potential new diagnosis ?? - Adult onset Still's Disease

charleeh

Hi all,

Hope everyone is well enough to have got out and seen some nice early spring flowers

After having my blood levels exceed the 300 mark (again) my doc decided to give me a full dose of Tocilizumab and increase my Methotrexate to try and get it under control again however he said my disease (sero negative arthritis) is acting rather strangely....

I have a really itchy rash that comes and goes

I get very painful muscle ache as well as joint pain

I had a sore throat also that tends to come when my meds are normally running out when i need treatment. and I go through periods of being very hot.

He mentioned that it might be Adult onset Still's Disease, but he is not sure as I do not always have all of the symptoms. They come and go intermittently but maybe my current medications could be affecting my symptoms - ?? this is my thought anyway.

I have looked into this Adult onset Still's Disease and I am pretty convinced there is a high possibility that I could have it - I have lived with the diagnosis of Sero Negative Arthritis for the passed 6 years though.

Just wondering has anyone else got it or know much about it as you can't find a lot of info about it online....

Thanks - best wishes - charleeh

elnafinn

Hi Charleeh

There are very few people dx with Stills Disease that have posted on this forum.

Here is a thread that was started in 2011 which may be of some help to you:

http://arthritiscareforum.org.uk/viewtopic.php?t=23425#467183

Elna x

charleeh

thank you so much for that - that was really informative.

as I said my doc isn't really sure as yet but I have some of the symptoms but on and off.

I guess my sero negative arthritis must be a name for an arthritis that is either yet to be diagnosed or yet to develop?!

thank you again Xx

stickywicket

It's always nice to have a proper name for things but I doubt your treatment will change.

Officially I have Stills Disease (the junior version) but I always say RA as no-one has ever heard of Stills plus I don't have any of the complications such as the rashes.

charleeh

Cheers Sticky

lizajane10

Hi there, the juvenile form of Still's Disease is Systemic Onset JIA and you'll find several people on the 'My child has arthritis' forum whose children have this, including my son now 16. As he got it when he was 15 it's juvenile, if he'd been 9 months older it would have been Adult Onset Still's Disease.

He had a high fever (39 or more) every morning which would reduce by evening, and a non-itchy rash which did the reverse, i.e. disappear in the morning but flare up each evening. Also joint pains of course - in his case almost every joint except his back and neck but it would move round each day. I don't think he had a sore throat. It was really the fevers that confirmed the diagnosis - we started taking temperatures every couple of hours and had a very dramatic daily pattern.

To be honest though the treatment is similar to other forms of arthritis - anti inflammatories, methotrexate and Enbrel (and prednisolone in the early days though stopped now) so it may not change.

charleeh

Thank you

x