Adult Onset Stills - medication and antibiotics

Ben91

Good evening everyone,

I was diagnosed in June last year, and have been getting used to routines to keep healthy, however there are still new experiences that I am coming across. A bite on my leg got infected which meant I had to come off my treatment last week. As I lay in bed with my whole body aching, struggling to sleep, I’m just wondering if anyone else has experienced this and what tips you have.

In my mind I’m thinking that even a simple bite feels like it has set me back months, and it’s quite scary to be honest. I feel like it’s five steps forward at times, but then it’s six steps back as soon as something happens.

Sorry to sound so down with this, and I know that I’m quite lucky to have a problem like this when so many of you suffer with worse symptoms on a daily basis. But I guess I just need a little pick me up..

Ben

stickywicket

No need to apologise, Ben. It's all pretty new and scary for you right now.

I don't know what sort of a bite you had but some are nastier than others even for those not on any immunosuppressants. For those of us who are on them we just have to be a bit more careful with everything. I've always stopped mine for a week as soon as I feel a cold, sore throat or anything coming on just to give my immune system a chance to fire up and help out. Please, always consult your rheumatology team before doing anything they haven't authorised. Basically, I guess I'm saying an infected bite could floor anyone. We are more susceptible but that doesn't mean to say it will ever happen to you again. Try to take measures to prevent such things. Don't go near bitey animals. Wear long sleeved shirts and trousers when near places with midges etc. And, if it does happen again, you know to enlist the doc asap for antibios so that the difficult time is shortened.

I doubt it's set you right back. I think, once the antibios have done their job and you can get back on your normal meds, they'll work quickly. I guess it's a different lifestyle to before the Stills but you'll soon find coping is second nature.

Ben91

Thank you @stickywicket .. I really appreciate the reply.

Getting used to it is the biggest part and it’s the simple things that I didn’t have to worry about before that are proving to be the problem, but I guess it’s a learn by experience scenario in this case.

Those pesky insects never used to come for me before as my wife was the human shield, but apparently now my blood is more tasty.

I have been in contact with rheumatology every step of the way, and to their credit they have been great.

Thank you for the tips though ☺️

stickywicket

I'm glad you have a good rheumatology team. That really does help. I've always been very grateful to my GPs too. Obviously, they can't change DMARDS and don't have the greater knowledge of all things rheumatological but they can prescribe pain relief and usually know a bit more than we do anyway. And I've always found mine very patient at explaining what I don't understand.

My husband, who is not immunosuppressed, has always been an insects' feast. He's considering cutting down our raspberry canes as he can't venture there without being bitten.

Pharmacists, by the way, are very useful sources of information as in "I'm on these medications, could you recommend an insect repellant cream?"

I hope you'll soon be feeling better again.