Posts Tagged ‘Update’

This time last week I was preparing to make my great escape from the hospital.  Thankfully, I haven’t been any worse since discharging myself, or for not actually receiving the Blood Transfusion I went in for; in fact, if anything, I’ve been on the better side.

I know this is because of two main things:

  1. I increased my Prednisolone back to 20mg after the hospital stay, so terrified was I of needing to go back! I should mention that my Rheumy gives me permission to do this. After many years dealing with Still’s I have learnt to judge when I need to increase my steroids and always tend to try and keep it as low as possible, due to my love/hate relationship with the stuff.  I am very careful with my tapering too.
  2. The GP made me agree to take my full dose of Tramadol for pain relief, which has taken the worst of the pain away at least.  I’ve also been taking the Naproxen he prescribed as a longshot.

These weren’t easy decisions for me to make.  I really don’t like dosing myself up every day and so have been keeping it all to a minimum for too long, which hasn’t done me any favours.  I realise this now; I was being stubborn and I wouldn’t advise it.  I needed this relief and, hopefully, it will only be short term while we get the Still’s under control again.

The Prednisolone must be doing its thing because I am managing to get out of bed on my own in the morning and am getting about okay; the chest pain and breathlessness has eased too.  My joints still aren’t happy though, with the odd grumble from my hips, stiffening of both knees and then of course, my left elbow and shoulder joints, which are terribly hot, stiff and swollen and seem to be unphased by any treatment – even the cortisone shots I had a while back.  It’s all bearable though.

On an even more positive note, we had a couple of friends round last night to discuss our trip to New York next month. Five of us are going to celebrate a 30th Birthday, but one friend lives in Spain so she couldn’t make it round obviously!  We spent the time talking about what we want to see while we’re there and, although I know it may not be easy physically, I am extremely excited about it all.  I don’t care if I have to pump myself up with Prednisolone and painkillers, I don’t want to miss a thing!

Hopefully, I’ll be feeling some definite improvement from the Orencia and Methotrexate by then anyway. I am now on week 6 of Orencia plus will be taking my 5th dose of Mtx tomorrow evening and I was told it usually takes 8-12 weeks for the two to be fully effective together.  Until then, I’ll just carry on being a good girl and take what I need to give me a better quality of life… I promise doc!


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I feel like I’ve been MIA this past week or so.  It’s been hard to think straight since starting Methotrexate, as if words keep falling out of my head, and the fatigue is back with a vengeance; all of which left me thinking I’d just do a useless job at writing.  I’m finding it hard to even decide what I want to say; I never wanted this blog to be just about me, but I’ll start with a catch up (there’s another word I want to use here but it’s fallen out) on how things are going in case people can relate.

I am convinced the Methotrexate (mtx) is making me feel worse than I was in the week between starting the Orencia and the Mtx.  After the first infusion I felt fantastic, plus I had colour in my skin, pink in my cheeks and life in my eyes; people commented on how well I looked!  Now I feel like a zombie, I look in the mirror and see grey skin and tired, bloodshot eyes with purple smudges under them and traces of a rash around them. Even with make-up I’m starting to look like I feel.

This is without make-up, with no alterations to the photograph - attractive no?

Whereas I was bouncing out of bed at a reasonable time (8.00am) and going down for breakfast, showering, dressing within the hour, I’m now having to force myself to wake up, sit for a while adjusting and then to drag myself downstairs to get something to eat/drink before heading back to bed with a book.  The rest has to wait until my medication and painkillers have kicked in enough to ‘liven me up’ and ease the acheys. Not as bad as a month or so ago, but still a step in the wrong direction.

I feel nauseous most days but it’s bearable and nothing compared to what I experienced as a teen.  I can still eat for a start, which is a big priority for me since I am a real foodie.  I and everyone else around me knows that things must be bad if I pick at a meal or say I’m not hungry – I’m usually willing to wolf down even hospital meals for pete’s sake!  I guess I’m still making up for the years I couldn’t enjoy food thanks to mtx, but that’s a different story…  The only problem with eating right now is that I get terrible stomach pains after each meal; sometimes I have to excuse myself and lie down until it passes, which it does after a while.

I don’t know what my bloodwork has been like recently, since the hospital have been keeping track of that. Once the infusions are every month I will have to alternate my blood tests between the hospital and my GP, while trying to conserve my veins.  I’m still getting joint pain and swelling although there is a tiny bit of improvement – my fingers don’t look like sausages and I can remove my ring again (phew).  I have general achiness in most places, but the left arm is definitely being attacked by RA – I can’t raise my shoulder past a certain point and the elbow doesn’t bend or straighten, only having a tiny range of movement.  Quite often both are red, hot and swollen.

It's pretty much stuck at that angle constantly.

I feel like the elbow in particular is heading the same way as previous joints affected by acute attacks of RA – for me inflammation seems to pick a favourite place during a flare and wreak havoc.  First it was my ankles as a child, then my knees as a teenager and my right shoulder in my early twenties… each needed surgery and I can see this needing the same at some point in the future, before it’ll ever be right. Of course, I hope I’m wrong.

So that’s where I am right now, it feels almost like limbo because I know that after both infusions I have felt a big difference (which is so encouraging!) and yet I get pulled back down to earth after taking the Mtx, which is making me feel rubbish again… and all I want is to feel how I did in that first week.  It’s as if I was given a little taste of ‘normality’ only to have it taken away again.  I’m not even sure how to communicate this with my Rheumy, improvement or no improvement?


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