Adult Onset Still's Disease

klp28

My partner was diagnosed during the first covid 19 lockdown with Adult Onset Still's Disease and I was just looking for some advice regarding his treatment. I know this disease is very rare, so this may not be able to be answered here, but I'm concerned about the way the hospital is handling his treatment. He's been suffering with Still's since April and it took nearly 3 months of being told he had covid and to stay at home and then finally 3 weeks in hospital for him to be diagnosed. He was originally treated with 20mg prednisolone and this helped to begin with, but as his treatment started to be lowered to 10 mg, his symptoms came back with full force (temperature above 39 degrees in the mornings, rash under the arms and on the feet, joint and muscle pain). He's since been put back on prednisolone 40mg and this is again being lowered, but now that he has reached 20 mg again, his symptoms are returning. His consultant started off being super helpful, however he has since left and it feels as though from the moment he announced he was leaving that he's really dropped the ball. His new consultant hasn't contacted him for an appointment yet, but the last news we heard is that he will likely be put on methotrexate as well. So I was really just wondering if anyone here also has Still's (or a family member who does) that might be able to advise what treatment helped them? I know everyone is different, but me and my partner are so new to this disease and it's really hard to find out what other treatment options we might be able to ask the consultant about. Many thanks!

Brynmor

HI @klp28 and welcome to the Online Community.

I understand that your partner has a diagnosis of Adult Onset Still's Disease (AOSD) and is undergoing a course of treatment with the steroid prednisolone but with difficulties in finding the right level.

Our website has a very useful page of information on AOSD which is well worth reading, including information on treatment options and suggestions for managing the symptoms. The page also links to our information on steroids where you will find more information about prednisolone .

https://www.versusarthritis.org/about-arthritis/conditions/adult-onset-still-s-disease/

The request for help with AOSD has come up before in the Community and there is a long-running conversation (linked) that has been added to over the years from starting back in 2011 that you might like to scan through for helpful information. Many of the members posting are not currently active although @stickywicket or @zoemew may be able to answer your questions.

Finally, we have just published Amy's Story: Surviving Stills that appeared just a few days ago on the website. Amy has an Instagram account linked in the article which is a great network of online support for people with the condition.

Do let us know the outcome of the meeting with the consultant. Don't hesitate to come back to ask questions, give support to others or just call in for a chat to let us know how everything is going. You will be made most welcome.

All best wishes

Brynmor

klp28

Hi Brynmor,

Thank you for this! I have directed my partner to the thread you sent above and he's found it quite useful just to read through. I will send the other bits over to him too to have a read through. It's good to finally get some useful information so thank you!

Best wishes,

Katie