My first blog-its on my profile.Hope you'll all under... - NRAS

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My first blog-its on my profile.Hope you'll all understand?

asasmum profile image
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Diagosed in 2008, along with hearing impairment,wear a hearing aid now. Then a year ago diagnosed with Type 2 diabetes. Looking back I probably had it for years but kept relatively active,good diet and luckily didnt smoke or drink so probably masked and kept at bay alot of the symtoms. I really have suffered big time. Been on lots of DMARDS,NSADS, infusions,and now on my 3rd TNF. Tried hydrotherapy and physiotherapy when able, but nothing lasts for long. I believe if they had given TNF quickly my disease and joints would be in better condition. Apart from my GP/surgery and hearing therapist the RA dept have been slow to react and pay lip service to this disease.Totally depressed and waiting for ill health retirement which despite all health professionals recommending, has been a nightmare as RA dept not available and totally judgemental/uncaring. What it is to have people who can not only sympathise but empathise too. Thank you all. When I feel confident enough I will start responding to the fantastic blogs you all write but for now I am done in. Asa's mum xx

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Hello Asa's Mum

I do understand - You have had alot to put up with over the past few years, at this time i too am frustrated with the RA consultants etc. It sounds as though you are in a poor condition and should be offered ill health retirement. Can you bypass the ra dept on this or is it necessary for their input. I hope you get some answers soon.

Poor you - I can relate to disenchantment with your rheumy service. I'm completely fed up with mine - if you can even call it a service where I live! My GPs are great though so they are my main support. I worry a lot about what you say about delay in getting you on anti-tnf being the reason you have suffered so much damage to date. I am not in loads of pain and the MTX seems to be working quite well but just worry a lot that low level aches and pains are slowly but surely eating away at my joints and as I haven't got any specialist nurses or doctors around where I live it seems to be assumed that unless you're in complete agony and can hardly walk - it's just normal to be in some pain and have raised inflammatory markers. Just keep taking the MTX and wait and wait for someone to see you some day.

But will it all be too late for me by the time I get my next consultation - who knows? Thinking of splashing out and going private and getting some state of the art rheumy down in London or somewhere South who can offer me something better than "see you again some day - keep taking the MTX at 15mgs meanwhile and let us know via your GP if you have any problems and then we might get back to you in a few months to let your GP know what would be the best course of action" - it's such bol**cks!

Hang about here when the mood takes you and we'll all do our best to cheer you up when you need it. TTx

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helixhelix

Hi there

It does sound as if you've been through a rough time, and having an RA that isn't responding well to the drugs must be hard. I'm so impressed that you're still hanging in there with work - but is there any way you could take time off sick until the retirement is sorted as this must be adding loads of stress.

I cut back on work after I was diagnosed and it's the best thing I ever did. Being able to have the time to look after myself better has made a huge difference. So hopefully it won't be too long before you can get that retirement and start to manage better. Do try to find a bit more energy to keep nagging away at docs and work people to get it sorted. Polly

So sorry to hear your story. hope your 3rd ant tnf helps you x

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