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Posts Tagged ‘Confused.com’

Well, what a day.

Arrived on the ward (just in time for lunch) and had my canula fitted, bloods and obs taken etc.  The nurses asked how I’d been since last time and I told them I had definitely noticed an improvement since starting the Orencia infusions.  I have a bit of a wait after that so settled down with my Kindle; an hour later one of the nurses came in looking quite worried and asked me if I was sure I was feeling okay, that my test results had come back and were so bad they were trying to contact my Rheumy.

They spoke to him on the phone and he said he’d pop up when he could. I was glad of the chance to talk things over with him, as I have been feeling confused and the blood test results only made me more so.  I told him how well I had felt after the first infusion and that I was noticing some improvement with my energy levels even if it hadn’t reached my joints yet, many of which are still stiff and painful.  I explained that the Methotrexate had given me some side effects, that these had lessened slightly to effect me mostly on just a few days (Friday, Saturday & Sunday) but left me feeling drained and sickly.

Today was supposed to be one of the good days – I thought I had a bit of colour – but my Rheumy said I was noticeably pale, so I told him about the bad days when I look like a zombie with purple rings round my eyes.  He told me my haemoglobin level is 8.0, so that at least explains it.  I am worried that it is the Methotrexate causing the Anaemia but my Rheumy says it’s more likely to do with the Still’s Disease being active and having lots of inflammation – Anaemia of Chronic Disease.  My GP on the other hand, thinks I have Megaloblastic Anaemia caused by low folate levels and since Mtx is a folate depleter it would make sense that it has become worse since starting it, even with taking a Folic Acid supplement.

They did check my Folate level yesterday but the result didn’t come back while I was there; Rheumy said he’d keep an eye on things and see me again at my next infusion in four weeks.  Hopefully by then things will have settled down and the methotrexate will be doing more than making me feel queasy – it takes 8-12 weeks for it to boost the mechanism of the Orencia.

I did at least get my infusion, but I was left completely befuddled by what had been discussed.  How can I feel so certain of an improvement when my bloodwork is getting progressively worse? Am I imagining that I can get out of bed in the morning, without assistance? That on most days I am showered and dressed by 10.00am instead of having to wait until my painkillers etc kick in, usually only getting myself ready after noon?  I know that I’m still in quite a bit of pain with my joints but I was happy that I at least had a bit more energy; but how can even this be when I am so anaemic?

There have been times when I’ve felt dreadful and my results haven’t been too bad, so just how reliable are they?  I guess all I can do is carry on the way I have recently, believing that I at least feel a little bit better, and hope that the results settle down and catch up with how I’m feeling. If I think about things too much, I’m just going to get more confused and disheartened with it all and I don’t want to give up on Orencia just yet.

L

Previous posts related to this one:

First Orencia / Abatacept Infusion

Second Orencia Infusion

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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?

L

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