Iron Infusion: I have been using the... - Restless Legs Syn...

Restless Legs Syndrome

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Iron Infusion

DisneS
DisneS

I have been using the Neupro patch but augmented on it. I managed to wean off it gradually with the help of Tramadol and have been off it now for six months. Unfortunately I experienced horrendous side effects with the Tramadol ( severe constipation and a burning sensation on my skin) so can’t take that again . After this the doctor prescribed Gaberpentin which helped at first but now is, not only losing its effect but it is also giving me the same side effects. The constipation is really severe as I have suffered from it for most of my life before starting medication. I am 76 years of age and my body can’t stand any more problems.

I would really like to have an iron infusion but my GP seems to have his hands tied and won’t consider it as I’m not anaemic. (My ferratin level is 66) I live in the UK near Sheffield and I wondered if anyone knows where I could get an infusion privately

26 Replies
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I would love to get an iron infusion also so will be watching this space. So sorry to read of your troubles DisneS. Have you tried magnesium for your constipation? It seems to have a very loosening effect and many people find it helps their rls also.

Thanks ID but yes I am taking them at the moment. Guess it’s a whole lifetime with constipation which is the problem

DL-83
DL-83 in reply to DisneS

Hi again. Is Miralax available where you live? I take one full cap in a tall glass of liquid (any thing you like) stir really well and sip on it all day until it’s done. You might have to adjust the amount and days to your system, but it’s gentle and much better than the harsher laxitives. I hope you can buy it where you live. I’m in the US (Pennsylvania). Good luck!

I’m sorry about your constipation issues. Strangely I had the opposite problem on Gabapentin.As Involuntary Dancer has advised, try magnesium citrate at night. Take 2 or 3 capsules and increase veggies- both help.

There are a few places that will consider iron infusions in the UK. I have heard that the Royal Exeter in Devon and the Royal Bromton in London have given infusions but I don’t know of any specialists in Yorkshire.

You could search for haematologists and self refer to one in Yorkshire. Emailing beforehand will save time and money.

Alternatively you could try raising serum ferritin by taking ferrous bisglycinate by pill ( Holland & Barrett) and skin patch (PatchMD) every Other night. I managed to get levels to over 200 by doing this over 2 years.

You could also ask to switch to pregabalin, a similar drug to Gabapentin, which is better absorbed by the body and has fewer side effects.

DisneS
DisneS in reply to Joolsg

You did well . I have started ferrous bisglycinate and will think about the patch. Thanks a lit

What part of the world do you live in?

Here are two places where people have reported they had iron infusion for RLS

Information from 3 people in UK

1 I live in Hampshire & had iron infusion in Winchester Hospital.

2 The neurologist is Dr Sarah Jackson, Royal Devon & Exeter Hospital. In August last year my ferritin score was 43; I raised it to 59 at the end of November by taking iron bisglycinate. Post the infusion in January it went to 435 and last month it was 155.

3 My infusion cost around £600 : £250 for the (five minute) consultation and £350 for the infusion itself. The easiest place for me to go was Harley Street in London (a famous street of private, expensive practice!) but it is not widely available privately in the UK. If it had resolved my RLS it would have been worth every penny, I am still glad I did it as it has speeded up my treatment once we were able to dismiss that as the absolute cause.

Someone in Australia reported that they had an infusion in a public hospital with the government paying.

Another person in Australia paid AUD240 for an infusion at a private hospital.

I am waiting for an interview (2 Nov) for an infusion at Monash Hospital in Melbourne and they know that I want it for RLS rather than anemia. That will be paid by the government Medicare system

I spoke to the Alfred Hospital in Melbourne and they said that if I can get a referral from a GP they are happy to give me an infusion for RLS but the waiting time was the same as Monash.

I had to go to five GPs to get a referral to Monash.

Jumpey
Jumpey in reply to Graham3196

That's great info.. What effect did the infusion have on your RLS symptoms?x

Graham3196
Graham3196 in reply to Jumpey

Its yet to happen - I have achieved an appointment with a specialist, on Nov 2, who, I hope, will agree with me that an infusion is suitable so I will then get an infusion. I'm sure brain surgery would be easier!

I have high expectations that it will cure me but I know the probability is not 100%. I think its higher than 30% which is a pretty good chance for a dramatic improvement. My hope is that I can be less restricted in my diet.

Miadevaia7
Miadevaia7 in reply to Jumpey

I've had RLS for about 10 years. It started out not so bad & me not really knowing what it was. It's only in the last 1 1/2, doing my own research discovered that my high anemia was causing my RLS. I am highly anemic due to my very heavy periods. I requested iron infusion & was approved because my #'s were so bad. I've got my first Iron infusion 12/2017. It helped tremendously, got my #'s up & my RLS manageable. after 3 months/3periods #'s went way down again so I got another set of IV 4/2018. Then the last set 8/2018. just got my blood levels checked & they are the best in ten years. My RLS today is minimal. I'm am going to paste something here regarding RLS & iron & were your #'s should be. There are 4 #'s to check, 3 of 4 of those numbers are great for me. The only one I need to get up is the Serum Ferritin, needs to be over 100, mine I believe is 60.

From Charles: RLS

Source: Johns Hopkins University and Medical Center)

There are 3 other iron parameters that must be checked if you are an RLS patient...

There are 4 iron tests for determining a patient's iron status. For RLS patients,

1~Serum iron should be greater than 60,

2~Percent iron saturation should be greater than 16%,

3~TIBC (Total Iron Binding Capacity) should be less than 400

4~Serum ferritin should be greater than 18. At least a 100 for RLS patients

In fact, the new recommended ferritin number for RLS patients is at least 100. If you fall short in any *ONE* of these 4 tests you may have an iron shortage severe enough to still be driving your symptoms. This is how RLS patients should have their iron status determined. Aside from serum ferritin these tests are almost never run routinely or associated with RLS by most, if not all doctors. Also, these tests should be done with an overnight fasting, since serum iron is affected by food and can give false readings. (

DisneS
DisneS in reply to Miadevaia7

Never heard about having these four tests. My Doctor has tested my serum ferratin and I can’t imagine him agreeing to three more tests.

This is great information, thanks.

Just lately there has been some more information about the ferritin level. Doctor Buchfuhrer from the US and some of the people at Johns Hopkins have found that raising the ferritin level to about 300 can give more patients relief.

Appearenly the long accepted level of 100 was not based on solid research and their recent work suggests the higher figure.

I will post some information from Doctor Buchfuhrer here later.

If you post something please tag me somehow, I'm interested in your findings

LotteM
LotteM in reply to Miadevaia7

I think this is the paper that Graham referred to.

ncbi.nlm.nih.gov/m/pubmed/2...

DisneS
DisneS in reply to Graham3196

Thanks for the information. So did you conclude that your ferratin level was not contributing to your RLS?

Graham3196
Graham3196 in reply to DisneS

Hi

I have not yet had an iron infusion so I don't know if it will help me with my RLS. I intend to have an iron infusion as soon as I can arrange it.

I have seen many recommendations that strongly suggest that there is a chance that raising my ferritin level to about 350 might give me relief from my RLS symptoms.

I am not qualified but on the basis of what I have read and been told I would recommend that anyone with RLS consults their doctor to make sure an iron infusion is safe for them and, if approved from the point of view of safety, get an iron infusion as soon as possible.

The problem many people, including me, have found is that GPs have a resistance to referring patients who are not anemic for an iron infusion. It seems that in some countries they have to work to guidelines from their controlling bodies and that these guidelines have not caught up with the current best practice. Even if you are paying for the iron infusion yourself then the GP might be taking a risk by approving an iron infusion. An iron infusion has a risk like any other intrusion into your body and also has a small risk that is associated with the medicine that is infused into your body. If something goes wrong with a procedure that is not considered "standard" then I think the GP worries that he might be accused of negligence and perhaps sued. If this is correct and you put yourself in their position of a very low risk of ruining their career and their life then you will understand that they are limited in what they might decide to do.

Graham

DisneS
DisneS in reply to Graham3196

Thanks for your information. Are you expecting that your GP will approve an iron infusion for you. Are you also in the UK?

Graham3196
Graham3196 in reply to DisneS

I am in Australia.

My GP passed me over to a colleague who works two days a week at a facility that does iron infusions for him to decide if I could have an infusion. Colleague was adamant that my ferritin was normal according to "guidelines"and therefore he would not perform an iron infusion. Nor would he even read the reports on the recent RLS/ferritin procedures. I went doctor shopping both physically and on the phone and found a GP who was happy to accept that I had reports that showed increasing ferritin might be to my advantage. He also agreed that raising ferritin level even to 500 which is higher than suggested by Doctor Buchfurher, seemed to be a safe thing to do.

He gave me a referral to a public hospital sleep clinic and I am waiting for an interview with a doctor there to decide if there is a problem. This sleep clinic knows that I am not anemic and that I want the infusion to raise my ferritin as a measure to stop the RLS. So I am not expecting a problem at that stage.

There seems to be a lot of mucking around for a simple, safe procedure that might work a miracle.

Graham

Miadevaia7
Miadevaia7 in reply to DisneS

I concluded that, for me, it's 100% causing my RLS. My blood levels, right now, are the best They've been in 10 years & my RLS is 80% gone. I control the other 20% with CBD oil. When my RLS was out of control I had to smoke weed. Fyi: out of the ten years that I've had this, it's only in the last year-and-a-half that I've learned what I know. Hold on through my own research and blogs that I joined for LS. I'm on a Blog in Facebook that was tremendously helpful.

Did you get my private message?

I was in a big he\urry this afternoon so I just sent it off.

Yes, I did thanks a bunch. Didn't get to read all of it yet. Will do so this evening. Thanks again!

Whole Food Plant Based nutrition including a tablespoon of ground flax seed taken with 1-2 glasses of water will help with constipation and also with ALS.

DisneS
DisneS in reply to Bajatom

I have recently switched to an almost vegetarian diet and reduced sugar which I do hope will have a beneficial effect. Unfortunately flax seed doesn’t suit me but many thanks for your reply.

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I had an iron infusion privately at the Iron Clinic in London (easy to find their website on google).

Graham has included my post re the cost above. It had some positive effects on my fatigue but didn't help my PLMS. Recently had my iron levels and ferritin checked and they remain quite high, which is good except that the leg movements remain high too! As is said many times on this forum, its different strokes for different folks. Iron infusion didn't work for me but that doesn't mean it won't work for you (pregabalin and ropinirole didn't work for me either, currently trying melatonin which isn't stopping the movements but helps me to sleep through some of them)

Good luck!

I’m 83 years old. My ferratin level was 9. I just had 2 infusions and will be checking in to see if they worked. I seriously don’t see them helping you since you don’t show as being anaemic. I have a friend who has such a high level he must test constantly and he must watch his diet. I’ll let u know if it worked for me. I did notice my RLS attacks have diminished somewhat. I can get sleep at least 3 nights a week now. I hope it lasts.

Thanks DL-83. I’m glad you are getting some improvement. I’m experiencing awful problems with side effects from Gaberpentin at the moment. With my past experience with the Neupro patch and Tramadol I am beginning wonder where to turn to.

I tried Gabapentin but I didn’t like the way I felt the next day. I felt like a zombie. And it was a mild dose. My daughter takes 600mg but I think she should stop because she acts loopy after she takes them. She stops talking and her eyes close. Then all of a sudden she opens them and speaks. I get so tired of talking to my cat, he thinks I’m crazy sitting up all night.🤪 get better.

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