I’ve had my drug review: I was on... - Restless Legs Syn...

Restless Legs Syndrome

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I’ve had my drug review

MumofBella profile image
12 Replies

I was on Tramadol, Neupro and pregabalin for nightly RLS and lots of pain.

I had steroid injections on 9 January 2023 including into my sacroiliac joint - a week after this I began to get awful pain and was unable to walk without support from then until now.

Despite being a patient of a pain clinic nothing was actually done for me and several appeals for a drug review were ignored.

Then yesterday I saw the best GP I’ve had since I was a child back in the 1950s.

He had prepared well and had suggestions ready, I’m to stop Neupro and instead take Duloxetine and Zopiclone (only when needed).

I’ll certainly give it a bash while I wait for injections into my sacroiliac joint and hope that I get some peace soon.

Are these drugs in combination good?

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MumofBella profile image
MumofBella
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12 Replies
Joolsg profile image
Joolsg

What!@!And how does this GP propose to get you off Neupro safely?

Has he looked at the safe withdrawal schedule on RLS-UK website under Useful resources?

Has he taken full iron panel blood tests?

And DO NOT start Duloxetine!

It will send your RLS through the roof and is specifically listed as a medication to AVOID for RLS.

Show this GP the latest update from NICE.

He needs to go back to school!

He hasn't prepared well at all. He may have sounded sympathetic but he has given you the worst advice.

You need to start pregabalin or a low dose opioid. Not a triggering anti depressant.

cks.nice.org.uk/topics/rest...

ziggypiggy profile image
ziggypiggy in reply toJoolsg

I wouldn't be so quick to at least not giving duloxetine a try. It is very effective for nerve pain. I also find it personally the least disruptive of all the SSRI/SNRI i I have used. If the duloxetine ends up being bad for a persons RLS they will know within days of starting this if this will be a proplem or not. Should it help with the pain then it is up to the individual whether the benefit of taking it outweighs the side effects.

I suffer with severe burning feet. The Oxycontin and gabapentin I take provide no relief at all. The only medications that provide relief have been antidepressants like duloxetine. It is extremely effective for my burning feet. The burning hot feet are just as disruptive to my sleep as my severe RLS. Luckily I'm able to mangage both with the Oxycontin and duloxetine. If Ihypothetically I ever had to choise between just one or the other it would be a toss up.

Anyways, the point being, everyones complex medical conditions are unique and how they respond to certain meds are unique as well. There is really no harm in trying the duloxetine. It will either work or it won't to some degree. At that point a decision can be made with your doctor whether it's worth it or not to continue.

The ultimate goal is always improvement to ones quality of life through treatment. There are many ways to get there.

Joolsg profile image
Joolsg in reply toziggypiggy

I understand that it is trial & error. But this GP seems to be prescribing duloxetine for RLS . And that is contrary to all expert evidence, including Mayo & NICE.

ziggypiggy profile image
ziggypiggy in reply toJoolsg

I thought the duloxetine was for the pain. Yes, if for RLS not a good suggestion.

MumofBella profile image
MumofBella in reply toziggypiggy

Yes, it was prescribed for fibromyalgia pain.

Joolsg profile image
Joolsg in reply toziggypiggy

I can see that now. The pain would be better treated with pregabalin/gabapentin or medical cannabis. All very good for nerve pain.

MumofBella profile image
MumofBella in reply toJoolsg

I feel maybe I misled everyone? Anyway, he’s prescribed it for pain, for my fibromyalgia.

Joolsg profile image
Joolsg in reply toMumofBella

Understand. But it does worsen RLS for nearly everyone.Better options for fibromyalgia pain are pregabalin/gabapentin which also help RLS or medical cannabis.

SueJohnson profile image
SueJohnson in reply toMumofBella

Then what did he suggest for your RLS?

ziggypiggy profile image
ziggypiggy in reply toMumofBella

Duloxetine has more side effects than gabapentin. Usually they precribe gabapentin first for this reason. Duloxetine may have been prescribed because its very effective for fibromyalgia pain and also for fatigue associated with it. If you already have the Rx filled for duloxetine you might as well give it a go and see how you tolerate it and see if helps then ask about gabapentin if not.

ziggypiggy profile image
ziggypiggy in reply toziggypiggy

Also, I forgot you will need something for your RLS. So maybe you should get gaba first. Hold on the duloxetine script if needed.

SueJohnson profile image
SueJohnson

Do not just stop neupro. You will suffer tremendously! I gave you this information before but will repeat it since you have probably forgotten it.

You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. Easiest way is to draw lines on it. This will equal the .25 mg reduction since 1 mg of Neupro = 1.5 mg ropinirole,. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you were taking a 3 mg one this would be 4.5 mg of ropinirole. Since you can get ropinirole in .25 tablets this is the easier way to reduce. Do not get the slow release nor extended release ones. Then reduce by 25 mg every 2 weeks. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one.

Duloxetine will as Joolsg said will definitely make your RLS worse. My RLS is controlled by gabapentin and I can take other trigger medicines without any effect but when I took Duloxetine my RLS went through the roof.

If you are taking it for pain you need a low dose opioid opioid. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often. Since you will be taking it for pain, you should be able to get it. You will need to either see another pain clinic or a neurologist and specifically say you need it for pain.

If you are taking it for depression ask for wellbutrin or trazodone.

You said previously you tried gabapentin and you are now on pregabalin. If you are on either while on the Neupro patch they won't work.

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