Drug reduction

[Libertina]

I received a phone call last week from the pharmacist attached to my doctors surgery explaining that my gp had asked her to contact me as there is a nationwide move against using large doses of opiates for chronic pain conditions,.apparently it is no longer thought that its beneficial so they want everyone down to the morphine equivalent of 120mg. Well I'm on 360mg with various medications added together now previously the pain clinic reduced my opiate levels and I ended up barely able to function because I was in so much pain, I couldn't manage to home educate my son (he's 11 and autistic with SPD as well) all this left me feeling incredibly useless and guilty which just made my depression worse and I reached a point where I had decided that everyone would be better if I was dead. So I explained this to her and even told her that the gp having realised the situation let me increase my meds again. At this point she kept trying to explain to me that she understood how I felt, I was polite and explained that I had never imagined when I was younger that I would be in a wheelchair due to permanent nerve damage due to two prolapses in my spine and then that this was just one more thing that was getting taken out of my control. So she told me that she could support me through this or my gp would support me failing that it would be the pain clinic. So I asked what would be used to replace my opiates and she said nothing and that I would have to get down to 120mg and then wait approximately 6 months to allow my body to reset itself before they would look at offering any other drugs. I'm just wondering if this is happening to anyone else and if anyone has any suggestions to help me and my family through what I know is going to be a really hard time.

[CheetieCat]

No not so far anyway, that's really awful & so stressful for you, do they really think people would take these meds if they didn't need to?

I would speak directly to your GP explaining very clearly the issues you have now & how you were affected previously, barely able to function with increased pain levels & how it seriously impacted your mental health.

Surely can't be right to take you off medication without replacing with an alternative for 6 months?

[Libertina in reply to CheetieCat]

The clinical pharmacist said that they can't give me anything to replace it in the meantime because that would go against what they are trying to do. The thing is I still have pain but the meds dull the pain to the extent that I can live my life. She explained to me that sometimes the opiates can make the pain worse and it's highly likely that when they reduce my opiate levels I'll find that I don't need something to replace them as I'll no longer be in pain. As if fibromyalgia isn't real, but I was overweight and was told my pain would be instantly be better if I lost weight which I did but then the pain clinic doctor told me not to expect my pain levels to improve because chronic pain conditions don't work that way. Yet the are going to greatly drop my meds without replacing the meds and expect me to be able to cope. I'm already stressing about it which isn't helping.

[CheetieCat in reply to Libertina]

Hi, have been doing a bit of reading, this patient leaflet appears to say other meds can be increased to help with depression/anxiety and I would assume pain whilst slowly reducing at the patients pace.

Working WITH GP not told from pharmacy meds getting reduced.

Definitely speak to GP, let them know how much stress/worry they have caused you unnecessarily by not taking the time to speak to you personally about this, explaining fully the reasons for it and reassuring you they would be able to increase your other meds as required.

ouh.nhs.uk/patient-guide/le...

[Libertina in reply to CheetieCat]

Thank you I've actually read that leaflet as the pharmacist actually sent me the link. The thing is part of the problem I'm having is it's just one more thing I have no control over which is making my depression worse. I've even thought seriously about taking things into my own hands and just going cold turkey I know that it won't be easy but I would hope that it would mean this would be over much quicker and then they could look at sorting me out with different medication to help with my very real pain.

[jb007]

My GP has done the same but not with opiates, I have been on medication for 40 years and they just want me off it, they dont care about pain anxiety ect . My medication is now being reduced weekly by a clinical pharmist and a social prescriber My GP passed it on to them to sort out , I cant manage and i have told them but they dont care.......

[Libertina in reply to jb007]

That's what I'm scared of that when I tell them I can't cope they won't listen and I'm going to put my family through hell because I'm in so much pain and they will have to do extra work in the house because I can't. One of the worst things about disability for me is feeling useless. I hope you have support to get you through it x

[jb007 in reply to jb007]

My Clinical Pharmist phones me at home every 2 weeks to see how i am getting on, she starts off all nice then it gets nasty lol well i do it ends up in an argument sometimes she leaves me alone other times she just takes an extra tablet away every day, I get so angry with her. I have just wrote to the Practice manager to change GP try to find a GP who will listen to me.....

[Libertina in reply to jb007]

It's ridiculous perhaps they are trained to be so happy thinking it will help when in reality it's just annoying as hell either that or we've got the same woman😂

[KnackeredKaty]

GP's are always looking at ways to reduce their costs. It's not good when a person has to rely on medication just to get through each day. Saying that, they just don't have a clue what it's like to have severe pain 24/7. I would argue your case and insist that they look again at changing any medication you are taking now. I have found that taking vitamin D has helped my pain, if you're not taking it, it might help you as an extra, but not at the expense of everything else.

[Libertina in reply to KnackeredKaty]

I actually already take vitamin D along with other supplements as I'm post bariatric and after the surgery you have to take vitamins and B12 injections for the rest of your life, but thank you for the suggestion.

[nsb0]

This has happened to me as they are saying that morphine is addictive. What they have done with me is to reduce my morphine down to 120mg and have given me 120mg of Duloxetine and if I have muscle spasms they will give me 3 days of dimazipam but you can't have them on repeat. Also have to get reviewed every month for up to 6 months to see if the pain is manageable.

[Libertina in reply to nsb0]

I'm already on Gabapentin and they are allowing me to keep my tramadol and oramorph but the pharmacist insisted that I don't increase the doses that I'm taking presently as that would go against what they are trying to do. I just got so depressed last time that they made me reduce my meds that I had a complete plan in mind on how to end it all and I don't want to feel like that again as its not fair on my family when I'm in such a dark place. When I told the pain clinic last time they just told me I shouldn't underestimate how much I'd achieved reducing my meds but it was as if they weren't listening to the fact that I was sick of bringing my family down with me and thought they would be better off without me.

[Hereward_68]

The exact thing is happening to me to. My GP used to let me manage my pain and meds almost entirely but now they have reduced my Fentanyl patches by half and they want me to come off them completely within 6 months, they have reduced the amount of Oramorph considerably too.

I don’t particularly want to be on these meds but they aren’t offering me any support or any alternative medication.

This is going to make lots of people more depressed and unable to basically survive!

It’s just crazy.

[Libertina in reply to Hereward_68]

I was told that when they got me down to the magic number 120mg that I would then have to wait another 4 - 6 months before my body would adjust enough so they could see if I needed pain relief anymore??? So I asked "what you are telling me is that you want to cut my fentynal patches down drastically but I'm not going to be offered anything in the meantime to treat my pain.* To which the response was "yes but we're going to go through this together."

Well no I'm sorry but unless you have a chronic pain condition then we most certainly won't be going through this together.

[Jeff1958]

I had a lot of trouble with morphine , it caused me to have difficulty walking , constipation and tiredness , its not a good drug to be on , now i am on Tramadol and its not much better , maybe we can get an expert that is more concerned with the patient and not costs .

[Libertina in reply to Jeff1958]

I agree that morphine isn't a good drug to be on and some of its side effects are horrible and as you say Tramadol isn't great either and I would love to not need these meds. I've tried quite a few things in the last ten years some have helped for a while, others not at all. I never thought when I was 20 that 18 years later I would be in a manual wheelchair and and 5 years after that I would have to go into a powered wheelchair. I would love to meet a doctor who wasn't made to find the cheap option for his patients but sadly I'm not sure if that's possible in this day and age. I have no doubt in my mind that this nationwide movement to get opiate patients down to only 120mg is nothing more than a cost cutting exercise and doesn't bode well for the future of the NHS.

[Libertina]

I do believe she was a clinical pharmacist although I will admit not sure what the difference is. Sorry for the confusion, she definitely wasn't the pharmacist that works in the pharmacy attached to our doctors as I know her quite well as I dare say quite a few of us know our regular pharmacists. I think one of the annoying things I found about the whole telephone consultation was the fact that she sounded like she had overdosed on sunshine, the words chirpy and bubbly come to mind and when you're getting the news that no matter how you feel about it your pain medication is getting taken away and nothing is given to you in replacement the words chirpy and bubbly are the last things you want to hear.