helpful. Thank you Reb0013 for taking the trouble to reply to me.

I had an Injectafer infusion at St. George's hospital, London in 2018. My ferritin went from 175 to 785. Sadly, no improvement at all. Dr. Winkelman has stated iron infusions are dramatically effective for 60%, moderately effective for 20% but no effect for 20%.It can take up to 6 months to see any results.

I recall you're not on any meds at all for your RLS. If you don't see any improvement after a few months you should ask for effective meds.

Also remember GPs are not taught anything about RLS at medical school so their only information/ knowledge comes from the NHS/NICE information which is helpful but doesn't cover the most up to date expert views. It still mentions Dopamine Agonists and the max dose is still listed as 4mg, which experts believe is far too high.

I had no side effects at all. It's regarded as one of the safest infusions.

Fingers crossed it works.

Thank you Joolsg. I do pray that it works as there is nothing more that they can give me. I first started on DA’s back in 2005 and luckily got many good years from them. Other meds gave me dreadful rashes so I’m a bit of an enigma for them. Fingers crossed that I’m in the 60%. I must say that being on no drugs is so much better than the hell of augmentation and withdrawal.

You have come to the absolute best place for information on Restless legs. You are in GREAT hands. Listen and read everything they say! I did.

BTW, I had an infusion of iron sucrose... it takes awhile but it did wake me up to the importance of iron (and a good diet).

Get that infusion! Then come back and let us know!

I certainly will - until I found this site I actually didn’t know anyone else who had RLS. I thought it was only me. Just knowing that other sufferers are offering comfort and support as well as sharing their incredible knowledge, is so comforting. Many thanks

I haven’t had an iron infusion but know how important it is and take a ferritin supplement. My blood levels were checked but all I was told by my GP is that they are ok! Not very helpful. I also have fybromygelia which he doesn’t believe exists and i struggle to get him to keep to the treatment plan set out by the hospital Pain Team. I don’t think I should be treated this way and want to change GP, if anyone knows how or has experience of this I would be greatful for your input. I think you should go for the transfusion. My wife is a nurse and if you explain your concerns they will go through it with you in detail and keep a special eye out for you.😀

I hope that you quickly find a GP who is willing to implement your pain plan. I am lucky with my GP as he is willing to admit that I know a little more about RLS than he does. I don’t think RLS is studied in Medical Colleges so some doctors are learning alongside their patients

I'm lucky enough to have a great pain team at the hospital, My wife works thete as an Intensive Care nurse too! My old GP of twenty plus years was great. New guy doesn't listen, talks over me and has an ego the size of a planet. Great if DR learns with you, they can't be expected to know everything, also they are the professionals but no one knows your body better than you!

Very true. My Dr. actually asks me to give him feedback

Hey there!! I too struggle with severe RLS & Fibro and have had the same reaction from various Drs/Specialists in regards to Fibro "existing". I know they only offer the test in the US at the moment (if you ever travel over here you can get it), but google FM Test. It's a blood test for Fibro that they came out with and it talks of the reasons they believe are behind the Fibro. I got diagnosed by a pain clinic Dr with it over 10 yrs ago. I just took this FM Test and got my results back last week, which confirmed I actually do have this. As of right now, they are set to start a clinical trial I believe next year on a drug for Fibro. They also have a a Facebook website too under FM Test. Even if you can't get the test, the info may help you get the Doctors to believe you. My Neurologist never even heard of it and said he was going to look it up. All the best to you my friend ❤🙏🏻

Well done you for persevering- I do think the knowledge we have gained from this site is giving us a voice Keep well and strong. X

It’s interesting that the medical profession are starting to treat fibro/ME and Chronnic fatigue as the same thing. If you look at the symptoms of all three they are practically identical. But research is only funded by big pharma and unless they can see a pill and a profit we are going to continue to lurch on.

In April of 2018, I hade 2 consecutive iron infusionsI, I think about a month apart. I had an immediate 98 % reduction in my RLS. In the 3 years since, it has returned slightly, to a manageable level. It only occurs occasionally at night or early morning, when I am sleeping. My total iron went up, way out of normal range but I have not had any side effects or problems. The total iron has come down but is still out of normal range. Before the infusions, I was struggling with my RLS, not taking any medication for it. Since the infusions I have not taking medication for what little problem I have with it. I recommend the iron infusion with proper medical guidance.Good luck

Bill

Wow Bill - that really is encouraging to read. Thank you for replying & for giving me some hope x

I had one a few years ago. It raised my ferritin from 70 to 650! My RLS was better for about 4 months even though my ferritin stayed over 200 for quite a while. No side effects.

Hello Marsha2306 - it’s 2.00 a.m. where I am and I’m in the bath trying to get some relief. Thank you for your reply - I’m really hopeful now. X