This is my edited post: I have been on Fentanyl... - Pain Concern

Pain Concern

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This is my edited post


I have been on Fentanyl for 15 years and now my doctor (who has never seen me in their lives) is trying to reduce my amount. My doctor doesn't know anything about the drug, or why I am on the drug. If he reduces the amount I will be in crippling pain and I will be bed ridden. I am a pensioner and I live on my own. The doctor is saying that I have to go from 75mig to 62.5 by putting a 50mic plus

a 12.5mic. This proves that he doesn't know what he is doing because even on the NHS website it says that you have Never to put two patches on at the same time.

But the main reason I need help is that he says that he's going to reduce my medication every two weeks. I need to know if there is any where to go regarding this matter. I have asked my doctor to refer me back to the surgeon or the pain management clinic, he just said no and then put the phone down on me. Please help me if you can or else I will be in a lot of pain and bedridden.

11 Replies

Hello. I am also a pensioner who has had Fentanyl patches for over 10 years. I am on a lower dose than you but I am prescribed enough to enable me to wear two at a time if necessary. I haven't looked at the NHS website but I have seen several doctors/clinicians over the years and my situation has never been questioned.

I have now looked at the NHS website and I think the recommendation regarding two patches is to prevent people on higher doses from overdosing. I know how easy this could be if you are in terrible pain but if your doctor is trying to reduce your dose it is acceptable to put one of each dose on.

I know it might feel like politicians are making these sorts of decisions, but they aren't. It is coming from research. Medicine isn't a static list of truths that will never change, it is constantly developing, with new knowledge superseding old knowledge. One of the areas where this has happened recently is in the knowledge about how opioids work on the body.

These drugs were originally meant to be used with end of life pain caused by cancer. But then the drug companies pushed it for any pain. However, they didn't have the knowledge about all the different kinds of pain, and all the different ways that people metabolise drugs.

For instance there are some people that don't metabolise opioids very well, so they take the recommended dose and when it doesn't work they think their pain is so great that the normal dose doesn't work and they take a higher dose. And if they keep taking a higher dose then they run the risk of overdose because there is so much drug already in their body. For these people there is actually no point in taking opioids because they just don't work properly. it isn't that their pain is greater than other people's pain, it is that this is not the right drug for them.

Then there are other people that metabolise opioids too rapidly, which means the drugs work a too well. They are off with the fairies with the lowest doses, but those doses wear off quickly. And they too can be at risk of an overdose.

And there are people that are in the middle who can take moderate doses for acute or post operative pain for short amounts of time, and it works. I guess you could call opioids Goldilocks drugs!

There is another reason why opioids are not brilliant if taking for a long time in some people. When the brain knows there is pain, it is a good thing. It is protective. Opioids damp down that pain, and the brain starts to think hang on, there is pain, and I am not feeling it, I had better wind up the pain levels to tell my body that there is still pain. And eventually we get to a situation where the brain is feeling pain where there isn't any because the pain circuit in the brain has been ramped up to 13.

Yes, taking opioids long term can actually cause more pain.

So this is why there is a move to cut back on opioids, it is nothing to do with Trump or politicians. And everything to do with neuroscientists that study pain.

But that doesn't make it any easier for you. If you can tell your doctor that you would be happy to cut down on the drugs, but only under the care of a specialist from the pain clinic. if they refuse, (I am assuming you are in the UK?) then contact the practice manager and explain the situation and that you want a second opinion.

If you show willing to address the reduction in drugs all be it with support from a pain specialist, they are more likely to help you.

Good luck, I hope it works out okay.

MarcDear in reply to cyberbarn

Thanks I will

Do that and I will let you know what happens

MarcDear in reply to cyberbarn

I have done everything that you advised and this is what my doctor has told me. Yes it is the government that has told all doctors to stop giving Fentanyl to anyone who is on it. So I asked the doctor if I agree to the reduction of the drug but under the supervision of a doctor from the pain management overlooking. He has agreed to do this, but he states pain management might not agree to see me. Now my problem is that my doctor wants me to put a 50microgram patch with a 12.5microgram. Now on the NHS site it says Never put two patches on as this could be fatal. So, if I don't get any help from pain management there is no way that I am going to put two patches on off a man that has no idea what Fentanyl does and how it works, this is a doctor who thinks that you can take the drug orally. But I do respect your advice and help so I thank you for your help. I do hope that pain management will help me with this issue. Another thing that my doctor is suggesting, is that I take more oralmorph to compensate the reduction in my Fentanyl, well that will not be any help as the reduction in Fentanyl would equal a full bottle of oralmorph and I can't see the doctors giving me that amount of the drug.

Anyway I appreciate your help and I will keep you informed of my progress.

cyberbarn in reply to MarcDear

As others have said, the NHS site is a general information site and they say don't put two patches on at once in case of overdose. Imagine putting two 100 patches on at once? That would be an overdose. But putting a 50 and a 12.5 on at once is fine, that is how they reduce doses.

A doctor doesn’t know anything about fentanyl? Doctor doesn’t know why you’re on it? Those are two good reasons for his not being the one to supervise your continued use of it.

I was also on Fentanyl for 15 years, finally ending up on 100 mcg until I decided to reduce the dose myself mainly due to the fact that I had pancreatitis and didn't know it because Fentanyl had masked the pain. That was my wake-up call so I kept decreasing the dosage by 12 mcg gradually. I also used 2 patches together but it took over a year to reach 25 mcg and then I needed help from pain specialist to wean off Fentanyl altogether, which I did in 2018. From a personal point of view, being weaned off any drug too quickly isn't going to help you, especially after using it for so long. I had a GP who had the same attitude as yours, so I changed both my Gp and pain specialist which has worked really well. I know how scary this all must be for you but a good pain specialist won't rush your tapering off Fentanyl so I'd demand to see one and your current GP doesn't have the right to deny your request. I am still trying to find the right pain meds that will take the edge of the pain but I am realistic enough now to know that I won't ever be totally pain free. Fentanyl really is an 'end of life' drug and I found that I had to change patches every 48 hrs instead of 72 hrs so my health suffered badly. Hope this has helped you.

MarcDear in reply to MaxC20

It has helped me by you just agreeing to my plight. Another thing is that the doctor said that he is going to reduce my dosage every two weeks. There is no way that I can achieve this without replacing it with morphine. I have been in a state of withdrawal before and its not nice in fact I would rather die than go through the feelings of withdrawal again. How can a doctor put anyone through it, do they not have any empathy at all doctors. I also know that my pain is not psychological it's real damage to the nerve, so I will have to be given a alternative drug or I will be confined to my bed in pain. I am 66 years old and I am not going to spend my last years in pain, even if I have to break into the chemist and take my own. Then the government will have a bigger problem than before Trump opened his mouth.

Hi MarcDear, ive been reading your problems! How are you? is there any change? x

It’s your right to ask to see another GP or to be referred to hospital .... if they won’t then you need to report your Dr to GMC

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