Help please !

[Vonnie10]

How long does everyone go on before contacting CNS? I'm on toclizumab injection I hope it's not failing had good results for some years but my hand is in a bad way can barely use it everything is difficult right now pain is awful its been a week now and its getting worst as the days go by was wondering how long everyone goes before contacting the helpline maybe I need a horrible steroid injection to calm it down.

[Lolabridge]

I've found that sending an email to my Patient Helpline is really good - especially if you can send accompanying photos of any swelling or joint damage. As you've been struggling for a week I think the time has come to let them know about your problem, how it's affecting your daily life (very important!) and how long it's been happening. Hopefully, if you send that off today they will call you tomorrow with advice or a plan of action. Good luck!

[Gottarelax in reply to Lolabridge]

I'd love our rheumatology clinic to have that facility. I find it much easier to type a message and to add pictures would really help. For me it's just an answerphone. They are fairly good at responding though.

[Vonnie10 in reply to Lolabridge]

Thanks so much my gp was amazing he had me come in gave me a steroid injection nurse won't get back until at least Monday/ Tuesday he wast happy leaving me for that length of time , he took photos said it's acute it's been going on for 1 week getting worst each day im gutted as toc was going great , ring back my helpline tomorrow re urgent review I hope it's a blip but won't know now until steroid as wore off We don't have a email facility it a phone helpline we leave a message and they get back to you Hate steroids give me terrible side effects but I know it's the only thing that settles it down can't use my hand it's very limited in what I can do . I can't straighten or bend it nightmare .

[Lolabridge in reply to Vonnie10]

So glad your gp helped and hope you get relief soon. I hate steroids too but sometimes there just isn’t an alternative. I’m on Prednisolone (tapering now) as waiting for my new RA drug to become fully effective 🤞🏻

[Gnarli]

That sounds so horrible. I hope the steroid shot helps to calm things down quickly for you. The side effects are something else aren't they? With any luck, you will be seen soon and a treatment found to alleviate your suffering pdq.

[Vonnie10]

I hate the steroids today the pain is a little less I felt like my hand had been slammed in a door it was horrific pain I get awful ocd/ anxiety for 2 weeks at its peak from.steriod then it settles down but gp gave me 10 loraxpam to help with it only upside is the house and gardens will be looking fab. I have a phone call with cns on Monday goodluck you two people don't seem to realise how bad ra gets thankfully everyone here get its .