RLS & Iron infusion seems to be working!

[JPB5]

Rec'd Iron Infusion and it WORKED........

Asked my neurologist to try the iron infusion, even with normal levels of iron after receiving my blood work last year. Rec'd the iron back to back weeks Dec. 1st. 2020 I have been on 1mg Neupro for 6 years with increased restless leg issues the last 6 months before the infusion of 2020.

As of three weeks, ago I have had very minimal restless leg issues. AMAZING!

So, now what do I do to wean off the patch?

IS THAT THE BEST THING TO DO? I assume it is, and do you get infusions on a yearly basis?

Thanks

Jim

[Joolsg]

Fantastic news Jim. You’re in the 60% group who benefit from IV iron infusions. Apparently it can last more than a year but I suggest you ask for blood tests every 6-8 months to monitor levels and as soon as they drop schedule another infusion.

If you want to reduce the 1mg patch you should try cutting it and try to reduce by 0.25mg every 2-3 weeks. It says you can’t cut the patch but most people do.

You may still have withdrawal symptoms so ask for an opioid to cover the 3-4 weeks after the last dose of the patch.

[Munroist]

Hi Jim, sounds great, very pleased for you. Could I ask a couple of questions please? What infusion did you get? Did you check ferritin afterwards and if so what was the level? Was this on the NHS? How long after the infusion was it before you saw improvement? Thanks.

[Joolsg in reply to Munroist]

Hi Munroist,

I got an Injectafer iv iron infusion on the NHS. I wrote directly to the haematology department at my hospital with a copy of the research article showing Iron helps RLS ( they need ‘evidence based’ research). They agreed to see me & told me to ask GP to write formal referral. My serum ferritin was already at 145 but they still agreed- after the infusion it was 785! Sadly, it made absolutely no difference at all to my RLS ( I’m in the 20% for whom iron infusions don’t make any difference).

However, as they help 60% of RLS sufferers it’s definitely worth pushing for a referral. Research article link attached.

sciencedirect.com/science/a...

[Munroist in reply to Joolsg]

Brilliant. Thank you.

[Ruzi in reply to Joolsg]

Hi Joolsg

Can I just ask did you write to your local hospital hematology department or a specialist place and were you already under the care of the hospital?

[Joolsg in reply to Ruzi]

I just searched on the internet for haematology dept at my local hospital and wrote an email to the head of the department. I attached a copy of the article from Sleep magazine and explained that 60% of sufferers had dramatic improvement which would mean fewer meds & savings for the NHS. One of the team telephoned me to talk further- they had a team meeting and the team thought the evidence was compelling. All I had to do was ask my GP to make the formal referral.

This was pre covid though- I suspect the delays in treatment due to lockdown etc means there would be a delay anywhere now.

Good luck.

[Ruzi in reply to Joolsg]

Great Thanks

[WideBody]

Congratulations. I am also one of the people that benefited it an iron infusion. The usual route is to do another morning fasted iron panel at 8 weeks out. If you do it sooner the results may be skewed. Did by chance get you Transferrin Saturation Percentage prior to your infusion? Mine was low, yours may have been as well. (Iron deficiency without anemia).

[JPB5]

Thanks everyone for the comments. My iron levels where at the normal range before I got the injectofer. I asked my GP for a script and she thought I did not need it. Went to my Neurologist and asked him to do the script and he agreed. I am going to get my blood tested this week. Have not done that since I received the iron infusion.I did not check out before my infusion the:Transferrin Saturation Percentage. Maybe I should have?

Started to slowly get off the patch this week.

[Covenant1962]

Great to hear that you have had some relief after the infusion. Is this something a neurologist has to be involved with or can a GP arrange this?

My issue, having read that iron is metabolized in a number of different organs in the body, is that even if you have a high ferritin count in your blood there is no guarantee enough iron is available in your brain. Therefore to discount iron as a reason for my RLS I was thinking of pursuing an infusion.

Regards

[Joolsg in reply to Covenant1962]

Hi Covenant

Read my reply above. You can write to your local hospital haematology department with evidence that injectafer infusions help RLS. I did this as I knew my GP wouldn’t listen. The haematology department agreed, based on the evidence, and my GP then wrote the referral letter.

Sadly, I’m one of the 20% for whom infusions didn’t work. The odds are in your favour as they help 60% dramatically.

[Covenant1962 in reply to Joolsg]

Thanks Joolsg, I’ll give that a try. Sorry the procedure didn’t work for you.