Wednesday, 2 November 2016

Endless drug tweaking with Rheumatoid Arthritis

"You're taking a LOT of stuff,", said my new GP this morning, as he reviewed the list of medications I'm currently on...

Yes, I am. As I said to him, I have two 'breakfasts' - the one on the plate, and the one in the eggcup...and then repeat the eggcup with most of what was there in the morning 12 hours later in the evenings. I walked out of the consult with a prescription for yet another medication, as well as instructions to go buy slow release paracetamol to add to the arsenal of pain meds. So, the eggcup will be that much fuller after today. 

Despite the lineup of current meds - two DMARDs (Disease Modifying Anti-Rheumatic Drugs) and a biologic (all three immuno-suppressants designed to modify the current overdrive of my malfunctioning autoimmune system), anti-inflammatories, a drug to protect my GI tract from said anti-inflammatories, three different dosages of a slow release pain med so I can adjust as required, a pain med I can take to boost the slow release one when it's insufficient, a muscle relaxant for intermittent use, and Vitamin D to aid bone strength, my shoulders are deteriorating frighteningly fast. This is a bit new. For a long time, my shoulders and hips were fine. Now, they're rather less so, and the shoulders are much the worse of the two. 

I don't see my new rheumatologist until the end of this month, after the next infusion of my biologic. I've had to bump up my regular analgesia to cope, and add the booster of the short release painkiller to manage the nights. I'm sleep deprived, foggy from the extra analgesia, and fed up with just how much medication it takes to keep me THIS good - which really isn't marvelous. 

So, off I went. Thinking that, perhaps, it would mean a shot of cortisone to the shoulder joints - something that can have pretty impressive results, so I'm told. As a needle-phobe, I never jump at the chance to have one stuck in me, and have only ever had this particular shot once before, to my gammy knee. And yes, it worked, and very quickly. But I've reached desperation point. 

Instead of the shots, I walked away with the new script and OTC drugs and instructions to give it a week to see how I go, and then perhaps do a short burst of oral prednisone...sigh. It took me a year - a YEAR - to taper off prednisone after the last burst. The GP is saying a five day burst, if necessary, so I'm not looking at that scenario again, but still...bloody pred. My MOST disliked drug option. 

The needle-phobe part of me is hugely relieved to have not had to face the needles. But the rest of me is frustrated by the lack of a clear-cut, quick fix. Cos, ultimately, I want to know what the hell is going on in my shoulder joints, so I'll be asking the new rheumatologist, when I see him, whether getting some imaging done would be a sensible thing since this has been going on for months now, getting increasingly worse. Because it MAY be something for which there is a specific treatment that could make a big difference to my every day, and the nights. 

But this is the everyday experience of this disease. The one that people, in the main, just don't get. The day to day pain that's never stable from one day to the next; the unpredictable effects of so many drugs, on their own and in combination with each other; and the constant frustration of never feeling actually well, despite the myriad therapies. 

I AM thankful that the doctor really listened this morning, and zoomed around online really trying hard to figure out a possible solution. So I'll give it a go, because I'd really like to feel better than I've been feeling, but what I wouldn't give for twenty-four hours of NO pain, some energy, and a nice day to actually enjoy it...


  1. Hi Kaz, Just found your blog -I'll go back to the start and read it but thought I would say hello - I've had RA for (oh my goodness am I this old?) 45 years - luckily well controlled by methotrexate - nice to meet you!

    1. Hi Pip - welcome!! Well, that really sucks, and I'm sorry this is what we have in common...good to know you have the beast controlled though.

  2. Hi Kaz, to me I would rather have a cool doctor visit than a treatment. I love doctors treatment like I know something. Even if it is only my feelings.

    1. I SO hear you Rick. All this morning, through the new Endep fog (which is on top of the tramadol fog, the Arava fog, the Orencia fog AND the straight old RA fog, I've been going over and over yesterday's visit trying to figure out exactly what happened. Cos there were some pretty basic things that DIDN'T happen, and so now I'm annoyed about that on top of all the other stuff I wrote about in the post. Seems to me that there's still an awful lot left for doctors to learn about treating PEOPLE. Not just diseases, not just the patient, the whole person!