Passive Patient or Empowered & Educated?

It’s different things that attract our focus in #chroniclife – and unsurprisingly it’s often health related. Yes it’s slightly nerdy, often involves research, and it’s my decision,  but I’d rather be on top of managing my health than leaving it all to someone else. The real choice here is do I want to be a passive or an empowered patient, and I don’t do passive!

It was solely my decision to come off Arava (Leflunomide) on 16th May because I was suffering horrid side effects.  I researched manufacturers warnings, I looked at scientific and anecdotal evidence, and I weighed the pros and cons as they applied to me. I also applied the old “trust my gut” test – we have to remember we are the only ones who know exactly how we feel.

Ten days later and so far (touch wood) the indescribably severe itching that landed me in the hospital out of hours has stopped,  I’m not ‘passed out’ for 18 hours a day,  I’m no longer vomiting randomly and fairly frequently, and my BP meds now have a fair chance to work instead of being overwhelmed by the Arava. Hence my excitement at my BP slowly but surely dropping to near normal most days this week!

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Anyone with knowledge of RD is aware that we are at much higher risk of heart disease, so keeping my blood pressure on an even keel is really, really important.

As with all DMARD’s what works fabulously for one does nothing for another,  I know people who swear by Arava and that’s fabulous.  I was on it for just over six weeks, and while I appreciate that was early days I felt no benefit.  However it definitely didn’t agree with me to the extent that I was not prepared to give it longer just in case. Unfortunately we are still at a stage where we must trial each med like Guinea pigs,  waiting out both the RD activity and the side effects for up to four months before knowing if this is the med for us.  When you consider that with dmards and biologics there are over fifteen meds to try, some of which work better in combination, that can involve a lot of waiting!

Where I go next is a conversation with my rheumatologist, I’m slightly apprehensive as I’ve now tried all the basic dmards and the next step up is biologics.  I’m not nervous of taking them, I’m more concerned that for one reason or another I won’t meet the UK criteria.  I have RF+ RD,  I’m in constant pain, suffer intense fatigue, daily stiffness, I have ultrasound evidence of active disease, but I don’t always get the obvious swelling and my bloods often bear little resemblance to my disease activity/how I’m feeling.  And of course the only reason the strict criteria is in place is cost! As they say in the papers…. Watch this space!

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2 thoughts on “Passive Patient or Empowered & Educated?

  1. I am so sorry you have to deal with this. I do believe costs are the only sure things we all have to endure. Either we pay with our bodies or our pocketbook or more likely both.

    (RABlog week in September)

    Liked by 1 person

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