The Medicine - Pain Meds and Dealing with Doctors

The Medicine – Patients with autoimmune disease often are not treated well by Doctors and Pharmacists when we ask for or receive prescription pain medicine.  What has been your experience?   Share the good, bad and ugly side of your experience.

It's September and RD (Rheumatoid Disease AKA Rheumatoid Arthritis) Blog Week is on as of today. Once again, it's the spur to get me writing again... I'll have to write a post at some point to catch up, as I've been MIA for almost a year from the blog...and it's BEEN a year. However, that can come after I get through this week - assuming I manage to stay on track and post every day. Fingers crossed - as far as they will anyway.

So, the topic... Medicine. This isn't one of the topics I'd have chosen, but I'll have a go anyway...

My biggest issue with the RA meds and analgesia has been having to take the bloody things in the first place. Like many people, I really don't like taking drugs - one of the reasons recreational drugs have never appealed to me, which is probably a good thing! So being in a situation where I have a whole raft of medications that I have no choice about taking is not easy.

I have to say though, unlike many, pain meds, by and large, haven't been a huge issue for me - getting them, and/or using them.

For many, many years, my RA was very mild and slow moving - the story of my diagnosis and progression can be found in THIS POST. I had a drug called Capadex (a combination of paracetamol and a small dose opioid) on hand for when I flared - I didn't need daily pain meds. It wasn't until the wheels fell off in 2013 (see the linked post) that I had to change that. 

In Australia, for the most part, GPs (general practitioners, or PCP, in American terminology) tend to manage a lot of the prescribing and monitoring of pain meds for chronic illness - they're the doctors we see most frequently, they're the ones who can, if required, bulk bill us so that we have no gap to pay, and they're the ones who know us best as people. There are pain specialists - it's a growing trend here - but not everyone sees one. I have seen them, over the years, at various times, and if necessary, I'd see one again, but as long as I have a good relationship with a GP who is happy to prescribe my analgesia, NOT having to add yet another specialist doctor and the associated fees and extra appointments is a GOOD thing! 

My then GP, when I saw her about the increased disease activity and pain, put me straight onto slow release Tramadol, AND informed me that it was time for me to reconnect with a rheumatologist - which was non-negotiable. 

Typically, here in Australia, rheumies don't prescribe pain meds. Now and again, mine did, if I'd been running short, and he'd been the doctor I saw first, to save me from having to make another appointment and run around more. But it's been a courtesy on his part, rather than the norm. My current one - our interstate move meant a total change of medical team - itself, a mammoth task - has never prescribed any pain meds.

My current GP is a specialist GP with an interest and research background in chronic illness, so he's much better versed in pain management for chronic illness than a lot of general practitioners. My first visit to him - having discovered him in a local medical centre - was a script visit. I'd not, at that stage, transferred my medical files from my Sydney GP, because I didn't know who I'd be seeing regularly and didn't want to have to doctor shop and transfer them for every visit. his profile on the clinic website was encouraging. So I fronted up to a brand new doctor, needing a prescription for Tramadol, a scheduled drug. My usual script was an authority script that got me three packs at a time (twenty tablets per pack) with five repeat scripts. I had some remaining 50mg scripts, but none for the 100mg tablets. So, the introductory conversation was had...he was clearly in a bit of a pickle, because it was the first time we'd met. I COULD have been a drug seeker, on a drug shopping expedition. We don't have the huge issues here in Australia about scheduled drugs that's happening in America, but there are concerns... In the end, he said that it was obvious that I was very knowledgeable about my disease and very clear about my medication history, so he rang and got me a script for the three packs, but NO repeats. He wouldn't prescribe the Diazepam I also needed without having my files. So, I had to make a quick decision based on that single visit about whether or not he felt right for me, and get them moved here.

He's been very good. There have been two visits where I've had to insist on a particular course of action...one time it didn't go my way. But following on from a rheumatologist visit and communication between the two of them the next week, that particular issue was resolved. The second time, he had a med student in the room and clearly didn't want to have to argue with me in front of the student, and gave me the script for antibiotics I needed then - and was visibly relieved the following week when I turned up for a second batch, still VERY sick, that he had...and conceded that I'd known exactly what I needed at the time.

My disease is just barely controlled on my current protocol. A year ago, I was regularly at the allowable limits of the Tramadol dosage, and needing Endone - immediate release Oxycodone - to top up through the night, particularly. When I went to see him to discuss this, and what to do about pain meds, he just reached for his prescription pad, and wrote a script for a Fentanyl patch. So now I have one that releases 12mg/hour that I change every three days. It's an authority script - meaning he has to call the authorities to get me two boxes on the one script, which lasts me a month, primarily so I don't have to be going in to see him every two weeks. I still have the tramadol, but at a much lower dose, and on the good days, that means just a 50mg tablet during the day, and 100mg at night. Currently, it's 100mg for both doses - we're just through the Jewish High Holy Days and I've been singing in the synagogue choir, with attendant rehearsals, and that's taken a huge toll on my body. 

I saw him last week for my regular appointment that usually opens with him asking what he can do for me, and I just say, "I need drugs please!" - and he laughs and picks up the phone. I've been on the Fentanyl patch for a year now, so under Australian law with scheduled drugs, he now has to apply for a permit to continue to prescribe it for me. He continues to prescribe the Tramadol and Endone, and Diazepam (the latter is a long term pain management strategy to keep on top of the muscle spasms I get due to over and inappropriate use of muscles to compensate for dodgy joints, which add a level of pain that becomes unbearable. A low dose of Diazepam a couple of times a week keeps that from getting out of control and lowers the necessary dose of analgesia.

He knows I don't have an addictive personality, and that I'm not addicted to any of my pain meds. I'm highly dependent on them for 'normal' function - as normal as my function actually is... But I'm not addicted. I don't get high. Opioids used correctly for chronic pain don't make you high. They just give relief and allow people like me to get out of bed and actually function.

He's the GP I wish ALL chronic pain patients could have.