I officially start on my first course of ‘Disease Modifying Anti-Rheumatic Drugs’ or DMARDs tomorrow. After a pretty horrendous week pain wise I’m slowly coming to terms with the fact that I’m going to have to take some serious drugs for the rest of my life whether I like it or not.
When I first saw the consultant he gave me the option of three of these drugs to have a think about.
I started doing some research and my reaction was the same to all of them … err no thank you very much! In my mind Methotrexate was a chemotherapy drug so that was absolutely out, Sulfasalzine might make me go orange so that obviously wouldn’t work for me and Leflunomide would mean I’d have to wait a minimum of 2 years after stopping the drug before even thinking about trying for a baby so that’s a no there too!
After writing the whole batch off, it then dawned on me that it wasn’t the individual cons of each drug I was rejecting, it was the concept of actually taking these drugs … everyday … forever … that I was struggling with.
This might sound strange coming from someone who is already very used to the idea of taking daily medication. (In fact as part of my diabetes care you’re talking more like hourly medication. Luckily my insulin is administered through a pump so a lot is pre-programmed (by me) and doesn’t require an injection each time, but I still have to be acutely aware of what my sugar levels are doing in order to make the many daily adjustments required to eat, exercise, drive, or even just to sit and veg on the sofa as even this have an effect on your basic requirement and has to be factored into the day’s requirements.) But, it turns out, I seem to have a major aversion to tablets.
It’s not the physical swallowing of them or anything like that, but the thought of being tied to a strict schedule FOREVER. Again, I’m aware of the how ridiculous this sounds when I have the discipline to manage my diabetes but am freaking out at the thought of taking daily tablets! But I really am so rubbish that I even had to stop taking the oral contraceptive pill because I was so useless at remembering to take it that I could never have relied on it anyway.
But this is it now. I don’t have the luxury of choice anymore. I don’t know what it is with me but I just hugely resent the fact that I have to take them at a time when ‘they’ dictate! And what happens if I want a lie-in on a Saturday?? That little tablet will sit on my bedside table saying “I don’t care what you want, tough luck, you have to wake up and take me now, so there”.
As you can probably tell I’m not feeling particularly great about everything. Trying to manage an existing condition, process a new, life long diagnosis and make important treatment decisions whilst in immense pain is physically and emotionally draining.
My BF is still being solidly supportive, but I have found myself consciously trying to hide the pain I’m in, or at least its severity, as I don’t want to become a broken record and I know it upsets him to see me suffer. Is been harder these past few days as both my ankles and right hand have visibly swelled and I'm struggling to do things for myself. But I still think when he comes home from work, walks the dogs then cooks (and sometimes even cuts up) my dinner the least I can do is offer him a smile and ask HIM how HIS day went.
As a result I feel less like a walking embodiment of chronic pain and more like the real me!
Continuing along these lines, prior to my consultant appointment on Friday, I decided to give myself a firm kick up the backside and get on making these treatment decisions for myself. I’m fully aware that the choice may not be mine if the drugs don’t agree with me, or that I may end up on a combo of lots of different drugs that I probably haven’t even heard of yet, but for now at least the choice of what to try first is mine.
Leflunomide is still absolutely out. Although we are a little way off babies the 2 year “wash out” period would mean I’d have to come off it pretty much at the same time as starting it which is pointless. One down … Methotrexate is my consultants first choice, however the baby issue does mean that I may get stabilised and then be facing coming off the drug to facilitate a pregnancy which isn’t ideal, also the fact that this drug is an immunosuppressant does make me more cautious as diabetes and serious infections are not a nice combination. So that leaves me with Sulfasalazine.
Now I will just clarify that Sulfasalazine does not make you go orange! This sweeping statement was a convenient way for me to discount the drug when I was feeling a little irrational. Yes it can make your wee a little more colourful (lovely!) and there can be some discolouration in the eyes if you wear contacts, which I don’t, but it is not the equivalent to being tangoed.
There are other side effects which I’ll have to be on the look out for of course, plus an increased chance of it not agreeing with me as a higher percentage of people can’t tolerate sulphur based meds. But it can be used in pregnancy if required and should have less of an effect on my immune system’s ability to function in its everyday job of keeping me well – and clearly it needs all the help it can get!
My BF in his fantasticness has decided that Sulfasalzine sounds like something from the pages of a Harry Potter spell book! In fact whenever we talk about it he takes great delight in casting the Sulfasalazine spell over me with a flourish and flick of his imaginary wand.
We will have to wait and see whether it is the magical solution or not, but for now thanks to him, its name makes me smile so it’s a good place to start.