A plan: Hi all. Me again. Have decided... - Restless Legs Syn...

Restless Legs Syndrome

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A plan

Cottie profile image
33 Replies

Hi all.

Me again.

Have decided to begin withdrawing from the Neupro patch on 1 st April.

I am going to decreaae by 2 mg one day per month. (Currently I take a 4mg patch daily). I feel that will be slow enough. However, I anticipate problems so will need support from doc I suppose.

Therefore all going well I am hoping to be down to a daily dose of 2mg after 12 months. I will then gradually reduce that daily dose by 1 mg over the next 7 minths and then beginnthe process of not taking any!

My aim is to be free of that drug by April 2021! I know it is 2 years away but feel the slower the better for less withdrawal problems.

Coincidentally, the last few night I have been rls free - a minor miracle considering the previous few weeks. As still in plaster I am currently immobile so have not been doing anything different. However, as I am on aspirin whioe I am laid up, i have to take a tummy med too. For the past 3 night I have taken it just before settling down to sleep (!). It is called Omrazole Teva, a gastro resistant capsule. Just wondering if anyone knows if there is a link between the gut and RSL.

Wish me luck and I will post regular updates of my withdrawal progress.

Wishing you all restful nights.

Cottie

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33 Replies
Madlegs1 profile image
Madlegs1

An interesting method of tapering down. I will follow your course avec interest.

Something is tugging at the back of my mind about PPIs ( proton pump inhibitors) - I do know they are nasty little medicines. Don't stay on them for longer than you need to.

All the best.

Madlegs1 profile image
Madlegs1 in reply to Madlegs1

I knew it!

"Furthermore, there appears to be an association between iron deficiency and those suffering from Restless Leg Syndrome (RLS). The authors theorize that there may be a possible correlation between PPIs and the symptoms (e.g. pain) associated with RLS."

Proton Pump Inhibitors and Pain - Semantic Scholar

🤗😎

Daisy2408 profile image
Daisy2408 in reply to Madlegs1

Crikey. Am in a state of near shock. Have been taking Omeprozole for many years. The Times doc mentioned in his column to cut down if possible. My gp warned me it would give me bad gastro problems so don't try too hard. RLS bad at present. My herbal medicines no longer hitting the spot and now Omeprozole an issue. If I could see gp other than locum I would. Stuck. What to do.

Madlegs1 profile image
Madlegs1 in reply to Daisy2408

Difficult one.

No simple answer.

Choices, choices! 😎

Daisy2408 profile image
Daisy2408 in reply to Madlegs1

Oh come on madlegs you've always got a thought or two. I'm relying on your wisdom. All good wishes.

Cottie profile image
Cottie in reply to Madlegs1

Are they part of the gastro meds. I haven't got a clue about stuff like that.

Madlegs1 profile image
Madlegs1 in reply to Cottie

Me neither!! Azoles seem to be PPIs.

They stop the stomach producing acid- specially for ulcer relief.

in reply to Madlegs1

Yep you're right Omraxole is PPI, not good for RLS

Hi, you've got this well planned. Great.

Just one thing, if the patches are 4mg each, how are you going to decrease the dose by 2mg?

Cottie profile image
Cottie in reply to

Hi Manervs,

I am going to ask my doc to change my prescription from 1 x 4mg patch to 2 x 2 mg patches. Hopefully that will,help! Alternatively cut the 4 mg patch in half on the days I am reducing.

in reply to Cottie

That's what I suspected. You really need think twice about cutting patches in half. If you do this, you may destroy the release mechanism and instead of getting prolonged release, might get it all at once.

Not a good plan.

Cottie profile image
Cottie in reply to

Ok. Advice taken. Will talk to doc and get prescription for the 2mgs.

Many thanks.

in reply to Cottie

Great, be careful

LotteM profile image
LotteM in reply to

There is lots of experience from people cutting Neupro patches in halves, quarters, eights etc without any obvious problems. Not by me as I was never on Neupro/rotigotine. Hopefully others will reply??!! Cutting patches gives you far more control over your withdrawal plan. Especially towards the end. Patches exist in 1mg, 2mg, 3mg and 4mg. No half mgs.

If you get no responses may post separatrly about “cutting patches” or simply search for it.

in reply to LotteM

I've never used patches myself so have no experience of it. I'm only going off what I've read and thought it wise just to caution people who are considering. I also read it just depends what the actual release mechanism is on what effect cutting has.

Certainy, it's logical to assume that if you cut a patch in half, you get half the dose as long as the half performs normally.

If there are patches of a lower dose available, it might be safer, in any event, to use lower dose patches.

Certainly, with "slow release" capsules or tablets "popping" the capsule, cutting or crushing the tablet completely destroys the slow release mechanism.

Cutting a Neurpo patch might not be that critical. I have heard of people cutting Fentanyl patches. Why would you take the risk with that. If you survive OK, but I wonder how many deaths by opiate overdose arise from doing that.

Madlegs1 profile image
Madlegs1 in reply to

I've posted on this before, based on my experience and research. Certain patches may be cut, as long as they are designed on an area specification. In other words, the area of the patch is related to the dose. Some patches are gel based, and NOT suitable for division.

As far as Fentanyl is concerned, the Duragesic patch is ok to cut-- I was able to taper off Fentanyl by doing this. Otherwise I would have had serious difficulty in getting off the Fentanyl. I am not a Dr, but did get the unofficial heads up from a prominent Anaesthestist.

There is general experience within the rls community, that the Neupro patch is divisable, but I have no experience of particular brands ( if such is relevant)

It is extremely important, when cutting patches, to be exact in measuring, and to preserve the remainder airtight. I used clingfilm.

I hope this clarifies things. Warning-!

" This view is not medically validated" 😱

in reply to Madlegs1

Useful information, I believe that it is safer,(in respect of avoiding overdose) to cut "gel" patches, as against "matrix" patches. It's a matter of finding out which specific brands of patch are gel and which matrix.

It would be useful to get some definitive and accurate information on this, possibly from the manufacturers.

I have read some contradictory claims about some patches, e.g. one you mentioned yourself, Duragesic. I have seen claims that it is safe to cut and others that it's not. What do manufacturers say?

It seems reasonable to set up an algorithm.

The first question is

"what will cutting the patch achieve?"

If the answer to that is to reduce the dose then go on to the next question.

If the answer is anything else then exit the algorithm, do not cut.

Next question

"Does a patch already exist with the lower dose?"

if the answer is Yes, then get the lower dose patches.

If the answer is No, go to the next question

Next question

"Is it safe to cut the patch?"

if the answer is Yes, then cut it, CAREFULLY.

if the answer is No, seek medical advice.

My rationale for this is

a) I can see no reason for cutting a patch other than to reduce the dose.

b) If a lower dose patch is available using it will avoid any possible risk arising from inaccurate or inappropriate cutting.

I just wish to add a note of caution. If anyone has a valid reason for cutting a patch and has done so without ILL effect, I think you need to be careful about implying that it's OK for anyone else to cut ANY patch for ANY reason.

NAME your patch!

Problems do arise when folk misuse drugs and I imagine this happens a lot through ignorance or misinformation. Just because one of two people have done something without harm is not statistical evidence that it's therefore generally harmless.

Additionally, I don't trust the word of a doctor unless I have proof of their expertise or I have met them personally. Even then I may double check.

I don't take a doctors word second hand e.g. someone says, "My doctor says it's OK" I don't know their doctor.

This is not a criticism, just a caution and I hope, part of a healthy debate.

Madlegs1 profile image
Madlegs1 in reply to

I think it's the gel patch that will "unload" at once, rather than the matrix, which is generally area specific.

You are correct in all other aspects, and good warning.

Thanks.

in reply to Madlegs1

You may be right, I haven't been able to get a definitive answer on that.

However, It seems a matrix patch has a structure where the drug is contained in a semi-liquid form. It seems logical that if you damage the matrix, the drug will be released.

The gel one, in the other hand, the drug is part of the adhesive. Even if the adhesive is damaged the drug isn't released because it diffuses out.

some patches apparently have extra layers or reservoirs in them, which appears even more of a problem if they're damaged.

Madlegs1 profile image
Madlegs1 in reply to

Sorry- I may be getting them mixed up. One is ok to cut, the other not.

I just assumed matrix meant " spread evenly" whereas gel was in a "glob".

Apologies.

Madlegs1 profile image
Madlegs1 in reply to Madlegs1

This is from an article.

"There are two designs of transdermal patch currently available: the reservoir, or membrane-controlled system, and the matrix system. A reservoir patch holds the drug in a gel or solution and delivery is determined by a rate-controlling membrane between the drug reservoir and the skin (Fig. 3).

The matrix patch (Fig. 4) incorporates the drug into an adhesive polymer matrix, from which the drug is continuously released into the skin. The dose of drug delivered depends on the amount of drug held in the matrix and the area of the patch applied to the skin."

I'm still not clear!🙄

in reply to Madlegs1

I found this slide show, different types of patch

slideshare.net/mobile/saran...

in reply to Madlegs1

GOT IT!

See this article

pharmacist.com/danger-cutti...

UNSAFE to cut reservoir patch!!!

Can cut microreservoir patch but can't guarantee correct dose of drug

Can cut drug in adhesive patches SAFE and reduced drug dose proportionately.I

Can cut matrix patch but it may damage the adhesive.

The same article says most Fentanyl patches are reservoir and should never be cut.

And

No Fentanyl patch should be cut to reduce dose

Also see

medlineplus.gov/druginfo/me...

Madlegs1 profile image
Madlegs1 in reply to

That article is 2013. I'm pretty certain the Duragesic patches I used were new at the time I was cutting them. I know I researched it voluminously at the time. 12.5 was the smallest patch, and I needed to go down by 5mg a time. Also was using Oxynorm5 for bad nights.

The roughest 18 months of my life.

But thanks for your research.

I'm sure we've helped no-one, regarding the Neupro patch, which was the origins of this conversation! 🤓

The research I did was on some pretty hardcore user sites, where addicts were coming off horrendous Fentanyl doses. Only a few recommended cutting, but had done it successfully, and were extremely clued up on the business.

There was also the whole issue of the patches not lasting the three days- but that's another story.

Cheers.

in reply to Madlegs1

If the articles out of date, I hadn't noticed that, then they may have changed them.

as regards the Neupro I see Cottie is getting some lower dose 2 mg patches. But I don't think there are 1 mg patches, so still a risk.

Can't suggest how to deal with them not lasting 3 days. It must be a design fault or adhesive not working properly.

Madlegs1 profile image
Madlegs1 in reply to

It's too long to go through now, but all to do with half life . Good night from NZ.,😎

Mum007 profile image
Mum007

If you mean omeprazole which is an acid blocker then EVERY one of those types of drugs give me horrendous restless legs and arms day and night after being on them about 5 days. If you haven’t taken them before it may take slightly longer to affect you. BEWARE!

Cottie profile image
Cottie in reply to Mum007

Yes. Probably only a coincidence. Will know mire when prescription runs out!

in reply to Cottie

Right, Omrazol, is another name for omeprazole, a proton pump inhibitor PPI. Lowers iron levels.

I note you take aspirin. Is the Omrazol to counteract the effects of the aspirin? Omrazol is prescribed for stomach ulcers, Aspirin can cause stomach ulcers.

Stop both?

Madlegs1 profile image
Madlegs1 in reply to

With doctors' advice 😊 !

in reply to Madlegs1

Of course, you are wise

Cottie profile image
Cottie in reply to

I am immobile temporarily due to broken leg and foot., Have to wear non weight bearing boot.

Because I am a woman over 55 I am in category of clots. Doc has prescribed aspirin and omrazole for 4 weeks.

Won't be on them too much longer . 2 more weeks!

Thank you everyone for help, advice and concern.

in reply to Cottie

Hmmm I would have said mini-hep would have been more effective and less stressful to the stomach than aspirin.

Typical iatrogenic treatment. Give aspirin to prevent clots. Iatrogenic effect of aspirin = gastric ulceration or gastritis. Give Omrazol to counteract aspirin. Iatrogenic effect of Omrazol = exacerbation of RLS and so on.

Sorry to hear about your fractures, RLS and limited mobility are not friends.

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