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Posted: Wed Dec 14, 2011 6:54 am
by fraujoolie
Has anyone really (I mean, REALLY?) seen a huge change in their symptoms with iron supplements?

Just to rant, I called Dr. B to talk about my increasing symptoms, and he asked me to come in for an office visit. So I made an appointment for two weeks later. It takes me about an hour to get to Dr. B's office from my house. I wasted a whole morning... four hours... (he was running 90 minutes late for my appointment, while I watched three or four different drug reps go in and out, chit chatting with him and the staff... I actually sat there waiting to be called as they talked about the merits of different printer brands, I was so annoyed) with a cranky 8 month old baby, to only be told to increase my iron supplement to 2x daily and "do [my] best" to get a solid 8 hrs sleep per night. With two little kids? AND these symptoms? Hah!! A $50 copay for that, too. I was totally unhappy with this appointment and drove home in tears. I am so tired. I don't feel well. I feel like something is honest-to-God wrong with me physically, but nothing is coming up. My OB/GYN ran my blood levels and everything is normal. Including the iron. But it isn't super high, and Dr. B says RLS patients should be super high in iron.

OK, my rant is over. Onto the question.... have you really seen improvements with increased iron? I am miserable with increased PLMD and gnawing urges to move, too. I have been taking one 65 mg iron pill per day (on top of two prenatal vitamins... I'm still nursing a bit), along with 15 mg Methadone and 5 mg generic Ambien. I have tried Lyrica and Gabapentin in the past, but it didn't really help (and Lyrica is too expensive for me... no name brand Rx coverage). I don't know what else to do. I'm miserable.

Posted: Wed Dec 14, 2011 8:26 am
by badnights
Julie, do try the iron. I had a VAST improvement by raising my ferritin. (You are getting ferritin checked as well as the more-usual iron counts, right?)

I took ferrous gluconate (1 pill) daily for months with no improvement. I switched to ferrous sulfate and within 2 weeks my symptoms improved to the point that my meds were actually covering them, for the first time in 3 years. Then over the next 3 months they worsened again. I uppped the iron to two pills daily (300mg ferrous sulfate, 65 mg elemental iron) and the symptoms again were controllable by my meds. I dropped back to one pill and they came back; up to two and they went away. If I forget my iron, I know it within a day.

Another thing that I've found, as well as a few other people on this board, is that vitamin D makes a real difference. I currently take 3000 IU daily, have been for almost a year, and my D has not reached toxic levels. When I lower the D (I did twice as an experiment) I experience worsened symptoms after about 2 weeks.

When you take the iron, take it with 250-500 mg vitamin C, which is critical for absorption, and if you can bear it, on an empty stomach.

I do hope you're feeling better than when you posted, it's miserable to be told something ridiculous like "try to sleep" (hello! do you think I'm trying to stay awake?). I assume you will check back in with him if doubling the iron doesn't work, and insist that you have a real conversation about it. {{{Julie}}} this can't be easy for you.

Posted: Wed Dec 14, 2011 10:42 am
by cornelia
I also think that raising ferritin can help, sometimes even a lot, but not for everybody. Please try, maybe you will be pleasantly surprised.

However, what I have found is that my PLMD is worse when I'm only on an opiate and is better when taking a low dose of a DA with it. I don't know if it will help but maybe you could try that too. Maybe supplementing only every other day for augmentation/tolerance issues, that's what I do. Dr B writes in his books that opiates work not as well for PLMD as the DA's.

You didn't have a nice experience with dr B; I feel sorry for you. I have a very nice neuro myself, but sometimes I am not happy too when I have spoken to him. Although it's not right, these things happen sometimes. I also find that the next appointment is often better, because deep in their hearts these docters know when they have not been very nice the last time they saw you.


Posted: Thu Dec 15, 2011 2:38 am
by TimG
My ferritin was only 20 due to frequent whole blood donations (every 8 weeks). I stopped donating for awhile, took a daily iron tablet (ferrous sulfate), and the ferritin went up to 45 after three months. My RLS symptoms were worse when the ferritin was low, plus I was tired because of a lower red cell count. The change was noticeable but not dramatic, because I still experience RLS symptoms with the higher ferritin level.

I've known for many years that I had RLS, but didn't have a name for it until a sleep specialist diagnosed it about a month ago and prescribed pramipexole 0.125 mg an hour or two before bed. My sleep has improved as a result.

What I do about the blood donations, which I like to do because people need it, is to donate whole blood two or three times a year (four months or more between donations), and continue to take iron supplements. I donate platelets more frequently, where a machine skims off the platetlets and returns the rest of the blood, including the red cells. The platelets are used for cancer patients, organ transplant patients, and others who need platelets to help their blood clot.

Posted: Thu Dec 15, 2011 6:06 am
by badnights
TimG: That's wonderful that you've found a way to keep on helping people despite the RLS/WED.

cornelia: What DA are you taking with your opioid?

Posted: Thu Dec 15, 2011 8:16 am
by fraujoolie
What's a "DA?" Vitamin D? I'm confused. Or maybe just very tired... :P

Thanks for propping me up!

Posted: Thu Dec 15, 2011 9:49 am
by Polar Bear
DA - Mirapex, Requip or Sinemet.

Posted: Thu Dec 15, 2011 1:19 pm
by cornelia
Beth, with Requip.


Posted: Thu Dec 15, 2011 6:31 pm
by fraujoolie
Ah, no wonder I didn't know what "DA" was. I can't take them. I augmented on Mirapex a few years ago. In fact, never went down to my "baseline" and have since had arm symptoms. Mirapex ruined me.


Posted: Fri Dec 16, 2011 2:23 am
by sleepdancer
Julie, I take iron but I admit it is haphazard. Couldn't even tell you which kind I take or the amount. Between that and the Vit D and magnesium, I do feel my daytime RLS is much more tolerable. I am still doing well most nights just using the TENS Unit and no meds for the PLMD. I will occasionally take ibupropen at bedtime to help with arthritis pain. My worst nights using only the TENS without meds are still dramatically better than my best night on any of the meds I tried. I can count the nights on my fingers that in the past year have been even close to miserable, and admittedly, my occasional use of caffiene late in the day probably was the culprit.

Do you think you should tell your doctor, maybe even in writing, exactly what you've told us here? It's a problem you don't want to experience again. If you did, others have too. I understand you must have been quite disheartened. I have left the doctor's office and sat in the car sobbing from being left feeling so hopeless and abandoned by the medical professionals I depended on to help me. And I didn't even have a baby to deal with, so my heart goes out to you.

By the way, this L.A. weather is so chilly I thought I was back in Ohio. :)

Posted: Fri Dec 16, 2011 3:33 am
by ViewsAskew
DA = dopamine agonist.

Visits like that are the pits. I hope it never happens again.

Posted: Fri Dec 16, 2011 9:15 am
by badnights
Julie I forget your medication history. Have you tried Requip? You probably know already, but augmenting on one does not mean you'll augment on the other DA.

Personal experience: permanent worsening from Requip augmentation. Current situation: I 'm on hydromorphone. I use Mirapex now and again when the HM is not enough (but it makes me sleepy). I use Sinemet (yes! the evil Sinemet) occasionally when I need fast relief (for a daytime nap or at 4 AM).

The idea of adding a DA to deal with residual symptoms that are not being affected by the methadone is an interesting one and I think has a valid base. The different meds clearly do address different symptoms

eg. (for me) gabapentin dulled the electrical sensations but left the urge to move; a consequence was that I could replace big movements (walking, lifting weights) with incessant small kicks while lying in bed (awake). Codeine by itself did the opposite: rit emoved the urge to move but left the electrical sensations, so I would lie huddled in a ball very tense, but not need to move. Neither situation allowed sleep, of course.

Posted: Fri Dec 16, 2011 6:28 pm
by Polar Bear
It has been mentioned in other threads about taking an iron supplement and in particular Ferrous Sulphate. My last ferritin was somewhere around 60 which is pretty good. I understand that nearer 100 is recommended for us sufferers of rls/wed and so today I started on Ferrous Sulphate 200mg = to 65mg ferrous iron, and have taken it with 500 vit C as mention by badnights earlier in this thread.

It will be interesting to see if there is a change in my next ferritin reading.

Posted: Fri Dec 16, 2011 6:35 pm
by Chipmunk
I found the iron helped but only about 20%. The Vitamin D helped the most.

Posted: Fri Dec 16, 2011 7:30 pm
by Polar Bear
I've also bought Vit D & Calcium. The vit D has some strange dosage symbol 5ug - does anyone know how this compares to the IU table.