Removing ms Continus : Like many people on here... - Pain Concern

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Removing ms Continus

Keaney
Keaney
34 Replies

Like many people on here, the pharmacy practitioner from my doctors surgery has decided she is taking me off morphine slow release tablets and oramorph, I’ve been on the same dose for 6 years, I’ve really really struggled to not let my dose go up, regardless of the pain, as I’m a carer for my 82 yr old dad and for my 14 yr old daughter who has cerebral palsy, and frequently falls, so I need to be able to get around the house for them, and look after them, some days I just sit and cry cos I’m in so much pain, not once did the pharmacy practitioner ask how my pain was, not even the 1-10 scale, I am absolutely panicking, she suggested paracetamol , really ? I spoke to 111 as suggested on here, but they just said to ring my gp, I can’t get to see or speak to him until the middle of December, no clue what else I can do, the thought of being in all this pain with only paracetamol to help is terrifying to me, I’m not sure how I can cope, her reasons for taking me off the pain meds is that it’s not healthy to be on them for so long, she also said that I’ll get withdrawals, but it shouldn’t be to bad which I don’t believe for a minute, and I don’t believe it’s cos it’s not healthy. if she was worried about me being ‘healthy’ she’d have asked about my pain level, I can’t help thinking this is all about the money. But now what can I do,

34 Replies
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Oldham12

Hi

Could you get an emergency appt at your dr's. I'm on line and can book an appointment first thing, no phone call needed. If I wasn't on line, instead of phoning, if you can get someone took after your daughter and your Dad, you could go round and queue before they open. Good luck in trying to get an appointment. Take care of yourself Lynne

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JustinD

I understand. I’m 34 and had status seizures that broke my t3-t8 which they told me because of my osteopenia would never heal. I was 26 and am 34 now so everyone looks at me like Im healthy and I have had both shoulders replaced and already dislocating. I have a C2 fracture and C1-C2 fusion. I have twins and they’re 4 now and I’m supposed to lift 5lbs max but my twins are around 40 lbs each now after being born at 5 each. Those are just some of the ailments and I find myself crying because today is the best condition my body will be in. The pain scale I don’t have an answer for because I had broken many things before but my neck when it started spasming and they maxed me out on pain meds before surgery. I didnt think I could feel pain like that and then breaking my back was horrific but I was expecting a recovery and for them to say it won’t heal. 8 years later imaging hasn’t changed. Dr. wanted me on Fentanyl but I had twins on the way and had to be clear so Hydrocodone is like children’s tylenol. Im tired of never hearing about people in chronic pain, worse than mine who are jumping through so many hoops and my wife is a nurse and many dr’s just wont prescribe pain medicine anymore. Im sorry for your pain. I can only try and empathize.

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Oldham12
Oldham12
in reply to JustinD

Hi

I'm sorry to hear this. I too am in 24/7 pain due to many conditions. One hour or less sleep per night but you sound worse than me. You are in my thoughts and prayers . Lynne

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FRreedman

I would write to the practice manager, recorded delivery, and request an urgent meeting, prior to amending medication. If you feel that won't work, I would also cc CCG (Clinical Commissioning Group). You can then explain, in more detail what you are requesting and why - (tapering off morphine - being given something to balance the loss of analgesia with something else -Nortriptylene??). I wouldn't go into too much detail in your letter, as they will have more answers than you've got questions, but I would be adamant that I wanted answers prior to being denied the pain relief I had been getting.

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Keaney

Thank you all for taking the time to reply, I did ring 111 this morning after speaking to the pharmacy practitioner this morning which was totally out of the blue, quite a shock for her to tell me they were getting me off the pain meds, and quite frankly her attitude was, we are taking you off the pain killers, end of story, she didn’t once even ask about my pain level, or how I felt about it, anyway 111 told me to contact my gp who is away for 10 more days yet. That was at 10am and then 10 mins ago I got another call... same pharmacy practitioner, but a totally different attitude, and said that having read my notes again perhaps it wasn’t such a good idea ? What the hell !!! Am I to assume 111 rang the surgery?

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FRreedman

Maybe she is a member of HU Pain Concern, and saw the thread taking shape. Well, now you have got what you wanted, a chance to have things explained to you, and for you to explain to them. Do NOT say I need the morphine (dependency), but emphasise you need something strong enough to take its place.

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Keaney
Keaney
in reply to FRreedman

Yes I’ve made an appointment to see my gp when he’s back, I don’t think he will agree with the PP, he’s the reason I got through my back surgeries, I just so shocked at her personality switch. I do not like being made to feel like a druggie, it took weeks of unimaginable pain for me to agree to taking the slow release ms Continus morphine on a regular basis, it took a while for me to understand the importance of keeping my pain on a level I could cope with, so to then be made to feel like I’m just taking them for fun.. grr v unfair.

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Ardraven
Ardraven
in reply to Keaney

Sorry, I hadn't noticed this when I wrote my initial reply. I was so concerned about the idea of you being forced in to withdrawal with potentially dangerous consequences that I wrote that before I'd read the whole thread. I'm glad to hear that she changed her tune for now whatever the reason. I hope things go well for you with your doctor. It isn't easy when painkillers are all that's keeping you functional and those in charge of your medical care want to take them away. I would tell both the GP and the practice manager how this has made you feel if you are up to it. It makes it much easier to avoid causing anxiety to patients if they are told when and how it happens, plus they may tell you about things you can do if you have a similar issue in the future. Good luck and please let us know what happens, I'm worried about you!

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Bananas5

It is important you do NOT stop taking your medicine suddenly. ... If you want to stop treatment with ORAMORPH, ask your doctor how to slowly decrease the dose so you avoid withdrawal symptoms.

Whoever she is who has stopped this drug should be sacked. No one should be forced through withdrawals

x

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Ardraven

Wait, you were saying that she said that you would get withdrawals but they wouldn't be too bad? Do you mean she is taking you off morphine without tapering the dose?

If that is the case then you need to complain to the practice manager immediately if you aren't offered an appointment with another member of staff who can make decisions about your pain relief before your existing supply will run out. However much people who think that all people dependent on anything are just weak and that if you take medication as prescribed you can't become physically dependent like to dismiss the idea, some symptoms of opiate withdrawal can be life threatening. Over the counter medication may not be strong enough to treat these symptoms either. Therefore if anyone at your GP practice is stopping a strong opiate like morphine after 6 years of continuous administration without offering a sufficient taper to avoid withdrawals, especially in the absence of any danger in administering the drug other than potential long term health risks, then they are not only putting your life at risk but they're dangerously negligent as well!

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Delzek

It is not the Pharmacist's job to stop medication! Unless it can cause problems if you are taking other medications. If you can not get an emergency appointment with your Dr ( they have to fit you in for a ten minute appointment if you call between 0800hrs and 0900 hrs on the day of your call ,that is in the UK) then contact your Consultant or Pain management clinic ! Again the Pain clinic can get your Consultant to give you a call , you can then explain the situation . If a Pain management clinic or any other Consultant has prescribed or Recommended either Oramorph or/and Zomorph or any other Pain management medications then only She/he can take you off of them! Unless of course you abuse your medication or it causes side effects that negate their usefulness then a Pharmacist can contact your Dr/Consultant and advise them to remove the problem medication ! If you have been on any Opioid medication long term them you must come off of them Gradually!

Personally I would tell the Pharmacist you are going to a different Pharmacy and you are going or have reported them to the British Medical Council or whatever organisation oversees Pharmacist's! I am personally on Oramorph, Zomorph, Gabbapentin,amongst other medications, I only know the above due to having Problems with a well known High street Pharmacy that kept asking me to attend a review! I am Agoraphobic so they spoke to me on the phone then every three to four months they would "Invite"! Me for another review !? My Consultant called them and in no uncertain terms told them that "If Mr ********" needs a medication review then he would see to it! " He then advised me to change Pharmacy ! certain Pharmacist's do unnecessary Reviews as they are Paid £28 or something near that per review ! You only need one per year, beware of Certain High street Pharmacist's I can't name names but think of Footwear ! As they are the worst and are already being looked at due to these so called Reviews! Hope you work it out !! All the best Dell

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johnadams
johnadams
in reply to Delzek

that isn't true

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johnadams
johnadams
in reply to johnadams

Pharmacists are often employed by GP's, they can be independent prescribers and issue the prescription. It isn't a case of going to a different pharmacy. They work in the GP surgery

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johnadams
johnadams
in reply to johnadams

British Medical council? They don't even regulate doctors, try the general pharmaceutical council.

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Delzek
Delzek
in reply to johnadams

I don't know where you are from but it doesn't work like that here! I have a choice of any pharmacy I wish to use

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Delzek
Delzek
in reply to johnadams

???what is not true???? Can you be more specific

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blueeyes5262

This is why I'm afraid to take my meds on a regular basis, because these idiots can scoop snag our meds and we have to suffer with drawl

There are mean people prescribing these drugs that have no feelings for people in withdrawal!

Then we'll wind up in the streets looking for relief and from there it's jail!

We should advocate for a system that has to leave us alone,as long as we're following the rules!

But they won't and it's getting worse!

People are dieing because some Dr, took the medicine this person has relyed on for years a and they can't get any relief!

TRUST NOONE!!!

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Konagirl60

The streets will kill you. Meds bought outside of a prescription are tainted with laced carfentanyl. People are dropping dead. They haven’t OD’d. They been kicked to the curb without any or ineffective prescribed pain meds.

You ARE dependent on your meds and that’s alright. Just like a diabetic is dependent on insulin you’re dependent on your meds to have some quality of life. You’re not getting high.... you need relief from body/ physical pain! I’m sick of the way people with intractable body pain are made to seem psychosomatic. 😡

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Ardraven
Ardraven
in reply to Konagirl60

Right on! Your point about it being like patients being dependent on treatments for other conditions is exactly how I feel but you put it better than I would have 😎

I know exactly what you mean about being made to seem psychosomatic.

I also hate being constantly scrutinised to ensure that I'm not a junkie trying to con drugs out of the doctor. Worse is the way it's getting harder and harder for new chronic pain patients to get any strong pain relief at all.

At the risk of being controversial, surely it would be better to have a slightly increased chance of the minority of people who want to abuse the meds managing to divert some and suffer the harm caused by their life choices than the current increased difficulty in getting relief from pain suffered by no fault of their own by patients who have debilitating and demoralising long term conditions that could leave them in agony.

Anyway thank you for your post it gave me a boost to know someone else shares these opinions with me 😎

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Konagirl60
Konagirl60
in reply to Ardraven

Thanks for understanding. It’s very disturbing.

I was dismissed, slandered, abused physically, emotionally and spiritually, purposely misdiagnosed and left to suffer acute 24/7 intractable pain for 3.5 years. I almost died.

Ten doctors committed fraud. I needed surgery and no doctor would listen to me and they ignored an American specialist’s diagnosis and treatment plan. I was truly neglected and I had incompetent care. I’ve no clue what these doctors got paid for?

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guitara69

Ya they’re trying to get everyone off opioids and yanking them off. I can testify that quick going off is not a good idea they’re strong mind altering drugs I was there for 7 months 4 years ago. You have to ween very slowly as your minds going to bend for awhile I was very confused anxious and nauseous sick. It took me a long time to adjust to thinking again but it was good after it was done. I keep some around for those days I have spine issues. I was fortunate to have several nerve blocks that did wonders and went with Tylenol 3. Try to keep some as you ween for those days. Someone said hash oil is very helpful.

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Trille

Dear Keaney, this is outrageous! I cannot understand how the pharmacist can claim authority to withhold essential medication from a patient. When your GP has prescribed the meds, that's because you need them, goddammit.

Could you phone your GP? Does s/he have phone appointment times? Or you could maybe ask for an emergency appointment with your GP. It *is* an emergency, and you've been treated in the most despicable way.

Let us know how it goes, please.

And remember: you are not alone! Anna

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Keaney

This is what my family feel is well, we think she went back and read.my notes again and because I was so upset by the end of the first call, I will most definable will make a complaint, my doctor is the practice head and a pain specialist, maybe I’m just too suspicious of people,

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Keaney

No she is a pharmacy practitioner and works within the go surgery

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Keaney

That is exactly why it took me so long to agree to taking them regularly

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Keaney

I had no idea you could hurt your back so bad and be in such pain, worse than childbirth lol,. I had to give up a job I’d always loved, and always wanted it for so long after only 3 years I could no longer work, having to give it all up was devastating to me. It’s just bin a nightmare, I’m sure other people have had to change their whole life, I have 5 children and I missed so much

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Konagirl60
Konagirl60
in reply to Keaney

I lost everything; my 31 year career and job, my life savings and my home.

I understand how you feel. It’s so unfair.

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Keaney

I don’t want to decrease my meds, if anything I need to up the dose, the ones I am on don’t give me anything near the relief they used to anymore

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Keaney

I will of course update, you all so much for your advice and time, it’s nice no know someone cares

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barbleblanc

Go to emergency, declare how f up you are. That you are going through widthdrawl and are going mad. That you want to speak with a psychiatrist. Ask the doctor if you could be hospitalized to regulate your meds. Sometimes a little freak out goes a long way good luck

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Delzek

The Pharmacist can only "Advise " the gp contrary to what has been stated above! A Pharmacist is there to dispense medication not decide who can and cannot have a medication! I have spoken to my own pharmacist re opioids and it's not the Pharmacist or the doctor trying to stop prescriptions it's a government decision ! Which you can fight! I did !so sorry to say this but I think a Pharmacist is on here trying to muddy the waters by lying to us.

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PollyWJ

Hi Guys,

I’ve also been told I need to give up Oramorph. The difference being my Doctor gave me a plan to follow. I was on 600ml of Oramorph a month, taking 10ml doses when required. Am also on Zomorph but nothing has been mentioned regarding that. Instead of taking 10ml I reduced it to 5ml and if needed took the other 5ml, if not great.

I am dependent on a lot of medication like many of us on here and was eager to get off some. I’ve reduced it to 400ml a month but that is the very least I can cope with. We have 2 Pharmacists; the one from the high street who dispenses (and has no say whatsoever with my medication) and another Pharmacist in our doctors surgery who can discuss and suggest to both me and my doctor, but only my doctor can take action.

This is exactly how it works Apparently there has been a lot of misuse and deaths in America because of Opiod addiction, which is why our Government followed suit.

This all seems hunkydory but like some others I ve been made to feel like s@*# (with you on that one Ardraven)

For having to justify meds that they prescribed in the first place.

You look after yourself first Keaney so your able to carry on your wonderful and amazing caring role x

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Keaney

The pharmacist is a pharmacy practitioner, so she can prescribe and dispense, I’ve got to see her today, I don’t think I’ve been nervous about going to the surgery before. I have spoken to a different pharmacy practitioner, she is a pain specialist and is about 1 of about 4 pharmacists in the uk who specialises in pain, she was also the first to become a practitioner in the south, she has told me the pharmacist at my doctors surgery is talking rubbish, there is no point at all in reducing the ms Continus until I have stopped taking oramorph, she also said the dose I am on is not a big dose and that, yes, the gov is trying to reduce pain med use in the UK but I would not be a priority and says she thinks this is happening because I have stayed on the same dose for so long that the meds I am on wouldn’t be working in the way it was, as I would’ve built up a tolerance to that dose, & maybe this is y she wants me off pain meds, so wish me luck cos I am going to see her at 9 and I will of course update you when I get back.

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