how to get IV iron infusion

[Jukebox55]

i have had RLS for 30 years. Been on dopamine for 6 years. Shocked to read about how iron can help. Has anyone been able to get IV iron infusion? Who from? How best to go about it??

thanks!!!

[ChrisColumbus]

I think that Joolsg is the best person to advise you on this and other RLS matters in the UK

[Joolsg]

Iron pills/infusions are now first line therapy according to the Mayo Clinic Algorithm. However, you're on Pramipexole and mention you have trouble sitting in tje cinema.

Can you tell us the dose you take. Pramipexole and Ropinirole are no longer 1st line treatment because they cause a severe worsening of RLS( known as augmentation). Pramipexole over excites the D1 opioid receptors and they ramp up the RLS.

It sounds like you may be experiencing this. Raising serum ferritin above 100, preferably 200 can help to reduce the augmentation but it will find a way to break through.

So read the Pinned posts on Augmentation and look at the Mayo Clinic Algorithm.

You may have to slowly reduce Pramipexole to get relief.

Many of us have joined this forum because Ropinirole and Pramipexole caused Augmentation.

Uk doctors are reluctant to accept the link to low brain iron so most refuse to refer for infusions but there are ways round that. You can write direct to your local hospital haematology department with research papers or see a neurologist like Prof. Walker at Queen Sq who will consider infusions.

But, although raising brain iron helps the majority, many of us see no improvement and need to find alternative meds.

Pregabalin, gabapentin and low dose opioids are now used in place of Pramipexole and Ropinirole.

[Jukebox55 in reply to Joolsg]

Thank you so much for your reply. I am in shock to learn the problems with pramipexole. I take 4 x 0.088. I will read all about augmentation as you suggest. Do you have any suggestions for the best way to approach UK doctors. Is it a good idea to send them some of the interviews or articles presented here? Thank you soooooo much for your help and advice.

[Joolsg in reply to Jukebox55]

Sadly, UK doctors know ZERO about RLS or Augmentation. That's why I've been trying to get it taught.You are on a very high dose of Pramipexole. UK doctors don't know what Augmentation means. They assume it means an increase in the dose to achieve the same result. That is tolerance.

Augmentation is a drug induced worsening of the RLS.

As the US experts say, if you up the dose you are 'pouring gasoline on the fire'.

Have a look at the pinned post on Augmentation and the Mayo Clinic Algorithm.

It's extremely common.

The only solution is to reduce Pramipexole very slowly by half a 0.088 pill every 2 to 3 weeks. Symptoms ramp up and you may need low dose opioids to settle the symptoms.

The recommended treatment now is

1. Ensure serum ferritin is above recommended levels with iron supplements or infusions

2 Replace meds that worsen RLS like anti depressants, anti histamines, statins, beta blockers, PPI meds et.

3 If RLS persists, start treatment with pregabalin or gabapentin.

The NHS and NICE guidance in the UK is already outdated as it still includes dopaminergic drugs as first line treatment.

We have to research and educate ourselves and help each other off these drugs when Augmentation hits.

Most people will need to replace Pramipexole with an alternative med and the usual replacement is pregabalin which you start about a month before the last dose of Pramipexole.

Withdrawal can be hellish for most but once through it, the RLS settles and you will be in a much better place.

Read everything you can. The more yiu know, the more you can persuade your GP of how to treat you effectively.

[SueJohnson]

Before you try to get an iron infusion or take iron tablets, you need to have your ferritin tested. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not , post them here and we can give you advice.

[Jukebox55 in reply to SueJohnson]

Thank you so much for all your advice. I am learning loads from this site. I am stoppping alcohol. Have found a weighted blanket really helps me sleep. The only other medications I take are thyroxine and acicyclovir. Do they affect RLS? I will keep reading! Thanks so much. Invaluable support here.

[SueJohnson in reply to Jukebox55]

Thyroxine makes RLS worse in many and unfortunately I don't know of a safe substitute. Acicyclovir should be OK

[Hidden in reply to SueJohnson]

The article is below.

[SueJohnson in reply to Hidden]

Thanks

[Hidden in reply to SueJohnson]

I would be very curious to know if the poster’s RLS began at same time as starting the anti-viral. It could potentially help other people.

[Hidden in reply to Jukebox55]

The Acyclovir may be contributing to your RLS. pubmed.ncbi.nlm.nih.gov/186...

[SueJohnson]

As Joolsg says you may be having augmentation since the dose you are taking no longer controls your symptoms. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. If you feel this is the case, post back here and we can give you some advice. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...

[SueJohnson]

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga. Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute

[WideBody]

it starts with a morning fasted full iron panel. Do not supplement before the test.

Everything you ever wanted to know about RLS and iron is here, complete with a flowchart can be found here.

reader.elsevier.com/reader/...

Good luck

[btthemd]

You need to get iron checked to see if you need it.

[Duckz]

I am having my 2nd iron infusion this year(the last one was in January). Myferritin level was 87, and it's recommended to be over 200 if you have RLS. I have to continue to persuade the doctors every time. I always feel better when I have it done, and RLS symptoms go remarkably down. I am taking 0.5 Sifrol too. I got all this advice from a Drcand sleep specialist after i went in to a hospital sleep study lab and was monitored with electrodes for 24 hours. You must always have your ferritin checked and not just your iron.

[Hidden in reply to Duckz]

what type of iron do they generally use for your infusions?

[Duckz in reply to Hidden]

This is the prescription they give me for the infusion

Iron infusion

[Hidden in reply to Duckz]

How long after infusion do you get relief?