Riding the increasingly large waves of Stills Disease

JessicaLizzie

Hi

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. 😪😪

frogmorton

@JessicaLizzie I was so pleased to see you replying to someone this morning when I logged in. I have often wondered how you are doing.

So disappointed to see how much you are still struggling though. I'm glad you have got so much organised a PA and 4 wheeled walker you have been incredibly pro-active managing this disease. I have no doubt you will finish that course by hook or by crook you are such a determined person.

As usual I have nothing useful to say other than to hope I have linked this thread (or part of a thread) which might give you some hope that your nre drug Kineret might be the answer for you:

https://community.versusarthritis.org/discussion/comment/386402#Comment_386402

Reading is wonderful escapism isn't it? I'm so glad it has helped you. My life is enhanced so much by reading.

Please do let us know how this goes for you I know @stickywicket will be keen to hear how you are doing too.

Take care

Toni x

JessicaLizzie

@frogmorton thank you so much for the link to that previous post - that gives me so much hope! Really kind of you to still think of me. The support from you and @stickywicket really has gotten me through this. I will get through this Masters, I'm so determined and stubborn that I will very much make myself complete it 😅 it's just so incredibly frustrating and when your baseline is feeling like you've got the flu plus all the joint pain, it can feel really isolating and depressing. I've had a few people saying 'oh you're looking really well' and I just want to scream internally while externally I just say thank you. I know they mean well but can't help but think if they were experiencing what I have 24/7, they'd not leave the house. I'm usually such an understanding person but lately I find myself feeling quite frustrated at people who moan about having a cold. I know I shouldn't be, and of course I don't say anything to them which reflects how I feel inside. I think it's probably because I'm going through what feels like a whole grief cycle in trying to come to terms with this awful disease. I don't know if anybody can relate?

I'm so nervous about going back to uni for a number of reasons. Mainly I'm worried how I will cope emotionally - uni students aren't necessarily the most thoughtful in terms of keeping away when unwell, and of course everybody on my course has been on placement through sept-Dec while I've been here trying to make it through each day. I think that's going to hit me hard when they're all talking about it and everything I've been through hits me.

But on the positive, I really do value the little things now. I am so grateful to be able to move my fingers, to be able to get up/down the steps to leave my flat, to have my PA.

Anyway I'm rambling, I hope you're both keeping well (as well as you can be).