Newly diagnosed with stills disease

[Dellylou]

Newly diagnosed with stills disease

[oldtimer]

Welcome, but sorry to hear your diagnosis. As I said to a previous new poster, remember most people who post are having problems. We don't hear, except occasionally, from the people who are doing OK on treatment.

[Dellylou in reply to oldtimer]

Hi many thanks for your reply, it's all so new to me, I came out of hospital only 3 weeks ago, was hospitalised for 2 weeks, the day after I got married!!

I am being well looked after by a good rheumatologist, who has also referred me to see specialists at the national amyloidosis centre in London for specialist help, my rheumatologist feels my stills is steroid resistant, but we are trying at the moment to reduce the steroids and replace with methotrexate, I just can't figure out if it what is making me feel bad again, the steroids reducing causing problems with withdrawal, the steroids reducing causing the stills to flare up (I reduced a bit too quick the first week from 60-50mg and I ended up back in having my knees drained and steroid shots), or whether I'm not suiting the methotrexate. My bloods show my inflammation is so much better than when in hospital, but my consultant thinks that's because the steroids are doing their job! I'm currently down to 40mg steroids and 3rd dose of methotrexate now. Just wondered if anybody knows about steroid reduction and flare ups really, but stills is quite rare so finding people who've experienced it is difficult!! Thanks for the welcome though 😀

[Dellylou]

Thanks for your reply 😀 it's all so new, scary and unsure territory at the moment for me! Don't know what's happening if truth be told! I'm not sure if things are working or not! I'm glad I've a good rheumatologist and also he's referred me to the national amyloidosis centre in London, I'll be going to see them on 9th June 😀

Reducing steroids isn't much fun as they've helped me feel better since being diagnosed 5 weeks ago, and not sure the methotrexate is working or whether the feelings/symptoms I'm feeling are the steroid reduction, the stills disease flaring up or the methotrexate!! So I'm confused!!

[EmmaS-NRAS NRAS]

Dear Dellylou,

Sorry to hear about your diagnosis but pleased that you have found the NRAS HealthUnlocked page. We have some information on our website about stills which you may find helpful:

nras.org.uk/what-is-adult-o...

Pleased to hear that you have got a good rheumatologist. The Methotrexate can take anything from 3 to 12 weeks to really start to work so hopefully it will start to work for you soon. If you have any concerns, do ask your rheumatologist or consider giving the NRAS Helpline a call (0800 298 7650).

Kind regards

EmmaS-NRAS

[Dellylou in reply to EmmaS-NRAS]

Thank you Emma for your help, over the last few weeks I've read lots of information so I may off looked at this already but I will look again incase I've not seen it.

I just can't figure out what is making me feel ill again, steroid reduction, the stills returning because of the steroids being reduced or that the methotrexate isn't suiting me? I suppose I have to give it some time to see!! Thank you again for your email 😀

[Dellylou]

I'm having my two weekly blood tests Thursday so maybe after I get those results it'll give me maybe a bit of a clearer picture whether the MTX is working. The hope is to reduce the steroids and replace with MTX without the need for biological medicine! I just don't like the way it's making me feel at the moment, but like you say who knows what's working, I do feel like a Guinea pig at the moment, a bloated Guinea pig to be exact as the steroids have made me look like a hamster!

[oldtimer]

Coming down off steroids often makes me feel quite unwell, and more so if the inflammation isn't as controlled as I thought. It's early days for you as well on treatment, so you may just have to wait a bit. But don't wait in silence, keep asking your medical team for answers - they may give different answers and make you feel confused, but at least they know you are not comfortable!

[Dellylou in reply to oldtimer]

Hi again, thank you for your reply, when you reduced your steroids did your doctors put you on a DMARD, like methotrexate to see if it would be a steroid sparing drug? I am down to 35mg this week and gave felt quite poorly, I take my tablets all at once in the morning after my omeprazole and then I take my steroids, I have a pick up through the day and find in the late afternoon I start to go downhill, my symptoms of stills return, sore throat, joint pain, muscle pain a feeling of my whole body just like it's being attacked again, night sweating has restarted too, but not sure it's the steroid withdrawal causing it? My last bloods were two weeks ago and I was on 50mg steroids and my doctor said my inflammation was much lower, my ferritin levels had gone from 11,000 to 1,000 although it should be 45-145!! Next bloods are being done tomorrow maybe I'll find the methotrexate working and my inflammation and ferritin are even lower - who knows hey! I will though be talking to some specialists soon at the national amyloidosis centre in London so I'm hoping they can give me some more help and advice X really appreciate all your comments x

[oldtimer]

I was put on MTX at the same time as the steroids. MTX wasn't a success for me, but I'm now (eventually) on azathioprine - but I still need to take some steroids. Had problems with my bone marrow being attacked by auto-immunity too - don't worry very rare!

[Dellylou]

Hiya again did you come off mtx because it didn't agree with you? I'm down to 30mg steroids as of today and 15mg mtx but I feel awful and have done since I started reducing the steroids, then I take the methotrexate and that makes me feel really bad for two days of so aswell with other symptoms, nausea, feeling like I'm exhausted more and even more severe pain all over my body. I'm going to the national amyloidosis centre in London in a few weeks so in hoping they're going to help me out!!!! Xx

When you reduced your steroids what level did you get down to, did you flare at any point and what level of mg are you on now still? Xxx