Hi all, I’ve just realised it’s been over a month since I’ve posted, mostly due to the extreme fatigue caused by pneumonia. Oh the joy! Hoping the double dose of antibiotics has done the trick, though I read it can take months to recover 😮
Anyways, I wanted to talk about my RA.. I’ve been pretty lucky the past couple of months, apart from “remaining pain” it had been mostly dormant. But let me step back to February which was my last appointment with my rheumy. When she decided unilaterally to stop treatment.
Her rationale was that she couldn’t see any active inflammation so therefore my joint pain must be from Fibromyalgia. I’d been on Humira (my fifth RA med) for six months with no improvement in symptoms, and (I quote) ‘Humira works for 80% of people so it can’t be your RA, and there’s no point keeping you on very strong meds you don’t need’. There are actually so many flaws in this argument it’s ridiculous.
🔵 Firstly her numbers are incorrect. A quick search of the Internet will tell you that:
“In one study conducted in 544 patients who had failed previous DMARDs, rates of ACR20 response for Humira 40 mg every other week and weekly at 6 months were 46% and 53%, respectively, compared with 19% for placebo” Figures from RheumatoidArthritis.Net
🔵 Secondly I know my math is rusty but even if the 80% was actually correct, that still leaves 20% of patients who it does nothing for. Crazy I know but what if I was one of those!!
🔵 Thirdly I’ve had RA and Fibromyalgia for over two and a half years. I know the difference. RA joint pain is unique, the closest I can come to describing it is to imagine you can see your joint, with the synovial fluid sitting there protecting it nicely. Then imagine someone replacing that synovial fluid with acid. Burning acid. Fibromyalgia doesn’t get anywhere near that specific or that painful.
🔵 Fourthly (that sounds wrong) RA is a systemic chronic condition. Not everyone has visible swelling. And what about the stuff going on you can’t see? The 50% increase in the risk of heart disease, the ongoing damage to internal organs, tendons, eyes, increased risk of infection, narrowing of blood vessels….
“If rheumatoid arthritis is left untreated in the long-term, it’s not an exaggeration to say that your life could be at risk as well. “Persistent inflammation can lead to a shorter lifespan,” Pisetsky says” in a medical article from EverydayHealth
I digress a little, but I think the risks are kinda important. At my last count there are approximately thirteen different biological medications approved for treatment of RA in the US, though here in the UK we are behind with approving new treatments, which I suspect is down to cost. There are also different types of biologics that act on specific areas of the immune system, so if a TNF inhibitor like Humira doesn’t work perhaps a T-cell inhibitor like Orencia might. Lots of possibilities there huh?!
But – having already dismissed one rheumy and knowing there isn’t an endless supply of them locally I talked it over with my GP and decided to “play the game”. Because that’s exactly what it feels like, that I (the patient) am having to humour my consultant in the short term to stay on her good side so I can get the meds I need long term. So I sat back and waited. As I said my RA had been behaving for the most part and I’m kinda used to the pain so I let it be.
Week before last my fingers started swelling again (as I’m sure many of you know there is an RA rule that they will never do this on the day of an appointment!), and then last night my Carpals started up. These are the cluster of small bones on the back of your hand just before your wrist. Today I can hardly move my left hand. It sounds insane but this is exactly what I’ve been waiting for.
So today I’ve put in a call to our rheumy advice line which will get me a call back from the nurse within 48 hours. I’m also going to get bloods done ASAP and I’m hoping my CRP and ESR will be raised – compiling evidence!
So I guess it you could say that in the RA treatment game I’m currently a point behind but focusing on the next match.
Love & blessings 💙
2 thoughts on “Playing the RA treatment game.. ”
The bad news is you are behind. The good news is hat there are others. I think sometimes Rheumy’s treat patients who have not been in their practice long like we are idiots. I hate that.
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Ditto. It’s incredibly annoying, I think next appt will be a pleasant but firm discussion about me not being an idiot 😁