Retitled: Phase II, let it begin.

[ViewsAskew]

I wonder if you could write to Dr Earley and ask him? I think his email is on the Johns Hopkins website. He would know the answer, Corrie. I do not.

I only know that Dr B has said that oral iron usually only helps up to about 50-75. I don't know what he meant - that it usually only can get it that far, or that after that, it isn't effective. Several people here - including you and Beth - have gotten it higher than 50-75 using oral iron, so maybe it's not as effective? I really do not know.

I've heard the same about tolerance and progression. The only reason I'm thinking it *might* be tolerance is that for two years I alternated with pramipexole. During that time, I had no change. But, within a year of being only on the opioid, I noticed I needed more on occasion. Over time, that changed to about 10 days before my period. Then it changed to 2 weeks before my period. Then it was all the time.

I likely won't ever know which it was....

[Rustsmith]

Add me to the list of people who was able to use oral iron to go well above Dr B's guideline. I was taking 325mg twice a day for about six months between checks. I started at 43 and ended up around 365. I was told to stop taking iron, but then got another check (when I changed doctors) about 7 weeks later and had dropped to 165. I decided to go back on 1/day and will see where I am when I go back in late January.

[cornelia]

Thanks Ann, I might try dr E but I don't know if I have the courage because he is such a busy man.

Steve, I noticed the same thing. A few weeks after my ferritin was about 290 and I had stopped the iron pills my ferritin dropped to somewhere in the hundreds. I now know that I have to take 1 pill every other day to keep it around 120.

Corrie

[badnights]

I got my iron levels with pills from 11 to 290 or so and I didn't notice improved symptoms. I wonder if it might work with infusions. Should I ask my neuro?

Drs. Allen and Earley have found that about 1/4 of WED patients do not respond to iron infusions. Their WED seems to be dominated by something other than iron. I wonder if you might be one of them, since you got your ferritin so high without any improvement in symptoms - or if you simply didn't get it high enough. I know Dr Earley said he would give iron infusions to people whose ferritin was that high already, depending on circumstance, because for some people, 290 is too low.

Dr. B's statement about oral iron was probably the one we've heard, that iron is absorbed through the digestive tract less and less efficiently the more there is of it in the body. On average, once a person's ferritin is above - what was it, 70? - then getting it up higher requires larger doses of oral iron. For example- I'm making these numbers up, more or less, but it's the general idea - a person may need a single 325-mg ferrous sulfate pill daily to raise her ferritin from 12 to 50, but then require two pills to raise it from 50 to 90 and four daily pills to raise it over 100. That sort of thing. Since it's a statistical finding, there will always be people who are different, like Steve who went all the way to 365 on oral iron with only 2 pills daily.

[cornelia]

Thanks Beth, I agree that iron infusions are not for me.

Actually I asked dr B himself and he said that it is his best guess that I would not benefit from them, but he can't say that with 100% certainty. Like you said, 290 may be too low for me and others of course who experience the same thing. In the next decade they will probably know more he says.
Corrie

[ViewsAskew]

I have a feeling that I need my iron to be VERY high to get benefit.

It's two weeks after I first noticed an improvement and it's already waning - after the first 7-9 days, I started to need a bit more each night. I'm still taking less, so that is good. I need to get the blood test this week to see where it is. Because I know it needs to be higher than where I am now to sustain the reduction.

[cornelia]

Not the result you waited for but not a surprise I guess. I'm so sorry. Maybe you are right and do need more infusions. I wish the researchers will put iron infusions for people like you, me and others in the same boat high on their list.
Corrie

[ViewsAskew]

I was not surprised, Corrie, but I was a bit sad. It lasted a bit longer than last time! Last time it was so fast I wasn't sure it was real. This time it felt very real.

I still do not have the darn bloodwork order from Dr B's office manager. I want to take the test immediately and last time my doctor did the wrong test, so I don't want to walk over until I have the order from Dr B in my hand.

Yes, I do wish they would spend more time researching those of us with the most severe form. I realize we are a small percentage of people - but what works on others doesn't necessarily work for us. I am happy that many people with treatable WED have options that didn't exist in the past. Now we need better options for the refractory cases.

[cornelia]

I am quite sure that the reason that some of us have to up their dose of an opiate quite soon is the fact that their limb movements are so strong. It might not be tolerance at all but the severe jerking limb movements breaking through the meds. The other day dr B wrote that opiates only can tackle these movemenst for 50 to 60%.
Corrie

[ViewsAskew]

Definitely a possibility. Husband says he still sees me moving on opioids, but with much less intensity. I am movement free using DAs.

[badnights]

It lasted a bit longer than last time! Last time it was so fast I wasn't sure it was real. This time it felt very real.

Don't stop now, Ann! It might take 5 or 6 infusions before it starts to "stick".

[ViewsAskew]

ALl benefits are lost as of now. I'm back to needing the same dose I did before the infusion.

I honestly do not know how Dr B feels about it. I am relatively sure that the docs at Johns Hopkins would keep infusing me. But, Dr B may not feel the same.

I am waiting for results of my bloodwork.

[cornelia]

:AbstractSend to:
Panminerva Med. 2014 Dec 22. [Epub ahead of print]

Efficacy of the Low-Dose Saccharum Iron Treatment of Idiopathic Restless Legs Syndrome.
Zhang X1, Chen WW, Huang WJ.

Author information
Abstract
AIM:
The study aim was to determine the efficacy of low--dose and high--dose Saccharum iron injected intravenously in patients with idiopathic restless legs syndrome (RLS) by detecting levels of serum ferritin (SF) and international RLS Severity Scale.
METHODS:
For this purpose, 38 patients with idiopathic RLS were randomly divided into the following two groups: low--dose group (18 cases) and high--dose group (20 cases). Low--dose group received Saccharum iron intravenously (200mg/dose); once a week for 5 weeks with a total dose of 1000mg. High--dose group received Saccharum iron intravenously (500mg/dose);; once every two weeks for 4 weeks with a total dose of 1000mg. The pre-- and post--treatment (at 2, 4, and 6 weeks) level of SF and RLS scores were determined and the differences were compared between two groups.
RESULTS:
Post--therapeutic SF levels increased significantly in both groups as compared with before treatment (P<0.05). At 6 weeks post--therapy, SF levels in low--dose group were significantly higher than those in high--dose group (P<0.05). The clinical symptoms were improved and RLS scores were lower than pre--treatment ratings in both groups (P<0.05). After 6 weeks of treatment, RLS scores of low--dose group were lower than those of high--dose group (P<0.05).
CONCLUSION:
Both the low--dose and high--dose Saccharum iron treatments increased the SF levels and improved clinical symptoms in patients with idiopathic RLS; however, the low--dose iron treatment was found to be more effective and had fewer side effects.
PMID: 25532586 [PubMed - as supplied by publisher]

FYI: just read this.

[ViewsAskew]

Thank you, Corrie! That is fascinating!

I do not remember the details, but I seem to recall that om the Johns Hopkin's research, iron sucrose (saccharate, saccharum) was not supposed to be as effective as the low molecular weight iron. Maybe I am remembering incorrectly! Or, maybe the key to using it is to use smaller amounts more frequently.

[badnights]

the Johns Hopkin's research, iron sucrose (saccharate, saccharum) was not supposed to be as effective as the low molecular weight iron. Maybe I am remembering incorrectly!

No, you're remembering correctly. Interesting, isn't it? But they didn't compare with iron dextran or with controls.