Fentanyl patches for RLS

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QyX

Fentanyl patches for RLS

Post by QyX »

I wonder if anyone here ever tried fentanyl patches for RLS. I've been taking an average of 200 mg Morphine per day for almost 8 years now. My cannabis doc advised me it would be an option but he is not the one treating my RLS. However I don't my think my neurologist who has been treating my RLS for the past 6 years will have any issues with it.

The big advantage of fentanyl would be, that one patch can last up to 72 hours.

At the moment I take 15 mg oxycodone plus 20 mg morphine 3 times per day plus an additional low 4rd dose to adjust for my messed up sleep pattern. So if fentanyl would offer the same kind of relief I get from the combination of morphine and oxycodone, it would make things much easier for me.

With all the other pills I take and stuff like magnesium, vitamins, zink, iron I am happy to get rid of as much tablets as possible.

However I also wonder about tolerance. It has been an issue in the past with hydromorphone and no matter how much oxycodone or morphine I take, neither of them alone can fully manage alone for whatever reason. So it is not at all clear that fentanyl will work for me but I guess the possible reward is worth a shot.

badnights
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Re: Fentanyl patches for RLS

Post by badnights »

Worth a try maybe, but on the other hand, what a pain if you ever switch doctors or travel and have to explain your fentanyl use. What did you decide? I tend to think, why change what's been sort-of working? It took a long time for you to find some kind of balance. Or am I getting super-cautious in my old age?
Beth - Wishing you a restful sleep tonight
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Yankiwi
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Re: Fentanyl patches for RLS

Post by Yankiwi »

I can't imagine a doctor prescribing fentanyl for RLS. My husband had a patch during his last very painful days with cancer. The dangers of mishandling fentanyl are serious, even touching the patch except around the edges.

badnights
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Re: Fentanyl patches for RLS

Post by badnights »

QyX has an unusual doctor.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

QyX

Re: Fentanyl patches for RLS

Post by QyX »

I was able to pick up the prescription today and can pick it up in the evening. So I will be able to report in the next days how it is going and if it is an improvement or not.

Fentanyl is quite commonly prescribed from certain groups of doctors in Germany, including GPs. However it is certainly true that fentanyl patches have the highest potential for abuse from all the commonly prescribed opioids for home use.

Fentanyl is available in patches at a release rate of 12, 25, 50, 75 and 100 µg/h. (in Germany, might vary for other countries!)

12 µg/h would equal ≤ 44 mg Morphine/24
25 µg/h 45 - 89 and so on

The neurologist I've seen in the past all thought it would be a nice idea to try fentanyl patches because they work 72 but none of them had the experience and I had no reason to push it. But because of my Cannabis situation, I ended up at a classic pain doctor who treats lots of cancer pain patience.

For him it doesn't matter if I take 180 mg Morphine as a mixture of Oxycodone and Morphine or a 75 µg/h Fentanyl patch. He seems quite pleased that I was willing to go for his idea. Today he said he didn't believe he could convince me so fast.

I did search for case report but there are none. So it will be interesting to see. I heard about patients who are on 200 mg Methadone for RLS and others who receive intrathecal Morphine via an implanted pump. So RLS can get really bad and require significant doses of potent opioids.

My RLS also wouldn't be stable without additional marijuana, Oxcarbazepine and Tryptophan. The opioids play a key role but so do all the other drugs, too.

Stainless
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Re: Fentanyl patches for RLS

Post by Stainless »

Wow! My doctors in Florida are practicing medicine with their hands tied behind their back.

QyX

Re: Fentanyl patches for RLS

Post by QyX »

It's the 2nd day with 2nd patch, so in total 5 days on Fentanyl now. Is it any better than my previous regime?

Quick answer: it is starting to look that way.

My previous regime was Oxycodon 40 + 20 mg as 24h XR version and Morphine 30 mg standard XR every 12 hours. Before that I was using standard Oxycodone XR. So when I switched to the 24h tablet, I already noticed what an improvement it is when you need 24/7 coverage and don't have those opioid plasma levels going up and down every 7-8 hours.

However since 2014 / 2015 I was having issues with opioid monotherapy. No matter how high the dose of a standard oral opioid (Morphine, Oxycodone, Hydromorphone), it never was enough. It turned out the best solution was a combination of Oxycodone and Morphine.

Both Oxycodone and Morphine were much better at treating my RLS than Hydromorphone. Hydromorphone just stopped working after about 2 years, it was still good for the movement but didn't offer much pain relief anymore. So I knew that the potency of an opioid does not necessarily has anything to do with its effectiveness for RLS.

Now it seems that as of this morning, Fentanyl offers the same quality of relief as my Morphine / Oxycodone combination, just without the plasma highs and lows.

It also took about 12 hours until the patch had some acceptable initial pain relief, so I had to use about 90 mg of oral Morphine in the first hours to not get crazy RLS.

Considering that I also have this rare circadian disorder called Non-24 which means my natural sleep cycle is not 24 hours but more like 25 to 34 hours, depending on the circumstances, an opioid patch that works for 3 days can make things a lot easier since it can be really hard to predict when I will be able to sleep the next time and for how long.

QyX

Re: Fentanyl patches for RLS

Post by QyX »

Update after 2 weeks: it is certainly much better than I ever would have expected based on my previous experience with Morphine, Oxycodone and Hydromorophone. The efficacy against my RLS symptoms is higher than any other drug I've personally experienced. Maybe this will not last because I experienced changes in efficacy with other opioids before but for now the symptom control is amazing.

My bowel and bladder functions have normalized and the nasal mucosa is not swollen anymore.

I have to see how my sleep pattern will develop. The last few days I had hypersomnia, which is highly unusual for me. Especially stopping Oxycodone partially feels like coming off from a stimulant. I would not be surprised if part of my difficulties with sleep had been caused by Oxycodone. Always preferred Morphine over it but Morphine alone didn't work well enough for me anymore which is why I had this weird combination.

Polar Bear
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Re: Fentanyl patches for RLS

Post by Polar Bear »

I am delighted to hear that this new regime is working for you ad hope it continues to do so.
Wonderful to hear that your 'symptom control is amazing'.
Betty
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stjohnh
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Re: Fentanyl patches for RLS

Post by stjohnh »

I wonder if fentanyl is actually better for RLS patients genereally than other opioids. I suspect it has been used only very rarely for RLS, so not much experience.
Blessings,
Holland

QyX

Re: Fentanyl patches for RLS

Post by QyX »

stjohnh wrote:
Wed Jul 28, 2021 1:50 am
I wonder if fentanyl is actually better for RLS patients genereally than other opioids. I suspect it has been used only very rarely for RLS, so not much experience.
It is certainly a very interesting drug for a subset of RLS patients (those who require constant opioid coverage at doses of 50 mg Morphine or higher and have 24/7 symptoms). Maybe fentanyl even has some unique properties; I found this interesting paper when researching fentanyl in the context of RLS:

Immediate resolution of acute, choreatic hyperkinesias following intravenous fentanyl:

https://www.njcponline.com/temp/NigerJC ... 192918.pdf (free)

There is also this case report, where RLS symptoms were controlled under fentanyl though the cancer pain was not:

Improvement of Restless Legs Syndrome Under Treatment of Cancer Pain With Morphine and Fentanyl

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6517474/ (free)

Can also recommend this article about the pharmacology of fentanyl:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7233332/

The hyperkineasis (restless body syndrome in the context of this case) described in the 1st paper is very similar to what I've suffered after withdrawing from antipsychotics. I wish at the time I would have known that such symptoms could be treated with opioids.

In regards to the efficacy in treating RLS symptoms: fentayl most likely would not have any advantages in that area for most of the RLS patients who depend on opioids but for those on higher doses and with problematic side effects, especially when morphine like opioids have failed and methadone is not tolerated, then fentanyl would be the perfect alternative in my opinion.

When you also consider side effects from oral opioids, then fentanyl certainly looks like the superior substance. If I had known how much less systemic side effects I would have under fentanyl, I would have made the switch years ago. It just never seemed worth trying.

QyX

Re: Fentanyl patches for RLS

Post by QyX »

Polar Bear wrote:
Wed Jul 28, 2021 1:17 am
I am delighted to hear that this new regime is working for you ad hope it continues to do so.
Wonderful to hear that your 'symptom control is amazing'.
Thank you! RLS symptom control is still really good. So for now I am optimistic it will stay that way.

QyX

Re: Fentanyl patches for RLS

Post by QyX »

So how is it going? Feels like I need to replace the patch every 2 to 2 1/2 days now and need small doses of 5-7,5 mg of Oxycodone for certain situations. So that tolerance I expected because I know from Hydromorphone that higher potency not always means better effect.

My doctor wanted me to use Morphine but somehow only Fenta + Oxy can relieve my RLS in my calves, Morphine can not. Next appointment with him is September 10th.

It is still much better than everything else I had before and the much reduced side effects are great. The residue from the glue on the patch stays partly on the skin. Removing that can be a bit of a pain but otherwise Fentanyl is a great baseline opioid if you need a certain dose and have access to it.

I guess we will see how I think about it in 6 months. For now I much prefer it over the other solutions, also improved libido / sex drive, which came unexpected.

I wish it would be an option for more patients since quite a few severe RLS cases need 24 / 7 opioid coverage, esp. when you are long-term patient and are on opioids for years.

gchamp
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Re: Fentanyl patches for RLS

Post by gchamp »

Is using the fentanyl due to none of the other meds working? I’ve been on several different meds for my RLS, but fentanyl has never been discussed.

badnights
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Re: Fentanyl patches for RLS

Post by badnights »

"QyX" wrote:The last few days I had hypersomnia, which is highly unusual for me. Especially stopping Oxycodone partially feels like coming off from a stimulant. I would not be surprised if part of my difficulties with sleep had been caused by Oxycodone.
Are you still super sleepy? It seems possible that, without the alerting effect of the oxycodone, your body was simply trying to make up for lost sleep. But if you're still hypersomnolent, maybe that's a side effect of the fentanyl.
gchamp wrote:I’ve been on several different meds for my RLS, but fentanyl has never been discussed.
I doubt if it ever will be discussed at a WED/RLS appointment in the U.S. or Canada, at least not in the forseeable future.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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