First post, my story

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Tinabuglaw
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Joined: Sun Jun 30, 2019 5:48 pm

First post, my story

Postby Tinabuglaw » Wed Dec 25, 2019 5:06 pm

:D I've suffered from restless legs since I was a child. Early on, my RLS was very mild and intermittent. As I got older it became more precedent, but still manageable. But when I got pregnant for my first child, 12 years ago, my RLS became severe.

At that point, I would take every home remedy, melatonin, Valerian root and passion flower, natural Gabba supplements, Hyland's restful legs, all kinds of magnesium drinks and tablets and finally hot baths with tons of Epsom salts. I spent many nights finally getting to sleep in the tub and sleeping for a couple hours in the tub until it got cold, wake up, fill the tub with more got water and then finally either get up or sometimes be able to sleep in bed a little.

I had two children. Both pregnancies were horrendous. But after my second child, my RLS got worse and worse. Finally I was taking so many things and reaching for the Klonopin too often. I went to the sleep doctor.

My doctor diagnosed me during the first visit. He have me some gabapentin and sent me for an iron test. After doing some research on my own, when my iron came back at 18, instead of oral iron I asked for an infusion because I knew I wouldn't be able to stomach the oral iron.

Long story short, gabapentin didn't work, horizant didn't work and may have actually worsened my condition. The iron infusion didn't work, Lyrica made me feel drunk all the time, ropinerol made me puke and mirapex made me compulsive. So here I am on Methadone. 5mg worked perfectly for 6 months. No side effects, no high, no RLS!

Then, RLS started coming back. My doctor said I was on half the dose most of his patients were on so he authorized me to take 7.5 to 10mg. I'm currently on 10mg. I am really scared that I'm going to keep going up on my side, even though studies allegedly show that people treated with opioids for RLS generally don't build a tolerance.

If anyone is familiar with this, I'd be grateful to hear about your experience with opioids and tolerance or dose adjustments.

ViewsAskew
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Re: First post, my story

Postby ViewsAskew » Wed Dec 25, 2019 9:55 pm

Hi Tinabuglaw.

Some people can alternate between types of opioids - it prevents withdrawal, but can keep tolerance at bay. Some people alternate dose (which I do - but I had to have something else to cover. Here is my abbreviated story.

I was not a happy person when I found I had tolerance, because as you noted, the literature says that many people do not have that problem. We have some members here on the same dose for 10 years or longer.

I had terribly augmentation from pramipexole about 15 years ago - only took about a week to augment (and with a ferritin level of 8, it makes sense - just didn't know that in 2003). 10 mg of methadone worked a charm in 2005 to help me get off the pramipexole. A few months later, it wasn't enough. My doc said that it I likely just wasn't on enough to start (in retrospect, that makes no sense, but at the time...). So, up to 12.5, as I didn't want to increase it. Then, about 9 months later, up to 15.

Every 8-9 months, like clockwork, I needed more. Each time I would initially just say, too bad, so sad, and keep the dose as it was. Sometimes I would keep it there for up to another year, each night doing leg twirls in bed, doing warm baths, etc. Eventually when I'd had enough, I'd increase it by 2.5 mg. When 20 wasn't enough, I pretty much said - something's got to give.

We tried other opioids. Almost all of them. Didn't help - either the dose was MUCH too high or I didn't have enough coverage, since at the time, my RLS was about 18-20 hours a day. I hadn't had an infusion, yet.

I have, in the last ten years, had a complicated dance of taking methadone and pramipexole to keep the dose of both low, stopping the pramipexole regularly, and changing the methadone dose at least weekly. I also had 3 infusions, as I find my ferritin needs to be in the 300s to get any reduction in symptoms. It helps by about 50% - better than nothing!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Tinabuglaw
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Joined: Sun Jun 30, 2019 5:48 pm

Re: First post, my story

Postby Tinabuglaw » Thu Dec 26, 2019 4:43 am

Wow! I hope I'm not one of those that do build a tolerance as I fear. Maybe I'll talk to my doctor to keep doing infusions to get my iron up higher.

So what happens on days you don't take a DA or methadone? Do you have withdrawals?

ViewsAskew
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Re: First post, my story

Postby ViewsAskew » Thu Dec 26, 2019 7:27 am

When I did it originally - back in 2009-2012 - I would go two days on methadone, two days on pramipexole. I was always in a mini withdrawal. Because the half life is so long, it never was bad, but it was a low grade headache, not feeling well, etc.

Now, I just reduce the methadone and it is only the pramipexole I stop. Works much better.

I don't know how high your ferritin was, but the first infusion only helped me for about a week (like a 50% reduction). Over the next 3 weeks, I slowly had to increase until I was back at the full dose of meds after a month. Because my GP did the wrong bloodwork, I didn't know my ferritin level at the time it helped, only after it was already decreasing it's helpfulness - it was 270. So, I knew it had to be higher than that.

Iron doesn't help everyone...but some of us do need high levels, so it could be that you simply didn't get it high enough for long enough. My first infusion was dumped from my body quite fast.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Re: First post, my story

Postby stjohnh » Thu Dec 26, 2019 6:55 pm

Tinabuglaw wrote::D I've suffered from restless legs since I was a child...

My doctor diagnosed me during the first visit. He have me some gabapentin and sent me for an iron test. After doing some research on my own, when my iron came back at 18, instead of oral iron I asked for an infusion because I knew I wouldn't be able to stomach the oral iron.

Long story short, gabapentin didn't work, horizant didn't work and may have actually worsened my condition. The iron infusion didn't work, ...


Your situation is difficult, and I am not very knowledgeable about opioid options. However, it seems that you don't have a lot of options. The International Restless Legs Syndrome Study Group consensus paper makes it clear that there is only one type (of the many types) of IV Iron that has good evidence for improvement, Injectafer. The likelihood that the IV iron that you received was Injectafer is low, and even if you got it, you probably didn't get the currently recommended optimal dosing.

In your situation, especially because your options are limited, I think I would recommend re-visiting the IV Iron, with the goal of being sure you get the currently recommended preparation (Injectafer) at the recommended doses (2 infusions, one week apart).

Here is a link to the consensus recommendations of the international experts:
https://www.sciencedirect.com/science/a ... via%3Dihub

I think you should print a copy and give it to your doctor, don't email, physically give the doctor a copy when you go to your next visit.
Blessings,
Holland

Tinabuglaw
Posts: 7
Joined: Sun Jun 30, 2019 5:48 pm

Re: First post, my story

Postby Tinabuglaw » Thu Dec 26, 2019 7:30 pm

Ok. So I'll print it and email a copy to my doctor. I can't understand which is best. Lol. He's supposed to be an international expert. Dr. Brian Koo at Yale as well as the veteran's hospital in West Haven CT.

He does test all 4 levels. My ferritin went up to 95. Then back down to 65. I just got another IV last week. It's feraheme. Takes 15 minutes. But 6 weeks to see a difference. So that's when I get blood drawn again. He only does one at a time. I'll ask why not two.

stjohnh
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Re: First post, my story

Postby stjohnh » Thu Dec 26, 2019 9:01 pm

Don't email it. Likely the Doc won't see it, and even if he does he likely will not give it the attention it will get if you give it to him in person. If you email first, he may just say "I've already seen it" when you go for your in-person visit. Your doc get GOBS of email and likely pays little attention to most of it.


Here is a quote from the consensus experts on ferumoxytol which is the chemical name of the brand name Feraheme.

Section 5.8.1
"There is inadequate evidence to make any conclusions on the efficacy or safety of ferumoxytol and isomaltoside for the treatment of RLS (Level U).

There are no studies available that assess the efficacy of either ferumoxytol or isomaltoside for treatment of RLS."

I would ask your doc to prescribe Injectafer at the doses recommended in the guidelines (Injectafer 750mg for first dose, then 750mg again, 5-7 days later).

It might help to use a highlighter and highlight the last column of Table 1 on page 31 of the article. Also the first paragraph of section 5.3.1 on page 33. Be sure to leave the paper with the doc so he can review it later if he wishes.

The main problem is that there is no test for brain iron, so checking the ferritin after an IV infusion of iron doesn't tell us anything about the brain iron, only the blood iron (which is not the same). RLS is generally caused by low brain iron.
Last edited by stjohnh on Thu Dec 26, 2019 9:30 pm, edited 1 time in total.
Blessings,
Holland

QyX
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Re: First post, my story

Postby QyX » Thu Dec 26, 2019 9:24 pm

Regarding opioid tolerance: I think it is fair to say we RLS patients generally have less opioid tolerance issues than your average chronic pain patient has. Still, tolerance issues can still happen, however tolerance seems much easier to manage than it is with classic chronic pain when you have a doctor who is willing to prescribe the necessary drugs.

Here is what I do to combat opioid tolerance: initially every opioid I tried worked fine for me. But then I noticed that I had to increase my dose to get the same relief. This reached a point where even increasing the dose did not help anymore. I then started to switch opioids. Oxycodone turned out to be the most effective opioid while Hydromorphone became the less effective. Morphine seems to be in the middle. However since I can get severe dry eyes from Oxycodone, I try to limit my dose to 20 mg daily.

What I do now is take Hydromorphone in the morning, where I have the mildest symptoms of the day. Morphine in the afternoon and evening and Oxycodone at night, for the most severe symptoms. To be fair, combining 3 different opioids in that way is unusual but since my overall average opioid dose is stable over +3 years now, my doctor is okay with this approach since therapy with only one opioid did not work anymore.

Additionally it can be helpful to take medication to boost the opioids a bit. I've been taking Carbamazepine for roughly 4 years since I did not tolerate the more common used antiepileptics Gabapentin and Lyrica. Initially Carbamazepine was so potent that I did not had to take any opioids at all for several months.

But after 4 years Carbamazepine stopped working and it even made my symptoms worse. I then switched to Oxcarbazepine, a drug very similar to Carbamazepine. While Oxcarbazepine was working for me, it unfortunately was not working well enough, even in high doses. At that point my average opioid dose was close to 300 mg ... way too high ....

So ultimately my doctor was forced to try something else and so she send me to a medical Marijuana specialist. I wrote about this in great detail in the prescription drugs forum subsection but in short it turned out that Cannabis is absolutely amazing for my RLS and it helped me to gradually reduce my opioid dose back down to roughly 160 mg Morphine equivalent again.

Right now I couldn't be happier. From what I've heard doctors in the U.S. are reluctant to use Carbamazepine / Oxcarbazepine for RLS even though those drugs can be just as effective as Gabapentin, Horizon and Lyrica.

10 mg Methadone is still a pretty low dose. It would be smart to make plans in case you develop tolerance issues and discuss this topic with your doctor before this issues become relevant, however personally I wouldn't worry about it too much until you need 20 mg of Methadone or more. And keep in mind that dose adjustments in the first few weeks and months of a new treatment are quite common. So just because you are taking a bit more than you started with doesn't mean much. There is always some adjustment and getting used to period with new drugs.

The most important takeaway is that opioid tolerance issues are manageable. I am a really bad case but lately even I started doing quite well once I figured out how I have to use medical Marijuana.

Oh, and while I don't know if this is really true: there are some theories that Methadone is less prone to tolerance than the classic morphine-like opioids (Codeine, Dihydrocodeine, Morphine, Hydrocodone, Oxycodone, Hydromorphone, Oxymorphone, ...) or Fentanyl since Methadone has an additional mechanism of action. The experience of Ann seems to contradict this but overall we don't have any good evidence to really know.

Just in general: the more you rely on opioids alone, the more likely you will run into tolerance issues at some point in time, in my opinion. Having said that: there are still people who can do quite well on opioid monotherapy alone.

In the end everyone is different and I guess you just have to wait and see how things turn out.

stjohnh
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Re: First post, my story

Postby stjohnh » Thu Dec 26, 2019 9:31 pm

.
Blessings,
Holland

Tinabuglaw
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Re: First post, my story

Postby Tinabuglaw » Thu Dec 26, 2019 11:10 pm

I think a spinal tap measures brain iron. He had asked me to do one prior to being medicated-which I declined.

He answers my emails within hours every time. Sometimes he will call me.

I'll highlight for him and copy and paste your response. I'll ask him why he did not use injectifer and if he could try to do it this way. How long do those take?

In the article it said that feraheme was slow and therefore more effective. Did I read it wrong? I'm sorry to keep asking questions. I just want to make sure I'm well informed and ask/say the rush things.

stjohnh
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Re: First post, my story

Postby stjohnh » Thu Dec 26, 2019 11:59 pm

Tinabuglaw wrote:I think a spinal tap measures brain iron. He had asked me to do one prior to being medicated-which I declined.


Spinal tap can measure CSF (Cerebro Spinal Fluid) iron levels, which are not well correlated to BID (Brain Iron Deficiency). Not only that, there is evidence that the BID of RLS is a regional deficiency, rather than iron deficiency of the whole brain. This is mentioned in the guidelines article on page 30, next to the last sentence of the first column.
...

Tinabuglaw wrote: I'll ask him why he did not use injectifer and if he could try to do it this way. How long do those take?


I think you are mistaking your doctor's 6-week ferritin check with how long it takes IV Iron to have an effect. The improvement with IV iron for most people starts a few weeks after the infusion and there is usually steady improvement for a month or so after initial improvement. However, results are highly variable and some people have no improvement at all, for reasons currently unknown.

Tinabuglaw wrote: In the article it said that feraheme was slow and therefore more effective. Did I read it wrong? I'm sorry to keep asking questions. I just want to make sure I'm well informed and ask/say the rush things.


Well, I think you are extrapolating what the article actually says. I think you are referring to the sentence on page 30, first paragraph of column 1 which says:
"Conversely, compounds that release iron more slowly over many hours (low molecular weight iron dextran,ferric carboxymaltose, ferumoxytol, and iron isomaltoside) allow more iron to be taken up by transferrin, and produce less labile iron(Fig. 2). The slow-release compounds also show greater increases in macrophage iron concentrations compared to the fast-release compounds."

There is more discussion of slow release vs fast release in section 5.4.4, but careful reading of 5.4.4 will make it clear that this a theoretical discussion rather than established clincal fact.

The main significance is that this is that it allows more iron to be given at a single injection than with fast release IV iron, which to get the same total dose requires multiple IV injections several days apart. I don't believe there is any statement in the article that slow release is more effective in reducing RLS symptoms. To be clear, the goal is reduction of RLS symptoms, NOT increasing ferritin. I'm sure that the Feraheme increases blood ferritin. It is currently unknown if it reduces RLS symptoms.

The Feraheme your doctor has given you is a slow release form, which allows for a lot of iron to be given in a single dose, and theoretically, should work fairly well. The problem is, there isn't any study evidence that it ACTUALLY does make RLS better. Medical science is filled with innumerable theoretically good ideas that don't pan out in practice. It is POSSIBLE that Feraheme will someday prove to be a very good treatment for RLS. We just don't know. Injectafer has proven to improve RLS symptoms in multiple studies. It isn't just theoretical, like Feraheme use is.

Unfortunately, there are a lot of questions about the causes of RLS, treatment options, and diagnosis that are simply unknown.
Blessings,
Holland

ViewsAskew
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Re: First post, my story

Postby ViewsAskew » Fri Dec 27, 2019 1:17 am

I seem to recall that there aren't a lot of studies on it - so the recommendations for Injectifer, as I understand it, may be because it has the MOST evidence rather than that the others do not work.

My insurance didn't cover it this time (injectifer), though I had it last time. I noticed no difference in how it worked, thankfully.

Per the tolerance, there is a study from 10 or so years ago that there IS a difference in tolerance with RLS patients regarding methadone. But the difference is only (again, if I remember correctly) between RLS vs non-RLS treatment, not of opioids. Or, maybe better put, it was that in following patients with RLS who used methadone, there was a very very small risk of tolerance compared to people without RLS who used methadone (or possibly opioids, again, long time ago). It was by Becker, out of Texas, I think. But could have been the other doc in Texas, as I get them confused.

Koo as well-respected by the RLS Foundation. I would trust him absolutely.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Tinabuglaw
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Joined: Sun Jun 30, 2019 5:48 pm

Re: First post, my story

Postby Tinabuglaw » Fri Dec 27, 2019 3:54 am

So this time the doctor gave you feraheme and you notice no difference in the quality of symptom reduction between the two intravenous drugs?

Yes I love Doctor who he's always available and he seems very knowledgeable. He truly cares about his patients. The quote was toward the end of the discussion where it said that you have to remember that when treating RLS, you're not treating pain, so the drug works differently in the brain and therefore tolerance is insanely much of an issue.

ViewsAskew
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Re: First post, my story

Postby ViewsAskew » Fri Dec 27, 2019 9:31 am

Almost - this time I had LMW iron dextran and last time was the preferred kind - and both worked the same. I wrote about it in a post here in October or September. Will update it.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Tinabuglaw
Posts: 7
Joined: Sun Jun 30, 2019 5:48 pm

Re: First post, my story

Postby Tinabuglaw » Fri Dec 27, 2019 7:16 pm

Perfect ty!


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