Rheumatoid Arthritis - New Pain Management Plan.

Many thanks to everyone who's read my last post and left comments. As those of you with chronic illness know, this can be a weirdly isolated life, when the disease is severe and interferes with our ability to hold down a regular job, and be out and about the way most healthy people are. So the social contact that comes via the Internet can make a very big difference. 

I mentioned in that post that my pain levels had reached unmanageable levels. Slow release Tramadol was the basis of my pain management - with Endone (an immediate release opioid) as required for breakthrough pain. The maximum dose for the Tramadol within a 24 hour period is 400mg. I had reached a point where I was taking 150mg in the mornings, and 200mg for the evening dose, so I was pushing that. And it wasn't cutting it. Particularly as I neared the end of the four week infusion cycle. Plus, I was SO fogged up with all the Tramadol that I wasn't functioning well, cognitively. As well as discussing a possible change of biologic drugs with my rheumatologist, we did talk about pain management, but he doesn't prescribe my pain meds - so it meant an appointment with my GP. 

One of the things about the interstate move a year ago was facing the thought of finding a new medical team - and breaking them in. I'm not a passive patient. I'm compliant, once a plan has been nutted out that I'm comfortable with, but I don't just sit and let the doctors work it all out without taking my feelings and contributions into account. I had a brilliant team, between my GP, rheumatologist and physiotherapist, in Sydney. 

Thankfully, my Sydney rheumatologist had someone in mind for me, an old colleague and personal friend. He knew I needed another specialist who would work collaboratively with me and, most importantly listen to me and REALLY hear me...because in the past, that's been an issue. It nearly always is a big issue when you don't present medically within obvious and traditionally recognised parameters. I am sero-negative - ie, I don't have, have never had, a positive rheumatoid factor in my blood. Around 20-30% of people with rheumatoid arthritis are seo-negative. SOme of the more traditionally recognised features of RA don't tend to be as overt with sero-neg RA - such as swelling. I DO swell, but I rarely have the big balloon-like swelling that the doctors expect to see, so unless you know my body well, it's unlikely you'll notice the times I am swelling. My Sydney rheumatologist learned what to look for. My new guy here is learning too - very fast. He's taken good time during consults to check me out very thoroughly, and I'd say, apart from the letter that I had with the referral, my Sydney guy had called him and had had a chat at some point before we met.

The GP was the next person to find. My Sydney GP didn't have anyone she could refer me to here, so I had to play a bit of roulette - that's certainly what it felt like. My new GP is proving to have been a very good discovery. So, I headed in last week to discuss the pain management issue. We went over where I was at with pain meds and NSAIDs. He's stressed the importance of keeping the dose of the latter up - so, that's 100mg morning and night of Celebrex, and Losec in the mornings to help protect my stomach, as they can cause gastric ulcers. Next was the analgesia. 

Tramadol is an opioid like drug. It's scheduled, so to get a prescription for more than twenty tablets at a time, AND repeats, requires a phone call to the PBS - Prescription Benefits Scheme - to get permission to make the bigger prescription - which saves on doctor's visits, as it's a drug you almost always have to get prescriptions of by actually seeing your doctor, which means another charge for the visit, and so on... Typically, I've been maintaining prescriptions for the 100mg and 50mg tablets, with authority scrips for three boxes at a time with five repeats.
 
We batted a number of different alternative options around. The one point of agreement was that I was going to have to have an opioid as the base medication. While there has been huge noise in the media about opioid abuse and there are plans here, I believe, to start restricting the prescribing of them, as is already the case in the USA, thankfully, my GP is a chronic illness specialist GP. He understands chronic pain, and the difference between chronic pain that is chronic illness based and that which results from an injury. He has no issue with them being used - appropriately - to manage chronic pain that's the result of a disease like RA. For me, at this point, it was a question of the mode of delivery. Ultimately, after some discussion, I've ended up with a transdermal patch that I replace every three days. Each patch delivers 12mg of Fentanyl per hour over 72 hours. With that, he prescribed 50mg of Tramadol in the mornings and 100mg at night. And Endone for breakthrough if I flare.

It's been a week since that appointment. I am feeling noticeably better. The pain IS more doable. Overall, the 'normal' pain is less. I'm more aware of the degree of stiffness I'm experiencing - that's particularly noticeable in my hands - typing this post is taking me about twice as long as it should due to all the typos I need to correct when fingers land on the wrong keys! If I sit in one position for too long, I have real difficulties getting up again. I'm excruciatingly stiff in the mornings - all this stiffness was being masked by the amount of pain I was in and being lumped in with it... That Tai Chi I'm doing is going to HAVE to become a regular morning thing - once I'm mobile enough in the mornings to warm up and work my way through the Beijing 12. It will, I hope, then set me up for the rest of the day. I'm much less fogged, and have found I have a bit more energy - that was being sapped by the amount of pain I was in previously. My head is clearer for not being fogged up by the large amount of Tramadol I was on.

Time will tell, of course. I'm now starting week four of the infusion cycle, with my next one due on Tuesday next week - this is the week when I can anticipate some deterioration. So it'll be interesting to see how that plays out now. Hopefully, it will be a bit better than it has been. I'm sleeping better too, in between waking due to pressure pain in my hips and shoulders that wake me and require some major re-positioning before I can drop off again. 

I'll be back at the GP next week to review this first fortnight with the patches, and get the next prescription if he decides the improvement has been good enough to settle with this as the plan... So, I'll report back then, if not before!

Poppies, in honour of my new analgesia - photo by me.

Rheumatoid Arthritis - when the penny drops that it's forever

I've been MIA for a while now, I know, and for regular readers, my apologies. It's been a tough six months or so. I've had increasing pain, therefore increasing analgesia accompanied by increasing brain fog. The Orencia infusions have been giving me a couple of good-ish weeks out of the four from infusion to infusion, and I'm well aware that that's not good enough, but it's also been a busy and pressured time with a number of other things going on.

The emotional impact has knocked me for a six. Those of you who follow The Original Dragon Mother on Facebook - link HERE - will have been watching daily photos going up from Fat Mum Slim's Photo a Day challenge, as I chose to drop them on that page as well as within the FB page for the group. And not much else. Certainly not blog posts from me. As I've written previously, I started that photo challenge in January this year, partly to try and kick start my art practice again - in my mind, I had optimistic visions taking a photo each day to post and doing a drawing each day too. That hasn't happened. The photos, yes - the drawings, no. I've been writing for work as the assignments come in, but nothing else, really. Deadlines for competitions have come and gone, and ideas to pitch have sat in the slush pile with nothing happening to them. Eventually, I stopped and looked at all of that, and recognised all the signs of depression, and then had to come to grips with what was going on. 

Rheumatoid arthritis, like all autoimmune diseases, is chronic, incurable, degenerative and painful. For twenty years after my initial diagnosis, I got off extremely lightly. Flares aside - they were nasty and debilitating - it was mild, and manageable. When the wheels fell off in 2013, it all happened very fast. Before I knew what had hit me, I was in hospital barely able to walk, hot on the heels of having pretty much lost July of that year to Methotrexate and the brain fog that was more like a complete brain wipe out, because I really don't have memories of that month at all. There were so many doctors, so many tests, so many drugs, and then more drugs, and reactions and allergies, then different drugs, constant testing and monitoring. It's a really BUSY thing, having a chronic illness. Meantime, there were other pressures - stuff with Dragon Dad's business, family stuff, our interstate move, the inevitable isolation that happens at the beginning of establishing yourself in a new place, new doctors, etc, etc... BUSY. Then things started to settle. Routines got established. I acquired friends on the ground that I could meet up with and hang with. Dragon Dad put the business on hold and got a job in real estate - something he's always wanted to do - and started being gone a lot.

And I was a bit of a mess, to be brutally honest. Even he doesn't know how bad its been - that would be an added pressure he just doesn't need. The Photo a Day challenge became, quite often, the thing that got me out of bed. Sitting on FB chatting to people in the group via comment threads on photos became my main socialisation. That, the cafe down the road, and meetups with a few people I see regularly. Until I realised I had to come to grips with it all or I was going to get myself stuck in that safe little rut - and that's not a healthy option. 

The crux of it, in simple terms, is that I'm NEVER GOING TO GET BETTER. Looking at those words is awful. Living it is worse. How I am right now is, possibly, the best I'll ever be looking ahead in time. I don't know. I'm looking at a change in biologics by the end of the year, if not sooner. I've just rejigged my pain management drugs and am getting acquainted with my first opioid as the base medication, in the form of a patch on my arm. A new bio may work better and change everything. It may not. What it won't do - what it can't do - is make it go away. Nothing can do that until the scientists who are doing the research figure out a way to cure the disease. 

There ARE worse things. I do know that. And there are people I know - good friends - who also have autoimmune diseases, some of them have multiple diseases, who are far sicker. Are in more pain. Have much bleaker outlooks. And I feel for them, and try to support them as much as it's possible for someone who's geographically distant in some cases, but at best, just a pair of ears. Here's the thing though - there is a lot of 'competition' about degrees of illness and disability in the online world of chronic illness. It generates, at times, some very bad behaviour online. That disgusts me. We all have enough to deal with on a daily basis without that crap. This isn't about me trying to make a case for how sick I am. This is me trying to come to grips with, and explain, what the sense of confronting a long term, incurable disease is like. Because no matter how severe or mild it may be - and I've now had the dubious privilege of experiencing a wide rage of those - it's ALWAYS going to be there. 

That's what's had me hit the wall over these last few months. Having the absolute reality of that really sink in. I am ill. Ill enough to require specialist care for the rest of my life, powerful scheduled drugs to control the disease, and to have to take each day as it comes, knowing that some days I simply won't be able to manage the things I had planned and will have to cancel. I will always be ill. It's hard. It's confronting. It's pretty damned scary. I'm in pain. I can't remember the last time I slept through the night so I'm always tired. My patience - never my most outstanding personal characteristic - is in very short supply. I just don't have the energy to be patient with so much of what life can throw up. Nor do I even have the energy to lose my temper when things really jam themselves up my nose. That pisses me off - that catharsis of having a really good big temper tantrum (regardless of the grovelling afterwards that might be necessary) is lost to me because I just can't afford to waste emotional and physical energy like that. 

I don't know if I've made a lot of sense in this post. I'm still not really OK. I'm still really struggling with this. I still haven't talked to Dragon Dad about it because he's SO preoccupied with the pressures of his new job and the targets he needs to meet that his ability to sit through me fumbling around trying to make myself clear is just not there right now.  It's also something that will worry him and add to his stress, which is already considerable. So I'm telling anyone who reads this instead! Because I have to say it all in some way before I implode, because until I own it, I can't work my way through it. So here it is, in all its messy glory... Watch this space. Now I've opened the dam gates, there will probably be more to come!
 
To wrap up, here's one of my recent photos - because it's far nicer than a photo of my arm with a cannula in it, or a photo of my current meds, or anything else RA related... It's a sunrise taken from our back yard one morning a few weeks ago - straight off the phone camera too - no editing. It really was that intense and beautiful!