Iron Infusion

[Jules1953]

I am having my first Iron Infusion on 15 November.

Recent Ferritin blood tests revealed my level was 50.

I asked my GP about having an Iron Infusion and she was happy to organise this for me.

This will be done at my local Hospital (I live in a country town) by a Doctor.

I have been feeling very tired, so I am hoping that I will notice an improvement in my energy levels.

And I am very interested to see if I notice any changes in my RLS.

Kind regards Julie McGowan from Western Australia

Update 16 Nov 2021 Iron Infusion.

Thanks to all who wished me all the best for my Iron Infusion (15 Nov 2021) and for the interest expressed.

The procedure went very well, I had no discomfort and no side effects. I was administered 1 gram strength over a 15 minute period in a vein in my arm. From arriving to leaving the Hospital I was there for approx 1 hour.

Last night I took my two Temgesic tablets as usual for controlling my RLS.

Today I have been feeling fine, no ill effects from the Iron Infusion. It can take approx 6 weeks for the benefits to be felt. I will keep updating this post as time goes on.

Prior to the Iron Infusion my ferritin level was 50. I was told just prior to having the Infusion that this is not usually carried out unless the person's ferritin level is below 30.

I feel very fortunate that my GP submitted a requested for me to have an Iron Infusion. I had mentioned to her that "people with RLS need to keep their ferritin level above 100. Information I had learnt from this site.

Kind regards Julie

[LotteM]

Good for you Julie. I hope the infusion will work for you and significantly reduce your RLS. Too bad it is not yet known how to assess in advance whether it will work or not. Please let us know, but remember that it can take several weeks.

[Jules1953 in reply to LotteM]

Thank you, I will keep you updated. Kind regards Julie.

[Hidden in reply to LotteM]

I just found this interesting paper (via the link posted by member Kakally below) which discusses two conditions affecting the outcome of ferric carboxymaltose infusions.

The conditions are lower serum % transferrin saturation and lumbosacral radiculopathy

sciencedirect.com/science/a...

[Jules1953 in reply to Hidden]

Thanks very much for sending through the link. I have had a read through the article. I will keep you updated as to how I feel after the iron infusion treatment. Kind regards Julie

[Elffindoe]

Let us know how you get on.

[Jules1953 in reply to Elffindoe]

I will certainly let you know how I get on. Kind regards Julie.

[Joolsg]

Really hope you see an improvement in tiredness and RLS. It can take up to 6 months to feel any improvement so be patient. Fingers & toes crossed for you.

[Jules1953 in reply to Joolsg]

Thanks, I will keep you updated.

[Hidden in reply to Joolsg]

Did you mean to write 6 weeks Jools? It's my understanding that full benefits are felt around the 6 week mark.

[Joolsg in reply to Hidden]

No- 6 months. I've read reports from trials/ studies in the US that it can take up to 6 months. I kept hoping this would be the case for me when nothing changed 6 weeks after my infusion. I realised I was in the 20% for whom it makes no difference (after 8 months).My ferritin is still 420 two years later, but zero improvement in RLS.

[Jules1953 in reply to Joolsg]

Thanks for sharing your experience after having had an iron infusion. Kind regards Julie

[Graham3196]

Good Luck. If it works out for you then all of us have some more hope.

[Jules1953 in reply to Graham3196]

Thank you, I will keep you updated. I have had RLS for 50 years. I started using Temgesic sublingual 200mcg tablets 10 months ago and I am very pleased with the way this medication controls my RLS. But I am very interested to see what results I get from the iron infusion. Kind regards Julie

[Jumpey]

Good luck.x

[Jules1953 in reply to Jumpey]

Thankyou, I will keep you updated. Kind regards Julie.

[Kakally]

I hope it works really well for you . Have you seen this article ?

karger.com/DOI/10.1159/0005...

[Jules1953 in reply to Kakally]

Thanks for sending through the link, I have had a read through the article. I will keep you updated. Kind regards Julie

[Anna1991]

That is fantastic. I really hope it works well for you!

My ferritin levels are 14 atm (in the last 3 blood tests, they were also below 30) and I'm currently fighting with my GP to get an iron infusion. He changed my iron prescription again, hoping that works...

I would like to know more about you experience once you've had if you don't mind sharing. The GP also highlighted several times that the side effects can be a lot...so it put me off a little, but my RLS has been so bad recently that I don't mind about possible side effects.

Anyways, all the best.

[Graham3196 in reply to Anna1991]

I had similar problems with several GPs before I found one who was willing to help me with an infusion. It was usual for them to warn me about the risks. When I pressed them for the details of the risk they went to water and waffled about the risk of any procedure that penetrates the skin or nonsense about the lack of control and other irrelevant matters. In other words there was no basis for their warnings. If you have RLS then that is a risk to our sanity! Don't waste time arguing with your GP, they cant change their mind without losing face. Find another GP as quickly as you can The sooner you act the sooner you find out if you are in the lucky group whose symptoms are significantly reduced by an iron infusion.

Anyway with such a low ferritin level I am surprised that your GP isn't pushing you to have an infusion to help with your apparent anemia. Perhaps your problem is beyond a GP you need to speak to some specialist just to find out what is going on.

I will send some information that includes some locations in the UK where people have reported they were treated with IVs. Some successful, some not, but no report of complications. Note that there are a some fairly rare conditions that prevent you having an IV iron infusion so you should find a doctor who understands the process and can explain it to you if you fit that category.

[Jules1953 in reply to Graham3196]

Thanks for sharing this information about your own personal experience, much appreciated. Kind regards Julie

[Jules1953 in reply to Anna1991]

Hello, yes it is new territory for me having an iron infusion. I am a little nervous about it and I hope I don't have any side effects. Sorry to hear that your RLS is particularly severe at present. What medication are you currently taking to treat your RLS?

Your ferritin levels are very low. I will keep you updated as to how my body responds to the iron infusion.

Kind regards Julie

[Hidden in reply to Anna1991]

Hi Anna, I would listen to your GP on this one, but that's me, no one else on here. I HATE iron infusions for healthy individuals such as yourself. Are you taking Melatonin by any chance? What about tryptophan or 5htp? What about any fertility drugs or injections? Any hormonal imbalances or breastfeeding going on?

Unless you're at the end of your rope, how about you give one or two more things a try before going down the opiate route. Try not eating after about 7pm (and make it a small evening meal) and until breakfast time - night after night. Next, check out my profile page. If I were to take iron in the morning or afternoon it would do zipadeedoodah for my night time RLS. If I were to take the impossible to digest and absorb form of iron called ferrous sulfate it would do nothing for me. Good luck!

[LotteM]

That is a very helpful reply, Graham.

[Lilcatfeet]

Like you, I’ve just had my blood work done as advised by the so helpful people on this site. Turns out my ferritin is 35. I am going to be in hospital/rehab for 3 or 4 months as I’m having my foot amputated soon, result of very complicated and aggressive RA. I don’t want to be dealing with awful RLS on top of that so will try the gentle iron. Wishing us both success….Interesting fact: in the general population the incidence of RLS is between 1.5 and 2.7% . In those with RA it is 30%!

[oldfidgetlegs in reply to Lilcatfeet]

Just wanted to wish you well with your forthcoming surgery. I have osteoarthritis in both feet and have had two ops on both as well as toes amputated but the OA is still in there and still painful to walk etc and even at rest. I did ask for amputation but this was refused by my surgeon. Post-op I was expected to keep my foot elevated for most of the day and night for six weeks - they had absolutely no idea how difficult this would be for someone with severe RLS and this turned out to be impossible resulting in a longer healing process. I hope you have emphasised how important effective medication for your RLS will be in recovery and that they take this very seriously. Sending all my very best wishes to you.

[Jules1953 in reply to Lilcatfeet]

I am sorry to hear what you are going through and your up coming surgery to amputate your foot.I wish you all the best for your surgery and the recovery process.

Please let me know how you are going.

I have written an update on how I went with my first Iron Infusion and attached it to my original post.

Kind regards Julie

[Lilcatfeet in reply to Jules1953]

Thank you Julie for the good wishes. It is a life changing surgery and the decision not reached without a great deal of soul-searching. The fact is that I can keep my foot but never be able to walk on it, or have it off, and, with a good prosthetic, walk again. A paradox.My pcp knows nothing about iron infusions and suggests iron supplement, which I will take as advised by this group.

The blood work indicates that I am not anemic, but am not distributing iron efficiently.

She also suggests Mirapex as the accepted first line of treatment for RLS so obviously she is among the vast majority of physicians not very knowledgeable about this plague. I was on requip for years, and, as it lost effectiveness, switched to Neupro patches. I fear I am starting to augment on them and can’t imagine going through the upcoming ordeal in raging withdrawal.

Both Gabapentin and Lyrica make me fall asleep involuntarily and inappropriately, so I don’t know where I go from here.

The foot problem stemmed from neuropathy, which is linked to RA, followed by Charcot foot. The foot is entirely collapsed and unless casted, forms bone deep ulcers with terrible infections. I notice many contributors to this site mention neuropathy. I would advise them to be scrupulous in foot care: examine them daily, wear good supportive shoes and orthotics. As an aside, these problems are common with diabetes which I do not have.

This group has been beyond helpful to me.

Thank you so much.

[NonnieJ]

I had an infusion almost a year ago as my level was 8. It helped a lot. Now my ferritin has come down again, below 60 but although the doctor requested another infusion, the haematologist refused. I cannot absorb iron through the gut, sothis was a good option.

I really hope you have a successful experience.

[LotteM in reply to NonnieJ]

That was mot a very helpful reaction from the haematologist, Nonnie. Has tour doctor explained to the haematologist that it is NOT about anemia, but about RLS and provided the information of the guidelines on iron for RLS? Maybe urge your doctor to try again - or with a different, more open-minded haematologist. Why would anyone withhold you an effective an quite safe treatment?

[NonnieJ in reply to LotteM]

She tried her best, so I asked her if she was ok if I were to write to the haematologist myself and argue the point. She said that was fine.

I haven't quite worded my letter yet,,,, just too weary, but I definitely will.

Thank you Lotte.

[LotteM in reply to NonnieJ]

Keeping my fingers crossed that writing yourself will help. Don't forget to attach the relevant paper. I assume you have it? Also consider to attach the recent update overall guidelines. Its section on iron is more concise and clear than the full paper.

[NonnieJ in reply to LotteM]

Thanks Lotte. Please could you send me the links if you have time. Many thanks.x

[LotteM in reply to NonnieJ]

Iron paper: sciencedirect.com/science/a...

Recent guidelines for RLS treatment: mayoclinicproceedings.org/a...

Good luck

[NonnieJ in reply to LotteM]

Brilliant. Thanks, Lotte.

[Graham3196 in reply to NonnieJ]

I am really confused by GPs and specialists resistance to IV iron infusions.

I see many people stating that RLS, or the treatment for RLS, has ruined the last 10 years of their life. I can't remember seeing one letter saying how their infusion went wrong and ruined a week of their life. Not everyone is helped but is anyone on record as being injured?

Doctor Buchfuhrer suggests that if your Ferritin level goes down in a short time then your GP should take measures to find out what happened to all the iron that was in your body. I think he suggested that something like internal bleeding of some sort was sometimes found to be the reason for the low iron problem and this possibly the source of the RLS.

The following is a rant about second opinions.

Watching my friends and relative over many years has convinced me that we should never accept a bad medical opinion and probably be suspicious of a good opinion. One friend demonstrates both cases. First he had symptoms of heart disease. His regular GP was unsympathetic and explained that he was overweight and getting old so he was probably going to die soon. Second opinion from a heart specialist was that he had suffered a deep vein thrombosis from plane travel and his lungs were clogged up with particles from a clot in his leg that was gradually breaking up. He could die or have a stroke at any moment. Straight into hospital and on careful clot dissolving drugs. Now he is fit for another 70 years. Same man had a spot on his arm that looked suspicious. His new GP said it was nothing to worry about. He visited another GP about something else and the doctor saw the spot on his arm and sent a biopsy off to a lab while cutting the spot out as a precaution. As you have guessed, it was a dangerous melanoma that would have killed him within some short time. Is he freakishly unlucky or are we all living one GP mistake away from the alternative?

Nonnie please write to your haemotologist and ask for a detailed explanation why you can't get another infusion. and at the same time get a second opinion on your iron infusion. The first opinion sounds strange.

[Jules1953 in reply to NonnieJ]

Yes I agree with LotteM , please persist with your request for an IV Iron Infusion. I have written an update on how I went with my first Iron Infusion and attached it to my original post.

Kind regards Julie

[NonnieJ in reply to Jules1953]

Thank you so much, Julie.I really appreciate your response.

That's really helpful.

I take Clonazepam at night which gives me a good night as a rule , but last night my husband had to get up for 2&a half hours because my legs were jumping so much.

I am surprised it didn't wake me, but it doesn't bode well. Makes me more definite about contacting the haematologist.

Many thanks again.

Nonnie

[HilsK]

How's it gone Julie?? It took about three weeks to make a noticable difference ... no RLS symptoms, more energy and bounce, no dizziness and higher O2 levels. My Ferritin went up to 128 but is now dropping again at 10 weeks. It is now 64. My energy levels etc have dropped too. My consultant wants levels kept above 100 and infusions so keep it there. I am interested as to how you have found it?

Hils X

[Jules1953 in reply to HilsK]

Hello, it is pleasing to hear that your RLS consultant is agreeable to you having access to IV Iron Infusions when your Ferritin level drops below a certain point. It seems that some RLS sufferers are being denied an IV Iron Infusion despite their Ferritin level being below 100.

I have written an update on how I went with my first Iron Infusion and attached it to my original post.

Kind regards Julie