#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.