OxyContin doctor said I need to come off it because NHS England say so

[Bhappy79]

Hello I’m on 80mg 2bd I’ve been taking it a year without any problems my pain is managed. I’m terrified that I will be in a lot of pain without it can anyone give me any advice please

[Bananas5]

Do you mean you are taking 160 mgs per day? This is a very high dose.

My husband was prescribed that dose 3 yrs ago...we moved abroad and the new pain consultant decided she wanted him off it completely.

It is a very strong and addictive pain meds but with care and support he weaned off it over 2 yrs.

His pain is no worse than when he was taking it which I hope will encourage you.

Recent research has shown that long term use and/or increase of strength has no effect on chronic pain.

x

[ssdw1958]

If there is any way you can stay on it do it. I live in Massachusetts USA and with AMPYRA they came out with a generic AMPYRA and I was told I had to go on the generic. Well I did for two months and I saw a big difference in my walking and it wasn’t good. So I called my Neurologist and told him what was happening with my legs. They felt like lead. And I asked him if he could give me a prescription for the real AMPYRA what you did I am back on it and my legs still feel like lead. I am hoping I can get back to the way I was before I started the generic. So I’m trying to tell you is neurologist and told him what was happening with my legs. He felt like lead. And I asked him if he could give me a prescription for the real AMPYRA what you did I am back on it and my legs still feel like lead. I am hoping I can get back to the way I was before I started the generic. So what I’m trying to tell you it is try to stay with what is working for you.

Good luck. These people who don’t use these medicines have NO idea what is going on. I don’t mean your doctor it’s the other people who make the wrong decisions about the medicines we use.

[Poppy_Ann in reply to ssdw1958]

Here in uk we don't get a choice if the NHS has decided that they can get a generic for 1/2 the price then you are going on the cheaper one.

[RxMan in reply to Poppy_Ann]

Oh, it's exactly the same here in the US... if a generic is available, your insurance covers it...if you demand the brand name, you pay entire cost.

[mabel22]

Hi Bhappy79,

Hopefully I can reassure you that coming off OxyContin will make you feel no worse pain wise & physically might make you feel better.

I had to change GP’s last September as the practice I was with were dreadful. It took them 18 months to arrange a review appointment for a Bone Density Scan plus they never reviewed any of my medication!

When I joined my new practice I had to have an appointment with my GP before the practice would take me on to discuss my medication. My GP explained that he would want me to slowly come off OxyContin. He explained the concerns regarding the drug (which I was aware of) & that he had a patient die last year where OxyContin was a significant factor. I was on 60mg for 10 years+ & we agreed that I would reduce by 5mg a month.

I am now on 25mg & I can honestly say that as yet I have not experienced my pain levels increasing. Yes I still have pain but that has always been the case, no matter what medication I have been on. In the last couple of months I have noticed that I am waking up more alert in the mornings & I have not had any withdrawal symptoms which I have experienced in the past when I have missed doses etc. It will take a year to finally come off the OxyContin & I think that is the key thing. For me personally, I wish I had done it sooner. I have a really good GP now who fully supports me.

I hope this info helps you & good luck with your decision x

[Kate-L]

If its a case of cost then ask your GP if you can be switched to 'Shortec' and 'Longtec' the generic version of Oxynorm/Oxycontin. They are exactly the same - same box, same pills, same ingredients only the name has changed. I've been taking mine for several years now, although I only take them when I am in pain not every day (a bit like a paracetamol!).

BTW it's not NICE who say you can't take a medication, its your GP or Pain Clinic.

[Charliejeal in reply to Kate-L]

Kate , in some areas it's the local CCG interpreting advice from NICE, NHS England and the Royal College in their own way. I was prescribed Tapentadol by a Pain Management Consultant at one of the world's best orthopaedic hospitals, they invented hip replacements there !!, as modified release morphine just wasn't working. Luckily my GP's wife is a Palliative Care Consultant so through her he was clued in regarding Tapentadol as it's still very rarely found outside Palliative Care let alone in GP use. After roughly a couple of months the Tapentadol was doing a great job , with no noticeable side effects and it helps with nerve pain unlike morphine, our local CCG in their wisdom decided to code Tapentadol as unsuitable for use in General Practice so he had to fight to keep me on it. Across the country all GPs have been told to be wary of higher prescribed doses of all opioids, but they can only suggest you try and reduce the dosage, you can insist that you don't.

[healthfare]

A combination of amitriptyline and fentanyl patches at low doses together with if appropriate gabapentin And breakthrough pain cover with much lower dose oxycodone slow release may help.

[Alanjones]

They tried the same trick with me only that they arranged for me to attend a pain clinic. I attended but could see through this ploy after the first session, it was obvious my pain issues was secondary because their agenda was to get me off my Oxycontin ASAP. To cut a long story short I informed them I will not be attending any more sessions because the pain clinic route was not for me and I added any painkiller reductions will be done through my GP.