Iron therapy with normal ferritin

[fallingoffthebed]

My husband has had RLS for about 40 years. He takes Tylenol4, Oxycodone, gabapentin and ropinirole and still gets symptoms. I want him to try iron, but his ferritin is 183 (reference range 2-322). Does anyone think he will benefit from iron? Thanks.

[Rustsmith]

If his ferritin level is 183, there is only a small chance that increasing it will provide any added relief. For many it is a challenge to get the ferritin level above 50 to 100. However, as you will see stated throughout the discussion board, each of us is different. It might be that your husband could improve with a higher ferritin level, but odds are that he would not.

Two other points to keep in mind about ferritin are: 1) increasing it too high can cause problems, although RLS might help limit that issue and 2) high ferritin levels can also be a temporary condition caused by some form of infection.

But with that said, I have been able to keep my own ferritin level over 250 now for over a year and that has not provided me with any benefit that I can see.

[ViewsAskew]

The problem appears to be that increasing it doesn't mean we can get the iron into our brain, where it is needed. It works for about 80% of us.

I am not sure exactly how high mine needs to be to get a benefit because my doctor ran the wrong test at the time, but I know it's more than 170 (where it was when it stopped helping). I received a second infusion last year and had about a 40% reduction in the drugs I need to use. It only lasted about 4 weeks. So I know that the level is likely in the 200s, maybe even the 300s.

[figflower]

Do you feel like letting your husband be a guinea pig for MY own personal selfish reasons? I agree with Viewsaskew that we should be looking at our "brain" levels of iron, not so much our body. And there may be some correlation between the two but we with RLS need quick, continual relief. Someone on here received iron infusions many years ago and it did NOTHING for her RLS. Then I noticed that she said that they infused "iron sucrose." As far as I know, sucrose (a double sugar molecule) will NOT cross the blood brain barrier ("BBB"). Maybe that's why it didn't help?

I have intermittent RLS. When I get an attack I RUN for the iron bis-glycinate. That is the ONLY form of iron that works for ME and it works each and every time without fail, ever. But I have to take it on an empty stomach with water right when an attack begins or if you know your RLS starts every night at 10pm then you can take it at 9pm because it takes an hour to kick in. You CANNOT take it with any milk or magnesium or calcium or anything other than water. And if it were me (and your husband is not me) I would take the iron away from all of those pain relievers he is taking. The iron bisglycinate is also known as Easy Iron and Gentle Iron. I did some research and it sounds like "glycinate" can cross the BBB and maybe that's why it works for me whereas plain old ferrous sulfate that you buy at the drug store never relieved MY RLS symptoms.

I have had RLS for nearly 40 years now as well. But it was mild and intermittent until I started taking melatonin every night and benedryl and Tagamet as needed. Then the RLS was the devil incarnate. But for the iron I would have started taking everything that your husband is taking and much much more. Is it possible that your husband is consuming some substance that is making his RLS worse that it has to be? I have read that the following substances can make RLS worse: statins, metformin, warfarin, beta blockers, HRT, calcium channel blockers, antihistamines, antacids, anti-depressants, diet coke, splenda, aspartame, melatonin, 5htp, tryptophan and on and on. You almost have to give every pill you take the hairy eyeball and assume it might be making your RLS worse than it has to be.

Good luck and by all means give the iron (bis-glycinate) a try for a few nights and then after that only with a doctor's permission. Oh by the way, over-eating can make RLS worse while under-eating MAY help the symptoms of RLS.

[fallingoffthebed]

Thanks, everyone for your input. Will try to get the doctor to refer to a center specializing in RLS and see if they will try an infusion.
Robin

[badnights]

How long has your husband been taking ropinirole, and what is his current dose?

He may be experiencing augmentation, which is an exacerbation of symptoms caused by the very medication that's supposed to help them. It happens with the dopamine meds - ropinirole, pramipexole, and levo-carbidopa. It's very common (75% of all users will eventually suffer it) but relatively few doctors know about it yet. The higher the dose and the longer one has been taking the medication, the more likely augmentation will happen.

He may be augmenting if, compared to when he started the ropinirole, his symptoms
- have spread to other body parts
- start earlier in the day
- start sooner after coming to rest
- have intensified
and if that worsening can't be explained by normal progression of the disease. (Normal progression is usually slow, except in some cases of secondary WED/RLS when the precipitating condition comes on suddenly.)

It is probably important to determine if he is augmenting and to stop it, to get his symptoms back to baseline, before trying iron infusions, which may not be effective if he is augmenting, although I am not sure of that.

The solution to augmentation is to stop the dopamine med completely, replacing it temporarily with an opioid to deal with the withdrawal, and longer-term with something else (an anticonvulsant, an opioid, or a combination). Another solution that has been used successfully, if temporarily, is to split the dose and take part of it earlier in the day, but if he has been augmenting for a while that probably won't work.

He needs to discuss augmentation and getting off the ropinirole - if he is augmenting - with a physician who has experience with difficult cases of WED/RLS.