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[ViewsAskew]

What do doctors who know about WED/RLS recommend you take if ferritin level is below 100? Opiates not an option for me, serious family history of opiate addiction.

One thought - even though you have a history, the research shows people with WED almost never abuse. It's as if it just makes something "right" for us. We even have one member here is was an addict before he needed it for WED. He still uses methadone - he has someone give him his meds daily. He hasn't had any issues and has been doing this for several years. Just something to think about. (oh - just remembered this, too....for what it's worth, my dad died an alcoholic and prescription addict - I've had no issues with them).

At any rate, not saying you SHOULD, rather that it may be possible if you WANT.

Doctors "in the know" are starting people on gabapentin encarbil (Horizant) more frequently, I think. Dr Buchfuhrer told me during my last appointment that he has had very good luck with it. It's not until that, regular gabapentin, or pregabalin (Lyrica) don't work that it's gets tricky.

In his last email to me (I had a question about my meds), Dr B suggested that the doctors are really suggesting alternating things - not a long time on anything. I know that's the only way I've found it to work. Although I've severely augmented on every DA I've tried, I can manage a DA one day, an opioid the next, and back and forth.

[aveerik]

Also the Mirapex or the trazadone have helped a lot, I feel like crap in morning but I am hoping those symptoms go away soon.

[ViewsAskew]

Also the Mirapex or the trazadone have helped a lot, I feel like crap in morning but I am hoping those symptoms go away soon.

When I used trazedone, I quickly got used to it - maybe a week? It actually didn't work as well to help me fall asleep after that, either. Like I just got used to it.

I think there is only one was to avoid eventual augmentation - don't take it all the time. If the pramipexole works and you adjust to it, you may want to consider using something else every so often - on the weekend, once a month for a week....something. Now that people have been on these drugs for a long time, the rate of augmentation just keeps getting higher. Given how much difficulty augmentation causes, if I were just starting to take these drugs, I'd do just about anything to avoid it!

[badnights]

My doctor rx'd 0.125mgs of Mirapex. My ferritin level was 55 but wondering if accurate since I started taking iron a week before.

As Ann mentioned, a week is not long enough. What type of iron are you taking, and how much? The sulfate or fumarate are absorbed better than the gluconate, and any of them should be taken on as empty a stomach as possible, with vitamin C (eg. a 200 mg pill), which is necessary for absorption.

Note: DA = dopamine agonist = pramipexole/Mirapex, ropinirole/Requip, rotigotine/Neupro patch

I think there is only one was to avoid eventual augmentation - don't take [the DA] all the time. If the pramipexole works and you adjust to it, you may want to consider using something else every so often - on the weekend, once a month for a week....something. Now that people have been on these drugs for a long time, the rate of augmentation just keeps getting higher. Given how much difficulty augmentation causes, if I were just starting to take these drugs, I'd do just about anything to avoid it!

I can't emphasize enough how bad augmentation can be. I think there are mild cases, too, but mostly they are bitter torture. Imagine your worst WED/RLS night, magnify it hugely, and make it never-ending.

The second link in my signature leads to a post with a number of links. The Frauscher link established the connection between low ferritin and augmentation on DAs; the Buchfuhrer and Johns Hopkins links suggest that people with ferritin below 100 are at greater risk of augmentation and should not take DAs.

I am guessing that an RLS/WED specialist might recommend Horizant for you, or Horizant plus tramadol or codeine, until you got your ferritin up .... but check with Dr Buchfuhrer personally, because he will answer your emailed questions. He is an angel that way! somno@verizon.net

[aveerik]

I am taking 325mg ferrous sulfate with 500 mgs vit c.
Okay augmentation sounds completely unbearable. My doctor knows nothing about WED, the first bad episode I had I told her it was in my arms and legs and she told me RLS doesn't happen in your arms. I have Kaiser insurance and she is my 3rd pcp and yes I need to find a better doctor.
I will e mail Dr. Buchfuhrer with very concise questions and see what happens, I would totally be willing to pay for telephone consult or what ever he would prefer.
Thanks so much, I really don't know what I would have done if I hadn't found this board, I felt like I was going crazy.
Robin

[ViewsAskew]

When did it start in your arms? My brother's has been worse in his arms for many years - he rarely gets it in his legs. Mine is only in my arms when something is exacerbating mine - like augmentation!

And, yes, augmentation is unbearable!

Many of us actually fly to see Dr B and have him as our Dr. I do. In a city like Chicago, you'd think I could find someone well-versed, but not so far. I've sent emails to or called over 50 doctors and have seen at least ten. I always end up back in California. I'm lucky to have family and friends in So Cal, so I fly in, stay with them for a few days, see the doctor, and I'm happy. Because I have a large deductible, I actually pay about the same annually as I did when I had to see my doctor here every few months - Dr B and I just email back and forth. I email his staff, they call in meds, we try things...and I'm mostly happy .

[aveerik]

Where is Dr B located? At this point I am willing to fly to the moon, on second night of no sleep, I even took 2 Mirapax. I can take up to 4 but don't want to do to side effects.

It has always been in my arms I think, and I think the arms are more unbearable then the legs.

Off to air box my arms until something stops or I pass out.

[Polar Bear]

aveerik - This link will take you to the Southern California Support Group Site.
http://www.rlshelp.org/
On this site it gives details of how to arrange a consultation with Dr B. He is in Downey, California.
His email address, don't know if it is used for his consultations is somno@verizon.net

Yep, I've got it in the arms also.

[aveerik]

Thanks Polar Bear, I would love to go to S. Cal so will check into seeing Dr. B. We have some great hospitals and medical schools in Portland Oregon and in Seattle area so will look into that.

[ViewsAskew]

Just my opinion. For relatively "normal" WED, go local if you have someone who understands it. When anything weird happens, particularly augmentation, head to Johns Hopkins (Early), Downey (Buchfuhrer), Emory (Rye), Dallas (Becker), or Mayo (Silberman). I used to have Dr B work with my local doctor. I'd see him only once a year, and hear all the time - having the best of both.