Pain Medication . Suffer of Lupus and APS as well as MCTD

[Paulie303]

Hi I was just wondering if anyone had a letter like the one below . I am feeling really anxious that I am going to be taken off my medication . I suffer from pain daily . My medication is the only thing that gets me through the day . I am going on Monday and don't really know what to say or do x

[Freckle1000]

The exact same thing is happening in Australia where I'm from. Here - patients and Doctors are stating the obvious - that patients need these drugs - and the problems involved with this policy is regularly making the news with individual stories.

Here it seems (?) there are one or two GPs per practice who are willing to ignore these kinds of letters and break the rules - and chronic pain patients are being referred to them. There's a lot of arguing going on between GPs and officialdom - and were all waiting to see who wins.

Its possible the same thing will play out there.

Hold on to you're hats - it might not be pretty - just prove you're not vaulnerable to overdose, addicted - (or selling these drugs) and - but be sure advocate for you're legitimate pain needs.

Hopefully you're GP will find a solution.

Good Luck.

[Hidden]

Don’t worry, I was told in my local chemist that I needed an appointment to review my meds, you just have to go to your surgery and tell your GP how much benefit you get from taking them and they’ll keep giving you the prescriptions. They are trying to cut costs 😉 When you get the appointment say it is to review your meds (they give extra time)

[Jmiller623]

I don’t know where UK gets its opioids from but I suspect there’s going to be a crack down for a while. Companies are getting sued here in the US because so many people were left without drugs when docs stopped prescribing for fear of addiction/overdose. The drug was heavily marketed as non addictive by pharma companies...leaving behind a bunch of patients with pain, no opioids and a thirst for relief. This is what caused the heroin epidemic over here in the states.

I had no problem prescribing to rheumatology patients as PCP. It shouldn’t be an issue for cancer/rheum patients. Post-op patients and patients with chronic pain unspecified will be hit the hardest.

Hope this eases some worries in the rheum community. ❤️

[Paulie303 in reply to Jmiller623]

Thank you so much for your help . I don't know anyone where I live with Lupus I sometimes feel scared, lonely and a burden to my family . I hate being like this . I work full time as a mental health nurse and try so hard to be well . My body has different ideas x

[happytulip]

It's partly because of over prescribing in the USA which has lead to a prescription drug crisis.

In the UK if you break your wrist you go to A&E and might get sent home with a cast, fracture clinic follow up and paracetamol and a small amount of codiene. Yet my pals in the USA, or so I am told from a friend got given Oxycidone! One of the strongest opioids. Fentynl is also pretty widely available too. Apologies to our friends in the US but this is coming from UK nurses who have gone to work out in the USA telling me this stuff. These drugs are highly addictive and can lead to addiction and death, and that is exactly what has happened.

Pregablin has recently been upgraded to a class C drug so all patients on it will get a review.

I have lupus and chronic pain. I take MST, pregablin, diazepam and oromorph. I used to work in medicine so I know what is same to have if I need extra and have a good rapport with my GP. I told him that while I appreciate patient safety is paramount, I have an inflammatory condition that causes me to have significant pain. If I take the pain relief I can be ambulatory, mobile and have a life. This reduces the risks that come with immobility which is increased pain, osteoporosis, depression, weight gain, diabetes etc.

I would say that if you have a reasonable GP then you have nothing to worry about. It's a big standard letter that would have been sent to everyone on these meds. Us lupus patients are quite unique, just put a good case forward to your GP about the pros and cons of being on the meds and I am sure you will be fine. And if you have difficulty, say directly to them, "I know you have to meet your quota to reduce the amount of people on these prescription painkillers, but please treat me as a person and not a static. You can't see or feel my pain." That will make them think.

[Paulie303 in reply to happytulip]

Thank you so much for your advice and guidance. I know I am panicking and winding my self up. I work full time as a mental health nurse and love my job . My pain meds just about get me through the day with the pain I suffer from . This past year has been the best since I was diagnosed when I was 18 I am 39 now . I have my pain controllable, I still struggle but can manage . If I didn't have pain meds I'd be in bed the majority of the time and need my children to help me more than they already do . I was so upset last night my youngest who is 13 said " Mum you might have to go into care when you are older as you are getting worse " he said he was only joking when I started crying..... it's made me think maybe I am a burden x