Multiple Iron Infusions.

[Graham3196]

I had an iron infusion two years ago for RLS. Before the infusion my ferritin was down to about 100 and it rose to about 350 Unfortunately my RLS didn't respond to this and I couldn't detect any improvement over the next 12 months. My ferritin decreased over 2 years to 200 and then gradually declined to 68 a month ago. My RLS has become worse over the last 6 months and I have finally given in to take a drug for it. I have been taking 200mg of Gabapentin which works well. I think I am feeling tired and slightly dizzy as possible side effects of the Gabapentin. I would like to do away with the Gabapentin so I thought the best starting point would be to try another iron infusion.

I was advised by a sleep Doctor that the failure of the first infusion to make an improvement in my RLS meant that there was no chance that a second or third infusion would be beneficial.

Is there any evidence to support the statement that if the first infusion fails then extra infusions will also fail.

Or to put it the other way around does anyone have experience of relief coming only after a second or third infusion.

Thanks to anyone with experience.

[SueJohnson]

Since your ferritin was already 100, it is not surprising that your RLS did not show any improvement. It is much more likely to show improvement if your ferritin is below 100. Print out the appropriate section section of the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...

Although this will explain that your ferritin needs to be over 100 it will not recommend an infusion unless your ferritin is between 75 to 100. or a more rapid response is desired.

Also you could use your response from Dr. Buchfuher.

If your can't get an infusion take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.

Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

How long have you been taking the gabapentin? It can take up to a month for the side effects to lessen or disappear.

If you have been taking it that long then you might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other.

You can switch directly to 25 mg pregabalin.

[catherine1712]

hi, I had an iron infusion Ferinject of 500ml twice 3 years ago. unfortunately, the serum ferritin went up to 350, and ever since it is still now at 200 which is higher than the above range. It made me feel sick

[Drls in reply to catherine1712]

Hello Catherine - did it help your legs though? And also why did you have it twice ? I’m due to have an infusion next week and have been trying to find out other people’s experiences.

Thank you Dawn

[SueJohnson in reply to catherine1712]

Nothing wrong with 200. Some people with RLS actually need it to be higher than 200 or even 300. Mine is over 500.

[amrob123]

I have had 5 or 6 iron infusions Graham. The past 3 or 4 were specifically to address RLS/PLMD. I always feel that things improve slightly with an iron infusion - maybe 10 to 15 percent - but that may just be a placebo effect.

I haven't noticed increased benefits with subsequent iron infusions. I'm inclined to think that if you didn't see any benefits with the first, then you're not going to see benefits with subsequent infusions.

I did experience hypophosphatemia with the most recent infusion and read that the more infusions one has, the greater the likelihood of this happening. It was not a pleasant experience and took some weeks to resolve.

I assume that you've investigated the reason for your ferritin dropping.