Rheumatoid Arthritis - when everyone else knows better...

Canadian blogger, Lene Andersen posted a link to one of her #RABlogWeek posts on Facebook this morning - the first of the daily topics, Starting Stories (read Lene's post and others from the many people who took part in the event HERE) - with the suggestion that people continue the conversation with what they could contribute about starting over with chronic illness. She and I had both written about something other than our original diagnoses in our posts for the event, as both of us had dealt those elsewhere at other times - you can read mine HERE, and Lene's HERE. In mine, I'd written about the huge upheaval my RA caused in my life when, after 20 years of mild disease, it suddenly became aggressive, requiring much more intense treatment very quickly to regain control of the disease. Lene wrote about the mental and emotional shifts she consciously made after starting biologic drugs, which, she says, gave her back her life. 

It's those mental and emotional shifts and growths that are so very necessary when there are big changes that happen in our lives. Living with a chronic illness means there can be a permanent level of uncertainty and worry about the future, as well as the challenges of everyday life. That in itself can be quite tiring, on top of the pain and and general sense of not being well, and the fatigue that is just part of a disease like rheumatoid arthritis (RA). Then there can also be depression, frustration and loneliness to deal with as well. It's a lot for anyone to have on their plate, and can all get quite overwhelming at times. So, how to deal with all that?

For myself, it's come down to one basic thing that overrides all others: learning to stop catering so much to other people. As a young girl and adult woman, my conditioning has been very much about care taking other people, making sure they're OK, and putting them ahead of myself in order to achieve that. Now, there are times when that is entirely valid - attending to a small child, or a sick person, for instance - but those examples usually have an end date to them. The general expectation that women will always put others ahead of them, however, doesn't always feel like it will come to an end. Couple that sense of what can be unrealistic expectations from others when someone is chronically ill, and it can take on an entirely different aspect. 

Illness can make many people uncomfortable - being around it, that is. It can prompt - for the sick person - a lot of unwelcome suggestions and the other person goes into fixit mode, because if the illness can be fixed, it'll go away, and everything will be 'normal' again, right? For those who are around the sick person regularly - family and close friends - that can be incredibly frustrating. They WANT us to be well again, for our own sake, as well as their own. The trouble with that, is that RA is incurable. The treatments that currently exist are aimed at slowing down the rate of the disease, and hopefully preventing damage and disability. They're not uniformly successful. Everyone's RA is different, as are responses to the drugs. The information that's out in the public domain varies too, depending on the source, and there are far too many people peddling new-age 'cures' that have nothing to do with good science or medical practice and altogether too much to do with making money from vulnerable people. 

Consider this exchange I had on Facebook chat yesterday morning while in the middle of receiving my current biologic drug via infusion (edited to focus on the pertinent parts of the exchange):

"How are you? I hope you are flare free, unless you are wearing flares."

"LOL! Just having the infusion of my biologic drug."

"Biologic drug?"

"Yep. Once a month. Whole class of drugs that were created over the last 15 years or so to treat autoimmune diseases. It targets the T-cells and interferes with the autoimmune activity - which is in constant overdrive. Slows the progression of the disease."

"Hope the drugs are working and not doing you harm."

"Minimal side effects; and working reasonably well. More harm to be had by letting the disease run rampant with no checks..."

"Long term effects. Of the drugs."

"Long term effect of the drugs is controlled disease. If unchecked, it can damage major organs as well as joints. Without them I risk permanent damage and disability."

"OK. Take care."

On the surface, the conversation sounds as if he's just concerned for my wellbeing. The wider context is that he's given to posting stuff by David Avocado Wolf, a well known figure on Facebook, who frequently posts memes and articles supporting what I call woo (unsubstantiated, non medical treatments and supplements that purport to cure people of any number of diseases) as well as anti-vaccination material, and conspiracy theories about 'Big Pharma'. We've had conversations prior to this one about the drugs I take, and my sense is that he largely disagrees with the choices I've made medically. Having said that, he's not knowledgeable about either the disease or the medications used to treat it. 

There was a time I'd have edged my way out of the exchange, not taken him on, and opted to not put anything forward that was remotely contentious. And I'd have gone away cranky and upset with myself for not standing up for myself. Those days are over. It's MY life, MY disease, MY choice, MY treatment, and MY business. I don't have to mollify others, or justify my choices. I don't have to do it to make them more comfortable, or put myself in a 'better' light with them. There's no requirement of me that I build them up by ascribing to something they say that I don't agree with, just to make them feel good. This friend is not in a great space at present, having recently lost his father. I was aware of that, and in the bits of the conversation that I didn't include here, I checked in on how he was travelling. Being aware of his fragile state, I was careful - for my own sake as much as his - to be polite, but I wasn't going to back down either. I feel that his last comment - which was the end of the exchange - is telling. There's no real acceptance of what I was saying about the drugs in question. That's a back off... 

As for many people, these drugs have changed my life. Even the treatment methods with DMARDs (Disease Modifying Anti-Rheumatic Drugs) have changed since I was first diagnosed. Back then, they were administered one at a time. If one wasn't effective, it was stopped and a different one started. Now, if one isn't particularly effective, it is maintained and another one ADDED. It's been found they work better in combination. That was the case for me - I take two DMARDs, one of which I'd taken twenty-odd years ago to no avail. In combination with the second one, it gave me, on a good day, a 50% improvement on where I'd landed when the disease went berserk. That wasn't enough though, and required a high dose of oral prednisone and periodic booster infusions of prednisone to give me more mobility and less pain - a situation that couldn't be maintained long term. Adding the biologic drugs has made all the difference. I'm still not 100%. I may never be. But I'm so much better. 

The thing is, even during the mild period of my illness, when I didn't need such hard core medication to function relatively normal, the disease was progressing. The MRIs of my hands ordered by my rheumatologist showed synovitis (inflammation of the synovial membranes in my finger joints) and erosion of bones in my hands - the latter being permanent damage. Bone eroded away by disease activity. That happened during that largely unmedicated twenty years. I hate to thing how much faster it could happen if I were unmedicated now that the disease is much more aggressive. The image below (not the image from my MRI) shows an example of the damage that can happen with RA.

For me to move forward and find a way to live with this disease and all its daily challenges, I need to focus on myself in a quite new way. I need to be able to feel confident in the treatment choices I make in conjunction with my medical team. I need to know that I'm making the best possible choices based on the best information that can be sourced. And I need, most of all, to have those choices respected. I wasn't disrespectful of my friend's point of view. He's perfectly entitled to hold it. However, that has to be reciprocal. I'm not going to cater to people who, with the best of intentions, project their ideas and feelings about treatments on me, when they really don't know what they're talking about. Instead, they will hear from me exactly why I make the choices I do, and what the consequences would be otherwise - respectfully. 

#RABlog Week 2016: Post No.4

Daily prompt:

The pain of pain meds: Pain medication prescriptions are hard to obtain and scary to use. What horror stories do you have because of new laws? Maybe you have been treated badly at the pharmacy or by family members?

I need to start this post with a disclaimer. While I am aware of new legislation and the growing issues for chronic pain patients in North America in obtaining pain meds, opioids in particular, as yet there has not been legislation passed like that in Australia. However, the climate is definitely changing here and those of us who are keeping watch are concerned that the same misinformation and lack of being heard is going to influence the powers that be to move on creating similar legislation. 

As things stand in Australia, there is increasing pressure on rheumatologists and GPs to refer chronic pain patients to pain specialists - the newest medical speciality on the block. I have to say, given my experience of pain specialists to date, they're not my favourite people. Those I've encountered appear to have a number of preset ideas; one, that chronic pain can't be successfully treated with opioid drugs, and two, that all chronic pain is equal. Rather than try and unpack both of those myself, I'll refer you to an excellent post written recently by Arthritic Chick, as she nails it completely. So, go read that HERE, then come back for the rest of my post... 

OK, so, my pain story.  

For many many years, I managed on NSAIDs and the prescription painkiller Capadex, one of two drugs in Australia and New Zealand that were a combination of Dextropropoxyphene (an opioid) and low dose Paracetamol. They were withdrawn in 2010 due to concerns about inappropriate use, particularly in combination with alcohol. When everything started to ramp up with my RA, it was still possible to obtain Capadex, but it was no longer sufficient to manage my increasing pain, and when I saw my GP, she prescribed slow release Tramadol instead, while writing me a referral to a rheumatologist. 

That worked for a while, but as the disease spun out of control, I was in more and more pain, on top of my decreasing mobility. By the time I was admitted, I was barely walking, and pretty desperate. Due to chronic bed shortages in Sydney at the time, my rheumatologist said to go to Emergency as I would eventually get admitted when a medical bed became available - the only way at the time, as we'd waited nearly three weeks for a bed at that stage. That wait in Emergency will be etched on my brain forever, I think. It was horrendous. With the triage process, I rated fairly low on the priority list. It took hours before I was finally ushered into a cubical, where, thankfully, a dose of Oxycodone was administered, and for the first time in many weeks, I experienced some relief. They moved me into an interim space for overnight stays in Emergency and Dragon Dad headed home. I remember waking sometime during the night, again in awful pain, and again, they brought me Oxycodone, which allowed me to go back to sleep, until very early in the morning, when I was moved to a ward. 

My doctor had admitted me for a high dose Prednisone burst via infusion, to reboot my system and knock the runaway inflammation on the head, but decided to take full advantage of me being an in-patient to re-run ALL the basic tests. They started the next day, and with Murphy's Law operating on hyperdrive, every single bloody test showed up something that resulted in ANOTHER test being ordered to investigate that... All in all, I was in hospital for two weeks, during which time Dragon Dad had to head overseas for a business trip that couldn't be moved. A good friend came to Sydney to be there during the day, as No.1 son was working full time and could only get in at the end of the day. 

I should have expected the pain doctor who stuck his head around my curtain a couple of days into my stay, but he was a surprise. Dragon Dad happened to be there which, in the end, was a good thing. 

First, he had a good look at my chart. Then he asked if he could take a history. Fair enough. Only, it became clear very early on in the process that he was doubting both what was in my charts and the history I was giving him. "Why do you think it's RA?" he wanted to know... Uh...well, because it was diagnosed a LONG time ago, on solid evidence of the disease, and there's been no reason to question that... "But you don't have a positive Rheumatoid Factor..." No, I don't, and never have had, along with the rest of the 20% of RA patients who don't...it's a real thing, and still legitimate RA. He had a real problem with that. "I'd like to check you for Fibromyalgia. Is that all right with you?" Well, yes, it was OK. I don't have Fibro, and he was welcome to find that out for himself, since he clearly wasn't going to take it from me... So he did all the pressure tests and I failed to register any of them - because, I don't have Fibro. 

Then he changed tack. "You've been having a LOT of morphine..." Hmmm, well, here's the thing. I was admitted for out of control disease with severe pain. My then dose of Tramadol wasn't containing it, and if I asked for pain relief, what did they bring me? Oh yes, OXYCODONE... Because that's what they give you in hospital when you ask for pain relief for severe pain. They keep track of it, and within a certain time limit, they don't hand it out. They also check with the admitting doctor regularly to see that he's still OKing it. Which mine was. I wasn't asking for Oxycodone specifically. I was asking for pain relief, and that's what they brought me, along with paracetamol, which enhances the analgesic effect. 

He asked a few more questions around that, the same question reworded a few ways. And then asked the one that was dangerously close to an accusation of drug seeking, at which point the air suddenly went solid... Dragon Dad was furious. Actually, by then he was beyond furious. He'd sat through this interrogation biting his tongue, but at that point, he'd had enough, and then some. As Dragon Dad sat up straighter in his chair, I saw the doctor look at him, and clearly not liking what he saw, he excused himself very quickly and fled.  

Then, Dragon Dad let fly. It's a good thing the doctor had gone, because he was so angry. He had wanted to deck the guy - thankfully he hadn't gone that far. It was the first time he'd seen what was beginning to happen to all too many chronic pain patients.

He wasn't there the next time the pain doctor came back, again, most concerned about the Oxycodone. Asking me if I'd be prepared to try something different. Contrary to the opinion he probably eventually formed of me, I'm not non-compliant. I will ask questions, and I will challenge doctors as to why they're advocating a particular course of action, but I'm quite prepared to try it out once I've ascertained that it's reasonable. So I did all that, and took the first dose of Lyrica he gave me. A few hours later, I was aware of discomfort in my arms, and looking down I found that the insides of my forearms were bright red, hot, and numb... I called a nurse, who looked at it and was most perturbed. She paged the pain doctor - many times through the night and into the next morning, and kept checking me regularly documenting changes. The redness faded quite a bit by the time the pain doctor finally put in an appearance, but the numbness was still acute and mindful of my experience with Enbrel, I was very wary of taking another dose and said so. His response? "I've not read about a reaction like this. It's probably not the Lyrica." Except that the dose of Lyrica was the only thing that had been different in that 24 hours... So I refused another dose. 

"Well then," clearly irritated, "Lets try Gabapentin then. I'll start you on 300mg tonight, and then we can work up to the full dose." With not a little trepidation, I took the pill. Nothing happened immediately, and I eventually drifted off to sleep, only to wake up the next morning weeping copiously - and I couldn't stop. I'm not a crier, and nor do I suffer from depression, but that morning, the world was a black and nasty place, believe me. I could not stop crying, and one nurse who'd been on mornings for the last few days went off to find a Mimms to look up side effects from Gabapentin. There it was, in black and white - can cause depression. The pain doc wasn't having it, though, and insisted on a second dose. The next morning was much worse, and I knew it was the damned drug. When he came in later that morning, I was SO over it. And angry as well, by then. Then, all he could say, AGAIN, was, "This is very odd. I've never read about reactions like this to Gabapentin..." When challenged at that point, even he had to concede that in all the times he'd seen me in the hospital, I'd never been anywhere even close to a state like that. I told him I was done, and I'd really appreciate it if he took himself away and didn't come back. 

When my rheumatologist did his rounds a little bit later I asked him to park and took him through the whole of the previous three days. My arms were still numb at that point - and it would be a bit over a week before I had full sensation back. I asked him if it was possible for him to manage my pain meds, as he had up to that point, and he said, of course. And there we were. And that's how it's been - between my GP and rheumatologist ever since. 

As an interesting end note, I did see the pain doctor again, in the company of the senior pain doctor in the hospital on the day I was discharged, when one by one, all the doctors I'd seen during the two weeks came to take a last look at my chart and sign off on it. The pain doc who'd given me so much grief couldn't even look me in the eye - but his boss seemed nice. But it'll be a long time before I'll happily go see another pain specialist. 

At this stage, I'm still using Tramadol slow release for my pain, and on the whole, it's doing the job. On the good days, I can drop down to 50mg for the morning dose, and 100mg at night. Towards the end of an infusion cycle when the pain is starting to ramp up again, I might need to go up to 150mg for both doses. That's something both my GP and rheumatologist were aware of and had sanctioned. And we've added a low dose of Oxycodone for break through pain when I flare severely. 

Meeting a new GP last week when I needed a script for the 100mg tablets was interesting. He rang Medicare for a single authority script (60 tablets, based on my average daily plan of 100mg twice a day) but wouldn't ask for a script with repeats, as I have been getting from my Sydney GP. He said as he doesn't know me, he won't prescribe anything else until he has my records, and as it was, he was on the borderline with the Tramadol script, but I was clearly knowledgeable about RA and my treatment over the years, so he'd do that much. I'm still deciding if he's the GP I want to see, or whether to head over a few suburbs to the one my Sydney GP recommended for me. I might do that and test the waters there before I decide. 

It does show that there is a lot of caution around pain meds in Australia now, particularly the narcotics. All the knowledge of what works for me will be useless if we end up with laws like the ones that are being created in the US, and the fearmongering about opioids and addiction that is on the rise here won't help that. And from what I've experienced, and stories from friends, the pain doctors aren't on our side.

#RABlog Week 2016: Post No.3

Daily prompt:

Biologics can be scary: What did you think the first time you Googled your biologic medication? What advice would you give a person just diagnosed when it comes to biologic medications?

Well, I can go short and loud on this one, or longer and more involved - and possibly more considered... However, this morning, having had a biologic infusion yesterday, I'm feeling as if I have a bad hangover (without even half as much fun getting it) so to be honest, my end goal is to just keep this lucid!

I knew nothing about biologics at the time everything changed for me and I was suddenly in the midst of severe disease after coasting along with mild disease for 20 years. Even though, this time round, I had Google at my disposal, I didn't jump online to find out what treatments were available because, to be honest, at the time, I was drowning in just how fast everything was changing. I was also trying to get in to see a rheumatologist. And trying to keep working. And NOT curl up in a corner and just start screaming... 

Biologics first became available while I was still doing fine, so the news of these new drugs completely passed me by. And then, when the wheels fell off and I saw the rheumatologist, we were up against the Australian Pharmaceutical Benefits Scheme (PBS) and their qualification requirements for biologics. Unlike the US, where biologics can be prescribed first up, we have to have 'failed' DMARDs before we can even apply to get them. So I started MXT and failed that spectacularly. Had already failed Plaquenil years ago. That left me with Arava and Sulfasalazine, but I still had to take them for six months before I'd be eligible to apply for a bio.

Meanwhile, I'd found support groups online and had read discussions about biologics - and anyone who's done that has every right to feel terrified, frankly. Where drugs are concerned in support groups, I find there is a hell of a lot of fearmongering going on. And a lot of 'big pharma' conspiracy theory. And it pisses me off. It REALLY does. That is no way for someone to be exposed to these drugs for the first time. Most of us are fearful anyway - particularly if newly diagnosed, because we're facing something we're stuck with for life with no real road map about what may happen and how we'll cope. While I was - in online parlance - a 'veteran' of the disease, I've had two very different experiences with it, and the gap between them is huge. So I WAS fearful. 

Thankfully, my wonderful rheumatologist, who insists on collaborative partnership as a treatment plan, provided me with literature to read and discussed bios with me over that six months while we waited until I'd be eligible to apply. He does that with EVERY new drug. And he was there to answer questions, and give me his rationale for why he was starting with Enbrel - it's the one that's been around for the longest time, so there's oodles of literature around, and lots of patients who've been on it. That reassured me no end. He sent me off for all the TB tests and X-rays - a must before starting a biologic. They were all clear. Then he booked me in for a top up infusion of Prednisone and sent me off on a long planned holiday, telling me to forget about the bios while we were away. 

Ultimately, this was an area where he was the expert, and I had to trust him. I already knew, after the MXT disaster, that if anything went wrong, he'd be on it straight away, and that had to be enough. As it turned out, my first four weeks with Enbrel were a miracle. Within a couple of weeks I was walking 'like a normal person' - according to Dragon Dad! And the pain had dropped. I had more energy. It was amazing. Then I got the next four week's shots from the chemist and injected the first of them. The next day, I had a hot itchy spot on my leg at the injection site that really burned. I picked up an over the counter steroid cream, which sort of helped, but not really. Over the next few weeks, the reactions got bigger, so I called in and my doctor brought me in and had a look. He prescribed antihistamines and a stronger steroid cream. They still got bigger and nastier. He prescribed oral Prednisone around the day I did the shot. They still got bigger. In the end, the last one was the size of a bread and butter plate. It was raised, hard, red, hot, itchy and painful. So that was the end of Enbrel - which really sucked because even with the allergic reaction, the drug was working on my RA. 

Humira came next, another TNF blocker. That gave me monster headaches and didn't work for me. The RA started to spin out of control again, and things looked pretty bleak. So, my doctor pulled that one too, and applied for Orencia for me. It took a while before I started to feel better, and continued to do so - to the point that I'd been able to drop my Tramadol from 150mg twice a day to 50mg - huge. And then I plateaued. I was still having flares, albeit of lesser intensity and for shorter periods of time. But I'd definitely leveled out at a particular point. Then, in a discussion online I discovered that if you have Orencia via infusion, the dose is calculated by weight. I rang the helpline for Orencia Australia and had a chat with a nurse there, and weighed myself. It was the first time I've been grateful for the weight gain the drugs have caused, because based on my weight, my dose WOULD increase if I made the switch to infusions. That was just on a year ago, and I did get more benefit from the increased dose - noticeably so.

I'm starting to wonder if it's being as effective now, as I've been less well over the last few months. Mind you, there have also been significant stresses in our lives, including a big interstate move, so that may also be a factor that can't be ignored. So, I've continued on with it, and will do so until I'm due to reapply in November. My old rheumatologist had flagged Xeljanz as a possibility if the decision is made to switch again, but it'll be the new one I see then, so I'll have to wait and see where he's at on that. 

These drugs have been life changing for so many people. Particularly for the people who are able to start them in that six month 'window' that's now been found to be critical for the newly diagnosed if remission is a possibility. Unfortunately, in Australia, given the PBS regulations with bios, prescribing them within the first six months of diagnosis is pretty much impossible, because it takes at least that long to work through the DMARDs, and of course, it's totally dependent on a fast diagnosis, and that doesn't always happen. 

None of the drugs for RA are very nice. All of them have long lists of potential side effects. I have proved to be ridiculously sensitive to foreign substances in my body, and the list of drugs that are on my banned list has grown very quickly over the last four years. Even so, I don't see that as a reason to NOT try a drug. Sure, any one, or more, of those side effects could happen to me. Conversely, they might not, too! Even then, the side effects that do happen have to be balanced against the risks of what the disease is capable of doing if left unchecked. I do know that without biologics, and only on Arava and Sulfasalazine, I have about 50% functionality on a good day. A GOOD DAY. The bad days were appalling. The bios mean that I don't have those bad days very often. They do still happen because my disease is only just being controlled with the combination of drugs I'm taking, but nowhere near as often or for as long. 

As far as advice for a newbie is concerned, my first suggestion is DON'T Google the bios. My second is DON'T ask for other people's experiences online. The volume of hysteria I see online, and advice from people who have eschewed drugs, telling others to just 'eat clean' and steer clear of 'toxic poisons' (AKA RA drugs like biologics and MXT) because, cancer, and goodness knows what else, is frightening in itself, and I can't even begin to imagine the terror they could cause someone newly diagnosed. Being told that the drugs will cause worse damage is wrong, and what they don't say is that without any drugs, we run the risk of permanent damage and accompanying joint deformities and disability. It's irresponsible and creating enormous mis-information. As I said, the drugs do carry risks of side effects, but those side effects may not happen for everyone that takes the drugs, and the dangerous side effects are even more rare. And that's from someone who had a very dangerous reaction to Methotrexate. So I'm not coming from a place of not having experienced bad side effects. 

Also, there's a great resource available online from the Australian Rheumatology organisation. Follow this link and you will find lists of the main drugs used for the treatment of RA, with printable PDF files with drug details, as well as other information. It's excellent, and it's free. The PDFs are the literature my rheumatologist has always given me before I've started each new drug.  

Bottom line, if you want information about a bio, ask your doctor.

#RABlog Week 2016: Post No.2

Daily Prompt:  

Active vs Reactive patients: We usually start as naive and trusting patients, then at some point we realise we must take an active part in our own medical decisions. Tell the story of your own move to active patient, or why you are not there as yet.

Generalisation alert!!

My mother was a great one for dividing people into two groups when she was getting herself into ‘delivering a message’ mode. It used to drive me nuts, because it was always so black and white, and people generally operate in shades of grey. So, she’d have a good laugh on me for what I’m about to write.

In the RA and broader chronic illness community, most of the time, I tend to see two groups of people. The first group are those who ‘live’ their disease. The second group are those who get on and live their lives, in whatever way makes sense, with the disease. As I see it, that’s largely a mindset situation.

From what I see, the people in the first group become focused on the disease first and foremost. Everything they do revolves around that, and in a way, they ‘become’ their disease. Those are the ones I see as reactive patients. The disease dictates how they operate, they wait on what’s happening with that before they make decisions about what they do on a day to day basis, and they defer to their doctors and wait on decisions from them about diagnoses and treatments. They tend to be more passive about those decisions, and ultimately, have less broad knowledge about the disease itself.

Active patients operate quite differently. Sure, the disease is a large part of their lives, but the crucial difference is that it is a part of their lives, not the sum total. Making that work involves being a lot more active in the decision making process about treatments, and acquiring more knowledge about the disease so that there can be real partnership with treating specialists, rather than an old style doctor-patient relationship where the patient is a passive receiver of treatment.

I’m a naturally curious type, and my instinctive desire to dig into subject matter to understand it from the inside has taken me into the world of academia – as a historian, artist, and musician. I’m driven to go back to the origins of whatever topic I’m working on, and understand it from the bottom up. When I got sick, that same need to know meant that I got stuck into researching the disease, the history of different treatments, and other people’s experience with RA. In the process, I also discovered that there are altogether too many medical professionals who are extremely precious about their own knowledge, who are threatened by knowledgeable patients. While I’m not going go into that in this post, my gut feeling about it is that that’s about ego more than anything else. After all, who the hell am I, a mere patient whose academic discipline is firmly bedded in the Arts, to front up to a doctor who’s spent years training in their field and then both question and challenge what they may offer me?

Running foul of these types of practitioners has made my doctor shopping quite specific. I require doctors, from my general practitioner to my rheumatologist and all the ancillary medicos in between, to be prepared to work WITH me on my treatments, and to give me the benefit of their knowledge of the disease process while taking on my knowledge of the disease as I experience it. Fortunately, I’ve managed to find doctors that meet my requirements over the years, although that’s also meant I’ve had some less than happy experiences with doctors who don’t want to have to deal with someone like me.

Back in the day - pre combination drug therapy - when I was still in the early stages of the disease, at a time before the current trend of treating with multiple DMARDs concurrently, I’d been prescribed Plaquenil and had an adverse reaction to it. I’d then been prescribed Sulfasalazine by itself, and while I didn’t react adversely, it didn’t do anything much for me. My then rheumatologist wanted to move to the next level which, at that time, meant gold injections or Methotrexate. As someone who’s always been leery of taking meds, particularly long term meds that felt, to me, like a massive jump. I grilled my rheumatologist at that point. I’d already had to wean my baby early to start the two DMARDs and move up a level with the NSAIDs, as they were contraindicated while breastfeeding. I’d had to deal with the side effects of Plaquenil, and they were pretty nasty. My blood work was still borderline, the disease activity was relatively mild and slow moving, and he wanted to prescribe drugs with much higher toxicity and likelihood of nasty side effects. Ultimately, he agreed that it was medically difficult to justify that step at that time, and left me with the stronger NSAID and prescription painkillers to deal with the bad days.

While I know the rheumatologist found that frustrating, I didn’t see myself as being a non-compliant patient. What I saw was myself taking an active part in the decision making about what course to take at that point, based on what I was experiencing with the disease at that time. At the same time, a woman who was to become a close friend had been diagnosed with Lupus and Sjogrens Syndrome. Her rheumatologist was a pretty dominant type, while she doesn’t have my tendency to fight when I feel like someone’s taking over, so I watched her get progressively more overwhelmed by the whole process and land on a bunch of drugs with which she struggled, but accepted because ‘the doctor said so’ without any questions about alternatives.

Eventually, it was my choice to move my care to my general practitioner. As long as I was on basic drugs – the NSAID and pain meds – I didn’t see the point in spending the money on specialist fees. My then GP agreed, as subsequent ones did, on the proviso that if anything changed drastically, I’d go back to specialist care. That was fair enough, and that’s how it stayed for some time.

I do remember a fairly priceless conversation I had with that first GP though, that even now makes me chuckle when I think about it. I was getting a lot of muscle spasms that were causing a build up of knots that were particularly painful. Regular physiotherapy helped, to a point, but that was more of a bandaid than an actual fix. Ultimately, it was happening because I was overcompensating for joints that didn’t work properly by using muscles to do things that they weren’t really designed to do, so a highly dysfunctional dialogue had developed between the joints and the muscles that was difficult to manage. I was also experiencing a significant rise in my pain levels.

After some discussion with various people, and some research in the library (it was pre Internet and Dr Google), I went to her and offered up the theory that as Valium was, chemically speaking, a drug that functioned in the body as a muscle relaxant, a low dose of Valium might break the cycle that was happening between my muscles and joints, thereby dropping pain levels and allowing me to also drop the level of analgesia I required. I then sat back to let her chew on it. She thought about it hard enough for me to almost be able to see the cogs whirring in her head, then gave me a long considering look. Then she told me that the theory was sound, but that Valium wasn’t generally prescribed as a long-term medication, due to its addictive properties. However, by then she was well acquainted with my lack of desire to take ANY meds, so asking for one meant there was a serious issue, and she knew that I don’t have addictive tendencies, so she prescribed one bottle of 5mg Valium, with instructions to take it around three nights a week, at most, and see how it went as an experiment… It worked as I’d hoped it might, and it’s been on my meds list ever since. It can take me months to work through a single prescription, as I can go for quite a while before those spasms build to unacceptable levels that need dealing with, so as new doctors have come to know me, they’ve been fine about continuing to prescribe it.

When the disease suddenly switched into overdrive a few years back, my GP – a different one by that stage – who’d been operating on the same basis as the previous one dug her heels in once I went in for a stronger NSAID and a whole new level of analgesia and said she’d give me those, BUT it was time to see a rheumatologist. The one I found was wonderful.

His philosophy is that unless his patients are fully involved in the treatment and active in the relationship, he can’t treat us properly. He has encouraged me to read and learn – particularly since treatment styles have changed significantly between when I was originally diagnosed and when the wheels fell off. Every time he’s put forward a new drug, he’s supplied me with literature to read so I’d understand how it worked. At every appointment, he’s asked me what I’ve been reading, and often I’ve brought him information about new research that he’s not caught up with, or variations on a treatment of which he was unaware at that time.

One of those things, which resulted in a change in the delivery of my current biologic drug, was my discovery that taking it via subcutaneous injection gives a fixed dose with no variation. However, if it’s delivered via intravenous infusion, the dose is calculated by patient weight. That meant if I switched to the infusions, I’d be able to get a dose that was 750mg delivered in a single dose every four weeks, compared to 500mg from the sum four weekly injections. Because it was a drug that he used less frequently, and because he was also not generally in favour of infusions, on the grounds that they are restrictive on patients, that was something he didn’t know. When I pointed out that I’d not had severe side effects from that drug, and that it had worked quite well, but I’d plateaued at a point where he was starting to consider changing the drug altogether, I asked him if I could try the infusion to get the higher dose to see if that would make the difference, before the uncertainties of switching to a whole new drug. As I’d hoped, the larger dose did make a difference – enough to make staying on that drug viable.

Having just done a big interstate move, I’ve yet to meet the rheumatologist I’ve been referred to by my previous doctor. However, my previous rheumatologist got to know me well, and knows I need a doctor who will work with me, and respect the knowledge I have. So far, in a phone conversation with the new doctor, and many consultations with his staff as we’ve organized the transfer of my records, pathology services and the infusions, I’ve found them to be helpful and cooperative, as well as easy to access and prompt in returning calls. It bodes well for the future.

Clearly, I see myself as an active patient – as much as I ever stop to analyse myself as a patient…! Educating myself enables me to take an active part in the management of my disease. It does require that I have doctors that support my role in the process, but at the end of the day, I do believe it means that, overall, my disease is managed better than if I just sit back and allow the doctors full control, and let the disease be something that rules my life.

#RABlog Week 2016: Post No.1

So, here we are again...#RABlogWeek. Once again, I will be following daily prompts and posting each day for the rest of this week on topics pertaining to RA. I'll include the link so that, if anyone wants to follow up, will take readers to where posts from other bloggers can be found. Don't forget, we bloggers LOVE to get feedback, so please do comment if you feel so moved.

The prompt for today is:

Starting Stories: tell us about your diagnosis, what you were thinking, or feeling or when did you first know something was wrong. Or maybe you were having a break from a biologic medication and you decided to give it another try.

I wrote my 'starting story' last year, largely in response to the many women with children who have Rheumatoid Arthritis (RA), and the things they were saying online about not feeling as if they were the mothers they wanted to be since getting sick. So it's coloured by a parenting context, but includes the story of my original diagnosis, so I won't rewrite that this time. You can read that post HERE. What I'll do instead is have a more detailed look at what happened around four years ago.

As I wrote in the aforementioned post in May last year, I was originally diagnosed twenty four years ago, and for the most part, albeit with ups and downs, gradual deterioration and intermittent flares, experienced mild disease that was mostly managed with GP care, pain meds and NSAIDs (anti-inflammatory drugs). However, the one thing that can be almost unfailingly predictable about RA is that it is entirely UNPREDICTABLE. My disease is no longer mild, it's highly aggressive, and only just controlled by a raft of the biggest drugs I've ever had to take - and that has all happened fairly recently, and has changed just about everything in my life.

Four years ago, I was well into the second year of my employment as a marketing coordinator for a big, busy Sydney CBD Anglican Church. The job was varied, busy, and had regular pressure points and deadlines, which included the publication of a large monthy magazine. The hours could get quite long, and it could all get very stressful. I've always worked well under pressure, but it does take me down if it gets too much, or if it doesn't let up. So, when I found myself feeling increasingly exhausted I put it down to work stress. I made sure I was getting regular exercise to compensate for being at a desk all day, and to help me sleep, but that, too, was becoming difficult.

My regular morning walk was starting to be a real challenge, with increasing pain and stiffness. Then joints in my legs started to jam at work if I was at my desk for too long. I remember one day, moving to stand up, feeling my knee jam, but not really registering it in time to stop pushing myself up from the chair - and then it cracked. And the pain... Absolutely sickening, just awful. I was fighting to not throw up. The residual pain from that was bad enough that I didn't do my walk the next morning, and that was the beginning of a steady attrition of my exercise program.

We moved house twice in the next six months - more stress - and each time, I was able to help less and less, and got exhausted faster. Then I caught a cold. I landed a chest infection very quickly, and it got frighteningly close to pneumonia. I was two weeks away from work.

I never really came good after that. I was often in significant pain. Bought stronger over the counter pain meds, and eventually landed, on a walking stick, in my GP's surgery to ask for stronger pain meds and a stronger NSAID. She wrote the prescriptions, and then announced that it was time for a rheumatologist, because clearly something had changed. She gave me a list to call to see who I could get into fastest, and I was incredibly lucky to get a cancellation with a doctor who could see me straight away.

He started me on prednisone immediately to try and drop the inflammation levels, while he organised a pile of blood tests and got acquainted with my back story. Once again, although the disease had clearly kicked into overdrive, there was no positive rheumatoid factor. He started me on two DMARDs - Sulfasalazine and Arava - but the disease was spiralling out of control, and despite those, huge doses of Tramadol slow release (painkillers) and 50mg daily oral prednisone, I deteriorated to the point of needing a walking stick all the time, and struggling to manage a full day at work.

Then came the start of Methotrexate (MTX). That was a complete disaster. I had a terrifying reaction to it - more for those around me than for me...it knocked me out. I'd have a few hours after taking it of being able to function, and then I'd HAVE to lie down. And then I was pretty much out of it for the rest of the day and that night, and I have very few real memories of the five weeks that followed. that was the end of being able to manage at work, so I was sent home on extended sick leave. I continued to try and work from home, but until I stopped taking the MTX, my cognitive abilities were seriously compromised.

Eventually, I was admitted to hospital, and was there for two weeks while comprehensive tests of everything that COULD be tested were done, and then I was given a 500mg dose of IV prednisone. THAT was a miracle. Within 24 hours, I was able to walk again - painfully, but I could do it. My liver enzymes had spiked so I had to stop the DMARDs, and had to wait before I restarted them. The Prednisone burst lasted me a few months, and I started to deteriorate again, and had a booster late that year - to keep me going while we waited out the period of time on DMARDs that had to happen before I could potentially qualify for biologic drugs.

We got there eventually, and I did qualify - after more blood tests and an MRI that established unequivocally that it WAS definitely RA, and it was active, AND there'd been damage to joints.

There is a prompt later in the week about biologic drugs, so I'll write about that in more detail in another post. However, I'm on my third one now, and it's working reasonably well. I'm not 'well' per se. It's a continual balancing act. But remembering that awful period of sudden and severe deterioration over a very short period of time reminds me of how much better I am now by comparison.

It's been an enormously confronting few years, and has continued to deliver big challenges. I eventually lost my job, as I'd been maintaining the magazine and other parts of the job as well remotely, but a warm body in the office was required, and I wasn't able to predict exactly when I'd be able to do that again, so someone else was brought in. That's been very hard. I've tried to build up my freelance work, with mixed success - freelancing being notoriously unpredictable. I live with a level of 'normal' pain now that I have to consciously shove out of the way in order to think about other things. All my activities are carefully considered, and have to be balanced against how I am on any given day.

But, life goes on, and among other things, active disease has brought me into a diverse community of other people with RA which has meant new friends and connections, so it's not all been terrible. Sick or not, I'm still me in here, I still have dreams and aspirations. How I got about filling them may need to be considered differently, but it doesn't mean they're not there, and that I'm giving up on them. I'm stubborn like that! The side effects from the drugs have been hard to deal with too. I struggle with weight gain and hair loss...somehow I need to figure out a way to reverse those two... I'm acquiring a big collection of very funky FLAT shoes, because I won't wear heels again...but that, in itself, is fun. Shoes are shoes, after all, and there are some pretty cool flats available!

Surviving the big interstate move...

It's been more than a month since my last post... To those who wait with bated breath for each post (eternal optimist that I am...), please accept my apologies. And this will be short, as among other issues that come with a move, just on a full calendar month post-move, we are STILL not online... 

Our internet and Dragon Dad's mobile phone are a combination thing, and we were with a carrier who was charging like a wounded bull. In these days of a multitude of carriers, he took himself to them and asked them if they could do better, as he'd had enough of such a monster monthly bill, and was contemplating defecting to someone different who could offer a better deal. You'd THINK, given current marketing strategies, they'd have got on board to meet his needs, and not lose a customer... But, no. Couldn't be done, they said, For what you require, that's the cost. So, once we'd landed here, he chuffed off to a major competitor who had a good deal on offer, which included 150mins of free international calls (important when there's a brother overseas) and signed up. Received the new phone, got the number ported over, selected the accompanying internet plan, and then looked forward to the call announcing the time the tech would come and hook up the cable. Only, that never happened. Back and forth he went, on the phone and to the shop, and just piles of conflicting info about work orders and no work orders - much confusion and frustration building... Eventually, he went and parked himself in the shop and refused to leave (it was late on Friday) until it was sorted. So, I am now eagerly awaiting a courier with a modem, and hooking us up sometime this week - no more dongle with limited data!!! 

I have, however, made contact with my new rheumatologist. I'm not due to actually see him until November, but we've chatted on the phone and got a number of things organised. On Tuesday, I have the adventure of finding the hospital where I'll have my infusions, which is in an area I don't know at all... I have an appointment with the dentist to fix the tooth that spat out a filling two days after arriving here - he's booked up, but I'm on a cancellation list. Have found an excellent chemist who have already done one order of my biologic most efficiently. That was for a home based infusion...something that the drug company offers, but that I really didn't like much - hence the hospital based one happening next week. The cats were also very concerned and hugely protective, and parked themselves on my lap to supervise the whole time the drip was going...

We've been out and about, exploring the area. I've found the important things - ie, the good coffee spots...! Still sorting out the basic shopping places that fit us. Catching up with people I've not seen in ages. All that stuff you do in a new place. 

So, we survived. There are still boxes to unpack, and furniture to get. But our little house is starting to feel like home. I'm noticing - and appreciating - the lack of humidity. The days, when the weather gremlins remember it's spring now, not winter, are crisp and sunny, and have brought out some delights in the garden. In things to come, next week is RABlog Week. Regular readers may remember that event last year, and those who don't, or weren't following me then can go back to September 2015 and find the posts. It's a big international event and a big blogging challenge which I will be joining again. So, look for the posts next week on topics around Rheumatoid Arthritis. Meantime, please do enjoy the bluebells from our new front garden - I certainly am!

Moving House

It's that time again. We're moving. Again. A phone call this morning let us know we'd been the successful applicants for a rental house in the capital city of what will be our new state of residence. 

I hate moving. I did once add up how many houses I've lived in over the course of my life - it's WELL into double figures - large double figures. In the eight years Dragon Dad and I have been together, this will be my 7th move. That's just ridiculous. But it's also a long term pattern. The longest time I've ever lived in one place was six years - the house my parents bought when I was three and a half. That's a long time ago, and wasn't really a very long time.

On the one hand, it's a huge relief. This move has been 'pending' for the last eighteen months - if something can actually be pending for that long! It will be a good move for us for a great many reasons - not least being that Dragon Dad will no longer have to commute when the business is busy, as much of the business end of things are located there. I have lots of people on the ground there, while my network here has slowly shrunk since ceasing outside work, and getting sicker. It's WAY cheaper to live there than it is here - the rent on the new place is less than half what we're paying here. It is a smaller house, BUT it's a much nicer house. And we don't need a house the size of the current one. And it's still going to be cheaper than a similar house would be here, given the location. There is a great shul community there, and lots going on, so that will be a big part of our lives again. Big backstory that I'm not going into here, but it's been something missing for us for quite a while here. 

However, on the other hand, there will be losses. The two family members with whom I'm closest - No.1 son and a cousin - are here. The Stepson is here. My wonderful rheumatologist is here. He has someone lined up for me in the new city, and he assures me that the new guy and I will get along, as their methods and approach are very similar. My fabulous GP is here. It is SO hard finding a good, old-school GP. My awesome physiotherapist is here. The physio who, after thirty years of a dodgy chronic neck issue and countless physios who've treated it, not only fixed it, but gave me exercises to maintain function AND special ones to do if it starts to seize so that it won't. I've not had to have it treated since... I have seen her for numbers of other issues, but not the neck. We have a wonderful veterinary team here too, so I'll have to find a replacement for them as well.
 
Finding replacement medical teams is hard. Very hard. They are very important relationships, given I have an active chronic illness. I'll do it, because it must be done. But it will be a challenge, and I do SO loathe doctor shopping. I do have a dentist there - saves me hiding behind my fear of them to put off the necessary work, which you can read about HERE.

And then there are the logistics. ANY move is a challenging event. Interstate moves are so much more challenging. At the very least - on the positive side - there will be removalists doing it, and everything will be moved in one hit. Unlike the way we've done the last few moves, with Dragon Dad hiring a van and doing most of the heavy lifting. We do still have to pack, and once Dragon Dad gets going, he's a cyclone, so inevitably, there have been important things that have taken ages to find at the other end because his packing logic is completely different to mine. Given he's planning to get the cats and me there ahead of the truck loading here, I need to make sure that the list I'm making today of crucial items are in boxes I pack and label so that I can find them with a minimum of angst when the truck arrives and I'm supervising the unloading. Last time we moved I couldn't find the kettle for a few days. Dragon Dad doesn't drink tea or coffee, so no impact for him. It was another story entirely for me!

It'll be a huge adjustment for the cats. They came to this house as kittens. So there'll be new spaces to conquer. A new yard to explore. New crazy sprint routes to map out for their lunatic periods - it's one of those houses that, due to the layout and position of doors, offers a circular loop that will enable high speed laps, as long as the strategic doors are open!

We're offloading a large quantity of furniture. Part of this move is the fresh start - the first house Dragon Dad and I will share that's just the two of us. Coincidentally, the Stepson is moving out (of his mother's place) and into a share apartment with his girlfriend and they have nothing. So they're scoring most of what we don't want. Some of it would have had to go anyway, because we're downsizing, but it's time for a change. Most of it is Dragon Dad's from when HE moved out, and it'll be nice to refurnish with things we choose together. While I'm not a hoarder - he sometimes says I am, but I'm really not - moving constantly since early childhood means I've got emotional attachments to certain items of furniture and various bits and pieces because they mean 'home' to me. So regardless of the actual dwelling, as long as I have those things, it can become home. I have to be quite stubborn about those, because Dragon Dad is the opposite. He is quite capable of dumping an entire house full of furniture and starting over from scratch. Given that most of my remnants of household gods went when I moved in with him, I'm not prepared to give up any more. At least that means we'll have a dining table straight off in the new house, because my vintage baker's table is definitely going with us! 

Writing this blog post is partly a means of processing that this much talked about move is now an actual reality and the next few weeks are going to be [awful] hectic. And I'm procrastinating. The Stepson's move starts happening later today when Dragon Dad goes to pick up the rented van, and I have a bedside table to empty out. No great loss, that one - part of a collection of timber chests of drawers with baskets for drawers - ruinous for stockings and anything delicate and I've always loathed them! 

ONE useful thing that did occur to me this morning that could count as a benefit... the census next week requires our address to be included, and that's to be kept for four years, instead of the previous 18 months. Well, it'll be accurate for roughly two and a half weeks, and then we won't be living here, so what they have for the next four years for our location won't be valid. That kind of tickles too!

So, now I need to bite the bullet. Pause briefly to eat some lunch, make my lists properly, and get on with it.