Stills Disease

[Foxgloves64]

I was wondering if anyone on here has Adult onset stills disease? Am hoping to find someone who has it and can chat to me.

[BoneyC]

In 1971 I was dx with Stills Disease, (which I think is now called systemic onset JIA) but since then my medics have always called it RA. Adult onset Stills Disease is quite rare and might be different?

[Foxgloves64 in reply to BoneyC]

I'm sorry that you've had this since 1971, most of your life I imagine? Yes I understand it is very similar to Juvenile arthritis which is what I assume you have. Yes Adult onset Stills Disease is very rare and so far I have not managed to find another person who has it that I can chat too, hence why I wrote on here.

[BoneyC in reply to Foxgloves64]

Thanks, I was 6 and already my little fingers on both hands had bent (and never straightened since) so chances are I had it for some time, but it went unnoticed. I don't remember having any rash or fever, just swollen knees, aching feet, a stiff neck and feeling tired. Quite why they decided it was Stills, I don't know, was the label JIA around in 1971? Not sure, but I do have marked deformities in lots of joints despite about 40 years of MTX.

I hope you find someone with AO Stills, there must be others out there. Do your doctors still refer to it as Stills, or RA? I imagine the treatment is similar, if not the same?

Best of luck!

[Foxgloves64 in reply to BoneyC]

Goodness how awful to have all that start at 6 years of age or even earlier. All the symptoms are the same as stills but I also had a rash, spiking fever and sore throat that last about 6 months. It's pretty much under control now thank fully. It's just everytime I have some new symptom or illness I wonder whether it's the Stills or something unrelated. It's hard to find anyone as apparently only one in every 100,000 get it! Can I ask what strength MTX you're on?

[BoneyC in reply to Foxgloves64]

I'm currently injecting 20mg, but have taken 25mg orally for 40 years. It's been the best DMARD for me. Humira and Rituximab were ineffective and I'm sceptical about some of the others (better the devil you know), you don't know what chemicals you're putting into your system and feel like a guinea pig.

[Foxgloves64 in reply to BoneyC]

Thanks for your info.

[Hidden in reply to BoneyC]

I also have AOSD and just found you on here. Diagnosed aged 17 now 59, still suffering but managing, be great to hear from you?

[PM193]

I have had it now for 7 years! Happy to chat about it

[Foxgloves64 in reply to PM193]

You're the first person I've found in 20 months who has Stills. I would love to know lots of things. Did it take a long time to get diagnosed, Is it still active or are you in remission, and are you still taking medication for it? That's just a few questions to get started with! Hope you don't mind me asking so much?

[PM193 in reply to Foxgloves64]

Honestly it’s so rare and so frustrating! Happy to give you some pointers. I was diagnosed at 19 I started off with a rash for a month or so that would come up and disappear, flu type symptoms and the odd twinge in my joints, then one day it just went BAM, and it was like everything hurt all at once and I felt like my body had been beaten about 500 times over but no visible signs of anything like bruising etc. It took about 3 months to diagnose. I was in and out of my GPs office they thought the rash was hives, the pain in my body they thought was fibromyalgia. Then in the end they referred me to a rheumatologist, who was great he got me into doing all the blood tests, biopsy’s on my lymph nodes to rule out lymphoma, scans etc, after a month - 6 weeks of appointments he said that I had stills disease, a rare autoimmune disease.

He put me on the highest dose of Prednisolone, with omeprazole for stomach protection and as I slowly came down on this he gave me the highest dose of methotrexate which Is 25mg for rheumatology plus folic acid to calm the side effects of the metho. So I stayed on methotrexate for about 2-3 years, then I stupidly thought I’d take myself off as I thought I was clever and knew my body better than I did. So for 18 months I had no symptoms and then my dad passed away and slowly after a short while the pain and rash crept back up on me, I had a flare up and then my gp put me on prednisolone, then I came off again, then last October I went back on and didn’t get back off till april this year. As I hadn’t seen my rheumatologist for 18 months I had lost a slot at the hospital and had to start over again, when he saw me he was horrified I was given all of those tablets without being referred to him first. He has popped me back on methotrexate and lowered my dosage on the prednisolone ever so slowly. I have been on methotrexate again now for 4 months, I still get rashes, and I’m currently on holiday with a huge flare up and desperate to find some pain relief, stupidly I only brought double strength paracetamol, because I haven’t had a painful flare up in a long while. So frustrating but this disease has ways of reminding you you cannot step out of line for one minute with your meds!! When I get back though I start azathioprine - hopefully this helps me!

I hope this helps, how has your journey been so far? Are you on medication that has it all under control?

[Foxgloves64 in reply to PM193]

Thanks for sharing all that info and I'm sorry to hear it has flared up again for you My story is similar to yours in the beginning although I'm a lot older. Over the last few years I've had a lot of constant stressful situations that I really believe brought the disease on. In 2017 I had a couple of episodes of feeling very unwell, fever and flu like symptoms and painful joints. I was tested for Lymes disease but that was dismissed. However in December of 2017 I became much worse with a fever, rash, joint pain especially my hands and wrists and a very sore throat that lasted about 6 months. Doctors had no idea what was wrong with me and the majority of them were useless leaving me very tearful and doubtful that I would get better. Out of desperation one dr prescribed Prednisolone and within a couple of hours I had some relief of the pain. By mid January I paid for a private appointment with a rheumatologist and he very quickly diagnosed Stills.

I slowly came off prednisolone and started on Methotrexate, increasing to 25mg like you. However four days after starting it I had an episode of tachycardia (really rapid heart rate lasting an hour or so) this has continued throughout the last 18 months despite being told it has nothing to do with the medication I feel it probably does! I managed to capture my own heart rate with a brilliant little monitor that connects to my phone and they diagnosed me with Supra Ventricular Tachycardia (svt). Been on and off meds for this but not on anything at the moment for it. I also started a lot of menopausal symptoms last during all of this time that has been quite difficult to cope with at times.

I feel like my Stills is under control and don't think I have any symptoms at the moments although I do suffer from a painful right knee (probably OA) and right wrist and hand at times and regularly get a sore throat that hangs around. I'm not sure if the throat is to do with Stills or my compromised immune system due to methotrexate? So hard to tell. Due to mouth ulcers and sore throat and the svt I have badgered my consultant regularly to reduce my methotrexate and have slowly reduced it down to 10mg.

Sorry for the lengthy reply!

[PM193 in reply to Foxgloves64]

Thank you for your response and I’m so sorry for your suffering. I absolutely agree with you with regards to the stressful situations that trigger Still’s Disease. I was in a toxic relationship and also had to make a very tough decision to terminate a pregnancy early on whilst I was 18. Stills Disease followed about 8 months after.

When I thought I was in remission my dad then passed away which has now brought up all of these flare ups as now I suffer majorly with anxiety - so I believe stress, anxiety etc all plays a huge part in all of this for us.

If you everwant pain relief I have noticed that the non-steroidal drugs can sometimes work just as well. I take one Naproxen in the morning, then 2x codeine tablets every 6 hours and another Naproxen at dinner. So try that rather than letting them put you on stronger drugs for other aches and pains (if they do).

To me, it sounds concerning they haven’t pulled you straight off of the metho due to the mouth ulcers, I was told this means your body has high toxicity - I was told this by my rheumy - but yours will know what they’re doing I’m sure.

I would usually say the sore throat is one of the starting parts of the disease flare ups for me, I get the rashes really badly, all over my arms and legs, sometimes on my chest if it is really bad, then the sore throat which feels like there’s a lump in it, then I get pains all in my neck around my glands to the point I can’t move my neck, then I get the muscular aches, it could be that because I had a wisdom tooth infection, that that brought on a flare up, as this can happen too.

Try taking some supplements too, I am happy to post these if you’re open to taking them? I always check with my rheumy before I take anything though, just incase they interact with the meds but as you’re on the same, I’m sure it’ll be fine.

I was also on Hydroxychloriquine which worked really well alongside my Methotrexate, this would be great if you can perhaps speak to your dr regarding taking these also?

A good family friend of mine actually advised me to buy the book ‘Say No To Arthritis’ - this is something she has sworn by as she has Rheumatoid Arthritis, which is what Stills Disease mimics. She said it’s really really helpful - and it has diet ideas that could really help with our disease too. She also advised I take Curcumin supplements from Holland and Barrett as they have a Penny Sale on :).

I’m really sorry to hear that you’re suffering and with your heart rate too that must be scary, but with regards to your Stills, you’re not alone! There are a few of us dotted around! I watched a couple of YouTube videos the oTher day when I was feeling sorry for myself there was a reassuring one from a rheumy in America, and then one from his patient - it can be controlled and in the future, the dr says in the video, it may even be stopped (his words).

Frustrating also that you’re menopausal and struggling with the symptoms of that - unfortunately I cannot relate to that but I’m sure it just feels like one thing after another. But as my boyfriend said to me the other day when I was feeling very sorry for myself in bed “don’t say why me, say try me!” Sounds a bit cheesy but keep telling your stills it won’t get the better of you, keep telling the menopause the same!

I’m sorry for my long old reply too, so much to say!

I hope you have a great day. X

[Hidden in reply to PM193]

Would be good to chat.Diagnosed aged 17 now 59, other AI afflictions too but cope well.

[Hidden]

Just found you. I have AOSD, diagnosed aged 17 now 59, be good to chat?