GP messing with medication

[SimplySteveRedux]

Moved in October last year and had to transfer GPs. I take around 15 different medications each month and have seen numerous professionals over the years, and has taken close to a decade to find a medication regime that works for me.

However, my medication was summarily reviewed in November, and no changes made. Since them I have had a strong opiate removed from my repeat and I have to request it individually; same with diazepam,; same zopiclone; same anti-sickness drug. I've now been asked to attend another medicaments review.

AIBU to question what they are doing? How do I prepare to deal with - I will be in a terrible state if the above three medications are deemed unsuitable, and worried they may individually target others. I have several medical conditions, some of which are rather broad in regard to symptoms. Not sure what to do here!

Thanks for reading :)

GPs (and other doctors) absolutely shouldn’t change medication without even discussing it with the patient, YANBU in that respect. I do think some people with chronic pain become physiologically dependent on certain medications and I feel much better having come off opioids. I truly believed I’d be in more pain but it’s been 2 years and overall, my pain isn’t worse but I am feeling better as I’m no longer severely constipated, drowsy, nauseous, having weird dreams and various other things. I wish I’d done it sooner. I spent many years suffering with those side effects and it took many, many months off those meds to realise it wasn’t actually helping my pain.

Some drugs can't be on repeat any longer. My GP explained it was due to the black market with one 2mg diazepam going for £10 on the street.

It's just the way it is, it now requires an appointment with GP.

you've no idea of the physical and psychological restrictions it placed on quality of life.

I'm not taking these drugs for fun, it's so I can at least have some semblance of a life.

OK, I was letting you know the policy from a medical perspective, as thats my line of work, and you didnt seem to know.

Ill just f* off then as I dont suffer with chronic pain. Maybe change the thread title to say you only want to hear from those that suffer from it.

sorry OP but I can't help wondering

how on earth do you get a regular prescription for Zopiclone?

PS not even chronic pain and better sleep aiding quality of life will get my GP to allow it.

My apologies @Letsallscreamatthesistene it absolutely wasn't my intention to single people out, just a general statement that I've experienced, and read of others receiving the same treatment on various forums. I appreciate you, and everyone else, giving up your time and providing advice.

how on earth do you get a regular prescription for Zopiclone?

Self harm, zero self worth, self esteem and self respect. PTSD related panic attacks that make my heart rate soar and blood pressure to act up. The zopiclone (and diazepam) are there to numb any emotional issues that arises. Both zopiclone and diazepam don't deal with the underlying issue though, they simply mask the feelings.

SimplySteve similar here.

my GP just won't give. I can barely get diazepam. Och well.

hope you get all your prescriptions sorted it, it is a pain. And particularly annoying if they are saying it relates to the street value etc!

@AutumnRose1 I forgot to add that I'm often awake all through the night, and that is when my self worth issues kick in. Also continuously feeling like I'm an abject complete failure.

Same here with zopiclone I have to request it separately each month. These are the hoops GPs have to jump through now.

@Letsallscreamatthesistene

Don’t worry, you didn’t do anything wrong. Some people lash out because they feel their pain medication use is being judged. I used to feel the policies were out to get me and that the doctors/HCPs just didn’t understand me. I now see that I was in pain and scared. As it happens, all these drugs served to do was give me side effects. You can tell someone into you’re blue in the face that evidence is limited on long term effectiveness of opioids but until you figure it out for yourself, there’s no point.

Simply yes, this has been discussed on other threads and most of us have just been told if we can still sit in a chair, we are getting enough sleep.

I've been given heavy meds after going slightly strange after 3 nights of no sleep and one poster was taken to hospital so they could medically induce sleep.

still, seems they'd rather do that to us than prescribe Zopiclone - or Zolpidem in my case.

Schuyler your experience is not universal.

What studies and RCTs show is effects of an intervention at population level. They do not evidence or predict how any one individual will react.. This can depend on many things, including genetics. However studies usually do not test genetics and categorise participants accordingly, and drs do not genetically test patients before prescribing. This has the effect of lumping everyone together, as though we are all robots who respond identically. We don’t all respond identically.

As an example, people’s response to medications, including opioids, will depend on how many active copies they have of the genes that determine how much of certain liver enzymes an individual produces, and hence how quickly and extensively the liver metabolises the drug. Some people are ultra-rapid metabolisers, some are slow metabolisers and others (most, probably) fall somewhere in the middle. An ultra-rapid metaboliser will have a very different response to an opioid than will a slow metaboliser. Neither will necessarily respond ‘typically’, as this is deemed to be akin to the response of those with an average level of liver enzymes. This can be dangerous in some individuals, who can reach levels of toxicity on a relatively low dose. Some people will get a good pain-killing response, some none at all. Some will get few side effects, others lots. Some will feel euphoric, some depressed.

These differences have been known about for some time, yet we are never tested before prescribing , are we? It would be a good way of determining who will get a good effect from a drug and who won’t. It would also likely weed out who is more or less likely to suffer rapid dependency. As it is, the studies lump everyone together and then we get erroneous results which indicate the drugs don’t really work across the board. This is false. The reality is they work very well for some, and not at all for others. We just don’t know who is who, because we don’t bother to test for it.

Easier to just let those in pain suffer, I guess.

For example, last month on day 3 of my period I had really frightening levels of pain. I took my highest dose of morphine and within 30 minutes the pain was bearable, to the point i could stand up. It works for me. I vary my dose as needed, this prevents a spiral of increasing doses which is how I ended up on insane doses before (truly insane). I’ve maintained the same consumption level per month for three years, and it works for me. It’s not ideal, I’d much rather not have pain, but that’s not going to happen.

@Tolleshunt

You’re right, my experience is not universal. Neither is anyone else’s, especially as we all probably have different causes of pain. I was just sharing it because other people shared their experiences of life with chronic pain and strong medications. I’ve been there and now I’m somewhere different, albeit still in pain.

You’re also right about studies and population levels but I wonder if that’s true of many studies.

I’ve had Zopiclone for two years and have to request it every month and go to an annual review.

@SinkGirl

I was on constant doses of codeine, then added in morphine and ended up on morphine and buprenorphine. I took it daily and regularly, needing increasing doses. That’s what caused me the concern for myself - taking it every day for a decade, every 6 hours and over the years, needing escalating dosing. I didn’t get acute episodes of pain, like you’ve described. I had a continuous level. Sounds like we have very different conditions and I was concerned about how much pain I was in despite how much I was taking.

I also reckon it is true of lots of other studies, Schuyler. I think ‘evidence-based medicine’ sounds like an absolute no-brainer on the face of it, but I find its results sometimes leave a lot to be desired. I view studies as a good starting point, rather than the be all and end all. I’ve had zero effect from apparent gold standard treatments on occasion, and great results on things there is ‘no evidence for’ on others. IME it’s way more individual than it is usually presented.

Re opioids, I get absolutely no pain-killing effect whatsoever from them. They do give me horrific nightmares and make me extraordinarily depressed though.... My sister, however, gets amazing pain killing effect and feels europhic She also loves the feeling she gets from a general anaesthetic, whereas my blood pressure drops through the floor, I feel like I’m dying and vomit uncontrollably for three days after one (nice!). Go figure! 🤷‍♀️

I understand - I too have pain all the time and take opiates every day, but I take as little as I can most days (and grit my teeth through the pain that remains) so that on the days where the pain is completely unmanageable the painkillers still work. I know you can feel much better when coming off or dramatically reducing as I did several years ago when pregnancy meant my endometriosis and adenomyosis pain improved a lot. Unfortunately it’s much worse now but I’ve been battling not to let my dose increase as it’s not a good path to take as you know. I had to have my gallbladder removed when I was on terrifyingly high doses of fentanyl and oramorph and they couldn’t manage my post op pain at all. It was hideous.

After my c section my pain was managed by less than what had been my standard four hourly dose at the start of my pregnancy.

I had a really good GP when I had sciatica. My painful bum barely hit the chair, she winced at me walking in and started typing up a prescription. At one point I was on the max dose of paracetamol, naproxen, diazepam, oramorph and 60mg x 4 dihydrocodiene. If anyone had suggested the pain management clinic at that point I would have lamped them. Someone did suggest Pilates which was helpful as I couldn't walk
I was grey with pain and nothing was controlling it, it was the most relentless nerve pain that I told them to cut my leg off. Luckily(!) i then lost all feeling which was a nice relief
I came straight off all the drugs post op, no issue at all
Yet this year I've had massive insomnia issues which happens maybe once every year or so. Usually get a few zopiclone which resets me and I'm fine. Not this year, not allowed
So rather than having 3 zopiclone I've spent weeks without sleep which seems ridiculous

From what you’ve said OP, they haven’t stopped your medication, they’ve just made it so that you have to order the controlled drugs individually rather than having them on repeats.

The drugs you’re taking probably have a weekly street value of hundreds. They are highly addictive. Do you really think that a GP who hasn’t assessed you face-to-face should just dish these drugs out without question?

GP surgeries aren’t shops you know. We are held accountable for every single prescription we sign, and there are very strict guidelines when it comes to controlled drugs.

TRIGGER WARNING

'In extreme cases who cares if someone is addicted to them if that’s the difference between them being bedbound and actually having a life?'

Their families and friends care because these drugs can have horrific side effects. My friend died from them as a result. She didn't even take as many as a lot of people I know either. My friend's DH is battling an addiction to prescription painkillers and the rate he's going he's going to end up dead too. In answer to your question it can be the difference between then being bed-bound and in a box six feet under.

Believe me, I know how hard it is. I suffer from crippling chronic pain (it's why I'm awake right now and probably won't sleep tonight) but I also know that these drugs are not a silver bullet so I do everything I can not to rely on them.

I think people who haven’t been in long term pain can be very judgy about people using these medications. It’s very easy for people to say they’re addictive (which they can be) and that everyone should be coming off them but when someone’s quality of life depends on them that’s not always a straightforward thing to do. In extreme cases who cares if someone is addicted to them if that’s the difference between them being bedbound and actually having a life?

Yes, yes, yes

The drugs you’re taking probably have a weekly street value of hundreds. They are highly addictive. Do you really think that a GP who hasn’t assessed you face-to-face should just dish these drugs out without question?

@Mintychoc1 Except they HAVE assessed me when I joined the surgery, it simply makes no sense to be subjected to this less than three months later.

Your facetious comment regarding GP surgeries not being shops is unnecessary, inflammatory and snobby, as though you're looking down on me.

I'm aware of addiction issues, I'm aware of what drugs are used for my various conditions and am very aware of any potential issues. I consider myself well informed.

Instead I have to attend an appointment that is going to incur me significant mental pain and stress due to PTSD, CPTSD and GAD.

I agree that the comment about GPs not being shops didn’t come over well.

No, GPs are not shops, but they are required to act in the best interests of their patient (rather than subordinate their patient’s interests to general concern about what hypothetical other, unrelated people might be getting up to).

Other drugs are put on repeat, eg asthma inhalers, reflux drugs, etc, etc. Do you feel those patients are ‘treating you like a shop’, when they request a repeat, Minty? Or is it merely a sensible arrangement for all concerned to reduce wasted time, money and effort?

I get why these drugs are tightly controlled, but that doesn’t meant it isn’t very stressful for the patients who genuinely need them.

As a patient it can be extremely worrying to be kept on a tight leash re any medication, and things like not being able to reorder hardly any time in advance, leads to stress and worry. I realise it’s a country-wide policy and not down to GPs, and I realise the well-meaning intentions behind it, but I don’t think it’s always recognised how wearing this can be for a patient. Nobody who’s ill needs that extra stress. And the hoops one had to jump through if, heaven forbid, one forgets to order with the requisite 48 hours notice (because when you remembered to order it was ‘too early’ and then other issues crowded out the need to reorder, so it was forgotten), or the rigmarole one has to go through when extra needs to be ordered because of a long holiday.

Steve now has to worry that he might have a fight on his/her hands to get the medication he needs. I wouldn’t have thought that would be at all helpful to the conditions he’s mentioned - would you, Minty?

The trouble is that a good GP understands the significant link between opioid use (particularly long term) and psychiatric problems. Opioids can cause and exacerbate anxiety and depression.
Depression and anxiety can make pain perception worse and analgesics can be the cause of chronic pain.
They are right to review your potential addiction and the affect this has on your mental health as it’s a very complicated area of medicine. Whilst you fear being worse without opioids, in the longer term it might be beneficial to consider alternatives such as CBT.

It’s not about judging you but the GP probably takes a more holistic view of pain that is a symptom not a disease.