Riding the increasingly large waves of Stills Disease
Its been a while since being on here. I saw that I'd had some further books suggestions on my post from October, which ironically I didn't see as I was too busy reading than to come on here! 52 books read last year compared to a usual 1 or 2. It's been a great escape for me.
Anyway, just thought I'd post here as I'm sure others will have experienced similar. I was diagnosed with Adult-Onset Stills Disease late August (I think!) last year, was on methotrexate and prednisolone, with IV infusions of prednisolone too. I was slowly but surely improving and started being able to walk with a 4 wheeled walker for longer distances (still very short distances for other people but massive improvement for me from being unable to walk at all). Around Christmas I started to feel worse again, and then on new years eve I had a full on flare - complete rash, fever, nausea, sore throat, headache, myalgia and pain in my back, knees, elbows, wrists, hands, fingers, toes, neck. Since then I just seem to be going back to how I was before treatment - feeling really flipping unwell. I've spoken to my consultant and specialist nurses and they're starting me on anakinra next Friday when I see them, alongside the methotrexate 20mgsubcut, and 10mg prednisolone. Problem is, I'm meant to be returning to Uni on Weds. I've managed to get a support worker sorted who can drive me there and be with me on campus. Thankfully its only 1 day a week on campus as its a MSc course so more independent study. But right now I can't see how I can do this. I have no option other than to return to Uni (for various long financial reasons). Obviously that's a big worry for me which is adding to me feeling completely and utterly fed up.
I don't think I've ever felt so much anger towards anything before - I hate this disease so so much. It's ruining my life. I'm 29 and rely on my PA to go out places. We tried to go to tesco today - I managed walking from the car parked right outside the entrance, collected one item which she carried for me, and I was in so much pain I thought I was going to be sick. We had to leave.
I don't understand why I'm going downhill when my methotrexate has been increased. I know next Friday isn't far away but it feels like forever at the moment. And I know logically the anakinra will probably take forever to begin to work like the methotrexate. I'm on tramadol slow release, I have all the meds I need but nothing helps the fevers, the sore throat, the rashes, the feeling just really unwell. I've so had enough of this.
Just to top it off, I had to get bloods done at the hospital after speaking with rheumatology. They took 11 vials (admittedly I burst into laughter when she told me all those little tubes were for me!), and now my last decent vein has most definitely tissued and there's a big solid lump underneath the even bigger bruise there. So next time I have bloods they're going to have a right job getting a vein. 😪😪
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