Anyone on anakinra would like some advice please also going for pip assessment today

I have adult onset stills disease went see rheumy last week an he's pleased with my bloods inflamation down but still on steroids and would like to take me off them so he said he's going to try apply for funding for anakinra he says we might stand a good chance due to all the problems an side affects of meds I've had and said that he will put he's concerned been on steroids 8 mths and have now ended up with insomnia and am cushingoid due to the steroids also I am about to be terminated from my new job that I should have started in Jan but wasn't able to. I have always worked full time so it's hard not only financially but also miss seeing friends and working does give you independence bit the Dr says he thinks full time would be to much and he thinks going back into banking would be to stressful. I have recently been getting a rash most nights and flu like symptoms then it goes and nothing there next morn which worried me as this was how I started with the stills Dr thinks it's been bought on by getting stressed about losing job. I also like most of you struggle with the fatigue just comes on and feel like I've been on a long haul flight but no holiday to go with it.

If anyone can give any hints and tips have got pip assessment this morning would be so grateful.

If anyone is on anakinra any advice would be great as I know we all different and react to drugs different but Dr says the only thing is the high risk of infections with it but he says it's still worth applying for just a bit worried because even though I'm not right I've come so far since xmas when my fella had to push me in wheelchair we were like lou an Andy from lil Britain not a pretty sight .

Look forward to any advice about pip or anakinra

Hope you all have a good day


7 Replies

Only just now seen this Jackie... I hope your assessment went well & the resulting award will make things easier for you.


Thanks so much for your reply meant to put something on last week just kept forgetting. We were in there nearly an hour and 30 mins was losing the will can't believe how they go over things that you have already filled in on the forms plus I sent lots of letters from gp and consultant also had sent a list from gp of all my medication but had to go through it all bearing in mind nothing as changed only filled in form just over a week ago was shocked to get appt so quick but I was surprised seemed to spend more time on my conditions and when I was diagnosed and whether it was a gp consultant an dates and then felt like everything else was rushed she even said we are going have to crack on and I felt like saying well if you hadn't spent so much time on stuff that I have already sent but obviously couldn't.

Hope you ok and are enjoying our fantastic summer lol

Thanks again keeping everything crossed will let you know


I think that's the quickest I've heard of, just over a week from applying to assessment, not much time to get nervous for you! How odd your assessor focussed on your conditions. As I understand it they're supposed to assess how our health conditions impact on our daily living rather than the actual health conditions, I certainly had that impression at mine. Most odd but nevertheless I hope it all added to your case & you receive what will help you, do let us know won't you? Everything that can be is crossed for you Jackie.

Drizzled on & off all day here & had a rubbish Rheumy appointment with a Registrar resulting in increasing MTX (not wanted) & possibly going back on HCQ (didn't work before so why should it work again?), back to fortnightly bloods again for 6 weeks, my nurse will be sick of me lol! Never mind I see my Rheumy in 4 months so will discuss it all with her then. Ho hum, at least it's supposed to be nicer towards the end of the week. x


I thought it was quick maybe they just can't wait to tell me I can't get anything cos so far haven't had much joy have to pay for prescriptions did a yearly full council tax and thought I had ppi on my mortgage but they altered it a few years ago i didn't realise and it only covered us if me or partner got made redundant it used to cover for sickness best of it that was done at the bank where I worked and I didn't realise so there was me thinking at least we could get help with mortgage.

Hope the hcq works or helps you this time good luck and hope increasing your dose of methertrexate doesn't upset things to much for you

Take care and good luck let me know how you go on I'm just torturing myself looking at holiday brochures dreaming of white sand and a cheeky cocktail


Well, look at it a different way, maybe things will turn around now & you'll be awarded PIP, sounds as though it was a thorough assessment.

I don't intend starting HCQ until I see my Rheumy as I had side effects from it last time one of which was headaches & I have those already due to neck problems, which he didn't concern himself about. I've to have a DEXA scan again as well. Only had one just under two years ago but it seems it's necessary to decide which bisphosphonate I try next. I'll hoping I'll tolerate the increase of MTX. My Rheumy agreed to an incremental dose (from 15mg to 17.5mg) because my LFT's have gone haywire in the past going straight to 20mg.

Are you thinking of going anywhere nice or are you just trying to cheer yourself up?! ;)


Just thought would look at some nice pics nothing much on TV and so dull out we normally go Malaysia but we had to cancel this year but love looking at brochures I used to work in travel agents remember the old Lunn poly ad get away lol


Aw that's a shame. Copy me in on your reverie! ;)


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