Patches: I would like to ask if anyone with RA has been... - NRAS

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Patches

Zephre profile image
38 Replies

I would like to ask if anyone with RA has been prescribed pain patches from gp as I'm in bit of a flare at the mo ,I phoned my gp and he has prescribed me patches ,im curious if they are good or bad side effects Thank you !!!!!!!

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Zephre profile image
Zephre
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38 Replies

Hi Zephre,

My personal experience with pain patches were dissapointing. I didn't have any side effects but they didn't do much for my pains. I find the only thing that works for me is tramadol, but I know they don't suit a lot if people. Trial and error to see what suits you. Stay well 🤗X

Zephre profile image
Zephre in reply to

Hi Angel mad thanks for replying ,I have been given tramadol but too strong for me bit spaced out i felt but will try patches see how i go ,stay safe 😕

in reply to Zephre

Its all about finding what works for you, nothing to loose by trying the patches. Good luck I hope they help 🤗X

bubblyalex profile image
bubblyalex

Never had those. What meds are in them?

Zephre profile image
Zephre in reply to bubblyalex

Hi it said there is Fentanyl in them strong for pain!!!

bubblyalex profile image
bubblyalex in reply to Zephre

Oh right. I dodge opioids after a very bad experience on them last year. I hope they help 🙂

Zephre profile image
Zephre

Thank you i hadn't tried them yet but think I must as I can't take tramadol too strong for me !!!

Zephre profile image
Zephre

Thanks fingers x eh !!!!

medway-lady profile image
medway-lady

I hav'nt but my mum had severe Osteoporosis and she had them. She could walk and sleep again despite 4 spinal fractures and all sorts of other bone damage. She never said anything about problems but could not have Butrans I think it was as allergic to the adhesive. GP sorted it all out and they were changed weekly. I had Pregabalin for Shingles pain that worked well. i knew addictive but did'nt care and tapered off fine.

Gnarli profile image
Gnarli

I was given 5mg BuTrans patches (buprenorphine) when I wasn't coping with the tablets so well. They gave me gastric upsets. I found the patches worked very well for me but I was a little more sleepy and woozy than normal until I got used to them. Titrated up to 10mg and it was brilliant. No pain, no woozy feeling. I felt normal for over three months. Unfortunately, my skin is sensitive to adhesive and started with an itchy, burning, blistering rash so I had to stop them. I reckon it's worth trying

medway-lady profile image
medway-lady in reply to Gnarli

Thats what happened to my mum and they were changed to another brand which was fine until she passed away at a great age. I can't remember what they were called but the GP said it was the glue and so might be worth asking about another brand.

Gnarli profile image
Gnarli in reply to medway-lady

That's so kind of you to respond and I'm glad the second brand of patches helped your poor Mum. Now, don't tell anyone and fingers crossed, I am nearly pain free at the moment so a couple of tablets at bedtime are all I need. *whisper* hooray! I will investigate patches if/ when they're needed as it would help with the tummy upsets

medway-lady profile image
medway-lady in reply to Gnarli

I know that my old mum spent 4 hours locked up on the loo whilst we waited for an ambulance to give pain relief so she could be moved. It was horrific the level of pain from the spinal fractures. She had tablets to prevent the Osteoporosis but they did'n stop its progression. I believe Osteoporosis to be an evil disease. And I'm keeping my fingers crossed you're out of pain too. xx

Gnarli profile image
Gnarli in reply to medway-lady

That poor lady. Thankfully, I'm doing ok just a few aches when I overdo things. You're right though, osteoporosis is an awful disease

Gnarli profile image
Gnarli in reply to Gnarli

Oooh. Where are my manners? I have my fingers crossed that you are not suffering at the moment too 🤞

Neonkittie17 profile image
Neonkittie17 in reply to Gnarli

Some of them have soya in the adhesive (I’m very allergic to soya) and last year a temporary pharmacist tried to palm off two different brands of Fentanyl in one prescription onto me which both had soya in as I recalled the brand names and looked up on my iPhone whilst I was there. She was furious and refused to take them back and change for Durogesic. She made me go in again the next day to my doc who was very unhappy about it and apparently told her off as the pharmacy adjoins the surgery! It is allowed to ask for the brand you want as someone did it for me recently when I said I only wanted the usual Durogesic Fentanyl patches. However o can’t get the GP’s scripts/admin woman to put Durogesic on it instead of just Fentanyl.

Gnarli profile image
Gnarli in reply to Neonkittie17

Blooming sauce! You'd expect a professional service from a pharmacist wouldn't you? I'm sure your doctor had better things to do than chide a chippy stand-in. It's a good thing you knew what's what. I don't have a problem with soya, luckily. Just a skin that hates any agravation, abrasion or perfumed stuff

Zephre profile image
Zephre in reply to Neonkittie17

Jeez oh surely that's not right I don't know much about these patches but I will find d out cheers!!

rounder profile image
rounder

I have butrans patches, no side effects and good pain relief. I add in two cocodamol at bedtime, works for me. Hope they help you too.

Zephre profile image
Zephre

Thanks to everyone who replied to my query I'm still undecided as yet may s speak to my rheumo nurse if I can as I have other health problems xx

nomoreheels profile image
nomoreheels

Hiya Zephre. I started on BuTrans transdermal patches (buprenorphine) 6 years ago, 5mcg/hr, titrated up by 5mcg/hr at each monthly review until I reached 20mcg/hr. I started having issues with the adhesive so they were changed to another brand, Butec which I was fine with. Then with the prescribing costs cut I was prescribed an alternative brand, Transtec, to which I responded as I did with BuTrans, so Butec was prescribed again.

I find them helpful, but as with any med you'd only know by trying yourself. They can make you a little woozy initially, they're no different to any other opioid med from that point of view, so they can take some persevering with. If you can though as I have found they can be a good alternative way of receiving 24 hr pain relief. I change mine every Saturday. They have to be placed on a different area in a 4 week cycle so the top on my right arm, then the next week the left, then on my back, right hand side below my shoulder, left side the following week then back to my right arm again etc. Heat can release a boost of the med, though it doesn’t seem to be an issue as far as I'm aware.

Zephre profile image
Zephre

Thanks for this mine are Matrifen 12 micro and change every 3rd day but what works for one don't work for another in some cases but I will look into them a bit more as I have other health problems !!!!

Otto11 profile image
Otto11

I was prescribed Butrens patches a few years ago during a bad flare till they could arrange ultrasounds but I managed about an hour! Seriously I’m a lightweight! I felt so spaced out I honestly had to take it off.

I can’t take Tramadol either

Hope they help you x

Angjoplin profile image
Angjoplin

I wouldn't be without my fentanyl patches. They enable me to sleep and work. I got to the point I was constantly on the verge of tears with the pain. They have made me able to live again.

They made me sick and sleepy for the first couple of days but after that I've been fine.

I cant tolerate tramadol it gave me heart palpitations and made me dizzy.

Leics profile image
Leics

Hi I have been prescribed matrifen too. I have been using them off and on for about 3 years I don’t find they’re addictive so no cold turkey if I don’t use them. I’m on lowest dose 12 mg I have had 20mg before. To start with I did think that it lowered my BP until I got used to them. The best bit is that they don’t involve the stomach so no issues there it takes the edge of the pain but I’m still able to function unlike the experience with tramadol which just laid me out. Hopefully they’ll work for you and the adhesive doesn’t bother you I wear mine on the top of my arm or shoulder.

Bradclew profile image
Bradclew

Hi on low doses they don’t have side effects but even on that I got very little pain relief

Mickymoo profile image
Mickymoo

Im now on 20mcg of butrans patches (2×10) and find they dont help much with the pain at all. I also take 8 x 30mg codeine a day. Constipated can be a problem so i take laxatives 3 times a week which helps. Now just because they don't help me , they might help you. Ive heard the fentanyl patches are alot better for pain relief so going to ask for them. Did your gp prescribed fentanyl patches or did you have to go through your specialist? Xx

Hi Zepre. I would give them a try as if you don't you will never know if they will help you. I was given Fentenyl about two years ago and have 37 and a half mg in the two I wear. I have not had any side effects but to be honest, I don't think they have really helped, but who knows, I might be worse without them.

My GP was initially reluctant to prescribe them and said that they were only prescribed for people who can't swallow. I know this wasn't true as I know someone who had them at the time and she could swallow with no problem. I then spoke to my rheumy who said it wasn't true what I had been told and wrote to my surgery suggesting I was put on them.

It seems we have to fight for what we want and need these days.

Patches of what?

nomoreheels profile image
nomoreheels in reply to

If you check up the page Zephre has been prescribed Matrifen 12 micro (fentanyl).

in reply to nomoreheels

Cripes, she’s lucky! I wanted to move from morphine to Fentanyl (either lollies or patches) and was told that, like diamorphine (pharmaceutical heroin), Fentanyl was normally reserved for people with a terminal illness, where the strong opiates were not held back. Diamorphine is often given as a nerve block or deep local anaesthetic after an operation, but not generally for daily use. I suppose the benefit of fentanyl is its strength.

nomoreheels profile image
nomoreheels in reply to

Not sure I see it as lucky to need such constant pain relief. I do think though that you've been misinformed, as you'll see from the replies there are those of us prescribed patches of varying med, perhaps see a different GP in your Practice to discuss the possibility again. Personally I've found mine to be of great benefit.

in reply to nomoreheels

I don’t think I’m misinformed, as I do realise patches can be other than fentanyl. However I still view someone who has been prescribed fentanyl as lucky, because it would not be an option where I live. True, it may not be lucky to need constant pain relief, but at least the problem is being addressed. There are those of us in constant pain who are NOT and never will be offered this strong (and very addictive) medicine.

nomoreheels profile image
nomoreheels in reply to

Sorry, by misinformed I mean that these types of transdermal patches are prescribed for other than terminal illnesses, they’re prescribed for pain due to chronic conditions too, where appropriate. Zephre's pain relief needs are being addressed, as are others here. When discussing my options with my GP the usual suspects were suggested, including tramadol, but we decided buprenorphine was the better option for me.

The NICE guideline for fentanyl does include recommendations for uncontrollable pain currently/not currently treated with a strong opioid analgesic (dependant on starting dose), not terminal illnesses alone. For info diamorphine also. It seems for some reason your Practice chooses to reserve these meds for terminal illnesses only.

I wonder, maybe you'd be prescribed suitable pain relief if you requested referral to a Pain Relief Clinic? Can't help to ask.

I hope you're able to find pain relief you can settle on, they can be game changers in managing our conditions.

in reply to nomoreheels

Hah! I don’t think so. The pain clinic don’t prescribe anything at all except acupuncture, useless in my case. I’ve ended up being prescribed methadone - and yes, it’s on the regional formulary for pain. But doesn’t everyone assume that if someone gets prescribed it, they’ve got it because of previous problems with drug addiction? It’s similar with pharmaceutical heroin (diamorphine) and fentanyl. Yes they can be prescribed for excruciating but not terminal conditions, but it’s more normally used for terminally ill patients - certainly in the region I live. Years ago the pain clinic gave me what they called a “pain cocktail” (I realised later there was nothing “cocktail “ about it. It was simply methadone. Now, attitudes have changed at pain clinics and they are far more reluctant to prescribe these drugs. GPs won’t touch methadone (they are supposed to have extra training to prescribe it). When inevitably the pain clinic discharges you back to your GP, the same doctor who was happy to give me 240mg morphine a day, referred me to a drug and alcohol centre for continuation of methadone.

It was a very good painkiller. A very suitable drug as it stays in your system for a long time and reaches many more opiate receptors than morphine does. But that clinic had ONE other pain patient. All the rest had ended up there via illegal drug use or alcohol abuse. Stigma gets attached to methadone users (as it does to buprenorphine users to a lesser degree). The biggest culprits are the medical profession. In the same way, anyone prescribed heroin or fentanyl is assumed to be in the terminal stages of cancer or a very elderly addict (it used to be given to heroin abusers before methadone was synthesised as a drug for pain relief).

Interestingly, until about 10 years ago it was possible to buy fentanyl online - in South America it wasn’t that tightly controlled.

Zephre profile image
Zephre

Thank you everyone for your comments much appreciated will give them a go to fingers x they help cheers 👍

nomoreheels profile image
nomoreheels

They're not buttons that for sure. All 3 patches I've tried are £690 per year at my current dose. Re pregabalin, changing brand could be due to what it's treating. For example when I first started pregabalin at that time generics didn’t list treating neuropathic pain so I was prescribed Lyrica which was. Once generics were listed to treat neuropathic pain I was prescribed a generic, which of course was cheaper.

nomoreheels profile image
nomoreheels

Maybe a misunderstanding Ajay, or she noted your wariness & was sympathetic to it. I've not been aware of any change since swapping to generic pregabalin. Should things change & generic is prescribed I hope for the same for you.

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