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:
- 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.
- 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!