Adult Onset Still Disease

zoemew

Hello.

I don’t know if this is the right forum but I just wondered if anyone can give us some advice. My husband was diagnosed with adult onset stills disease, a type of arthritis. A year since, several bouts of cyclophosphamide and Rituxymab and he’s not much better. Still suffers daily pain and low energy. The doctors are awesome but obviously they’ve been a little busy lately and so we don’t feel like we have their full attention! I just wondered if anyone had practical advise on how to sleep while on steroids, or have come across realistic anti inflammatory recipe books or plans.

We know we need to do something cause it’s really getting him down. I’d just appreciate any advice on how to cope with it in a day to day basis until the doctors work out how to sort him out.

Thanks so much

Al

Hi and welcome,

It's great to meet you, you have come to the right place for information and conversation with others like you living one or more forms of arthritis

There are many here more than happy to share their experience as you share yours.

This link is for general information regarding any type of arthritis

About arthritis

https://www.versusarthritis.org/about-arthritis

Find out more about the different conditions, treatments and how to manage your symptoms.

if you have a specific question please post in the Living with Arthritis discussion or for general chat in the Chit Chat discussion. Just join in wherever you feel comfortable

Al

stickywicket

Hi and welcome from me too. I was diagnosed with the standard childhood Stills way back when but it's kind of morphed into RA now. (Same meds.)

You're right that medical matters are all up in the air right now but I think your husband does need medical advice here as he seems to be on a lot of meds already and, if steroids are keeping him awake, that sounds like quite a big dose of steroids to me.

One thing I'd say is that most of us have to accept a certain degree of pain - it's just a matter of finding a tolerable level. What the rheumatologist will be concerned with is disease activity rather than pain. Pain, if the blood tests show the disease to be under control, is something the GP can deal with.

Personally, I'd forget about recipe books. Just eat healthily and check out the exercises that Versus Arthritis recommends. I find that the less I fee like doing them the more I need them. But very gentle range of movement ones when flaring. Not strengthening ones.

I know it can be hard to get hold of docs right now but I think it's worth trying. A telephone appointment is usually easier. And your GP might be able to help you get an appointment with the consultant. Again, a te,lephone one might suffice.You are not being a nuisance.

Ben91

Hi @zoemew,

I am going through a similar thing to what your husband is at the moment - I am 29 and was diagnosed 5 months ago, so there is very little I know about AOSD itself or treatment causes but I am finding little bits out as I go along.

I started a higher dose of predniolone about 6 weeks ago, which really helped with the symptoms but to the detriment of my sleeping patterns and my need to eat everything in site. I really found that reading before I went to bed was a great help, instead of watching TV. I often fell asleep with my phone reading the news, whilst laying in bed (Brightness right down and night mode switched on!). I also slept better on days that I went for walks; no matter how long or short the walk was, it seemed to be a great help. Before the walk I would feel sore and achey, and when I got back I felt a lot looser. My partner keeps referring to me as the tin man, and that I need to go out walking just to lubricate my joints! :)

After I was diagnosed in June/July, I was probably the fittest I have been in weeks as we were walking 5-10km per day and doing resistance band training. However, this was whilst I was on furlough. As soon as I returned to work the routines quickly changed and the symptoms came back. The return of them really knocked my mindset and I started to feel really down. I got into bad habits of waking up, work, revision and sleep. After talking with my partner and friends, I am slowly getting back to exercising more and more each day and I am starting to feel a bit better again. There seems to be a correlation not only between exercise and symptoms, but also between exercise and mental well being. I would really suggest this to your husband. Even if he feels too sore to go and walk, you have to initially 'power through' the pain. Ibuprofen an before hand in the morning (Shortly after steroids have kicked in) I have found to be the best times.

Hope this helps and that your husband starts feeling a bit better soon.

Ben