Feeling frustrsted

[Crazyjo]

Told at hospital app yesterday that I may have to accept that I will not get any better then I am now. Felt like a kick in the teeth,so frustrated

[farm123]

Don't really know how to respond but I can share my experience as my team are also clutching at straws to help and although 'better' than over the last 3 years ago I am not 'normal' and don't think that will ever happen again. Currently on Abatacept self inject (with the team saying may only be one other we could try) it took a lot longer than 3 months to help but because of running out of options they wanted me to continue and introduced 200mg hydroxychloroquine after 6 months (only DMARD and dose level I can tolerate) and had both knees and shoulder steriod injected 10 months after starting and from then on I slowly improved. Just had a knee replacement at 48 to try and 'remove' the worst affected joint from the equation and after 6 weeks off Abatacept hope it will continue to work when I can restart. Mine is sero-negative inflammatory arthritis. Sorry this is more of a negative response. Farm

[Hidden]

Personally I would find such a statement very hard to accept. I had just a quick look at your previous posts but not enough to get an angle on how your disease affects you and which drugs you've tried.

The two things that I'm wondering about are whether all options can really have been exhausted and also whether you are doing all the things that you yourself can do to combat the disease.

I think I'd find a verdict like the one you've received very demoralising. I don't know if I'd have the oomph to keep exercising and taking great care over what I eat and trying get the best sleep I can etc. etc. etc. if the rug was taken away from under me like that. However, I would hope that someone on here would strongly suggest that I didn't stop trying, that I sought a second opinion, that I fought back against the disease and against defeatism. So that's what I'm suggesting to you.

Could be that you at least partly agree with what you were told and are thinking how you can manage your expectations from here on and that I just don't get the whole picture. You're the best judge after all. I'd just like to know more ..... about what's been happening and about how you're feeling.

[allanah]

If I had a penny for the number of times people have told me things like that.

If you are " good enough" maybe that is better than being very poorly?

Keep positive it's amazing what the power of the mind goes x

Hugs x

[Stynk]

I have been told a similar thing. That although remission is the objective, we have to consider the possibility that this is the new baseline of normal. It's very hard to stomach. But if you take it as a baseline there is room for improvement and a point to measure any deterioration. I am sorry for you.

[Hidden]

I was told the same recently. I was offered classes to learn to live with my disability. Sad day, huh? Thanks for sharing. ( my back gives out 4 times a day)

[farm123]

Hope you are OK - it is such a big mind adjustment that this may be as good as it gets. Try and focus on how you can make the best of it - I bought a mobility scooter so there was no more of 'we can't do that because your Mum can't manage it'. Farm

[mcrparader]

How are you getting on? I've had that said to me a few times by my consultant at the QA. I'm just in Denvilles. I've had RA since 2008 and had 2 courses of rituximab since 2013. I've had to stop taking methotrexate a number of times as it affects my liver so badly. Longest time I'd been stopped from taking it was a year & I restarted the injections last Tuesday. My gp is in Havant and they have been very supportive.

Take care,

Mcrparader