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Hi everyone.... I've suffered with rhuematoid arthritis for 9 years now - I'm 29, diagnosed at 20. It's never been under control, I have been through loads of biologic drugs, humiera, cimzia, enbrel, tocilizumab to name a few (sorry about spelling) all no improvement or reactions to them. Been on high dose mtx could not tolerate it even tried injecting it. Tried hydro whatever it's called and sulfasalazine no good. Currently on infliximab an trying just 2 tablets of mtx to see how I go. I've had no improvement yet but just infections after infusion like all other treatments I did. Also have patchy colitis, underactive thyroid and bad depression.
My wrists are fused I can not move them at all. A couple of toes also. My fingers are really deformed already, and my left knee has been swollen for 2 years. Fluid turned to gel so draining no good and steriod injections don't work. Struggle in every day to day thing, and my mobility is awful.
My joints effected are, toes, feet, ankles, knees, ribs/breastfeeding bone, shoulders sometimes, wrists, all fingers, neck and jaw when I'm bad.
As well as my infusion, I'm on :
Mst 60mg morning and night
Oramorph 10mg 4 x a day
prednisolone 6 a day
Diclofenac 50mg 3x a day
Sertraline 50mg a day
Mtx 10mg a week
Senna 2 a day
Ducosate 4 a day not sure of mg on last 2
Think that's all
Anyhow the reason I'm posting... Sorry for all the info wanted to give yous a quick background.
Today I had a pip assessment... the lady was lovely and it was not scary at all. I had been petrified, I had read on here they make you feel comfortable so you drop your guard if you have one. I was completely honest an just told her how I was didn't exaggerate as some people told me to.
She didn't really ask many questions or the questions I was expecting... like how many bad an good days do you have.
She was also putting words in my mouth kinda.. finishing my sentences.
When she had finished the questions an talk she said I would normally now ask you to do some things an would assess you on that - but I can clearly see how much pain your in an I can see from your joints how you are... and also the amount of pain relief your on tells how bad you are. So I am refusing to do that an I will state that in my report.
Has anyone else had a similar experience? Or have any thoughts on what the outcome could be. I've read a lot about them saying one thing to you an then receiving different things in your report.
I have suffered for years with this... an never applied for this after people telling me too.
I'm at a point now where I'm house bound an literally can not do much at all. I feel ashamed being out in pupil the way I walk because I'm a young woman. I just can't cope any more an hope I do get this now so I can get extra help.
Any advise or previous experiences shared would kindly appreciated
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