Psoriatic Arthritis. Why is this not taken seriously.

[beaton]

Seven years ago under the rheumatology dept. of the local hospital I was diagnosed with PaA. I sent three years trying different meds. none of which suited me. The answer was to be discharged from the hospital with no further help. I did get the usual year on esa but after that I was told I was fit for work and no further benefits were available to me.So four years in the wilderness. Why ?? what can I do?? If anything my condition has worsened. I can't work and I can't claim. Anyone else in this situation??

[Bazzypants]

Hi beaton, I think this is a difficult situation for you it would be a good idea for you to return to your GP tell him)her that your symptoms have become worse and you feel that you need to see an Rheumatologist again perhaps a different hospital or consultant may be an idea .. I do think a second opinion is much needed to your state of health. I wish you luck with it . xxxxxxxxxxxx

[beaton in reply to Bazzypants]

Thanks Bazzypants,yes I suppose it's my only option.

[Bazzypants in reply to beaton]

Go for it you have nothing to loose there are many treatments for your condition so I feel that the 3 you were given where not right for you but that was probably the tip of the ice berg where treatments are concerned push for the help don't let them fob you off xxxx

[beaton in reply to Bazzypants]

thank you Bazzypants, yes I must be more assertive. It's no good sitting here feeling sorry for myself. I must not give up trying.x

[binlid]

hi i agree i would go back to gp and get a certificate saying not fit to work then contact esa again and go on income based esa as i take it you have not worked and wont have the contributions to get contribution based esa and yes get refered to hospital good luck have you tried applying for pip

[beaton in reply to binlid]

Hi Binlid,thanks for your reply. I din't think it was worth pursuing benefits as last time when I tried to reapply for esa I was turned down. Probably because I had no new medical records.I must persist.x

[Hidden]

Hi beaton,

Sorry things are so difficult for you at the moment.

As Bazzypants has mentioned, it is worth going back to your GP for a further referral to a rhematologist.

I have put a link here for you about getting a second opinion, that you might find useful.

nhs.uk/chq/Pages/910.aspx?C...

Best wishes

Sally

[beaton in reply to Hidden]

Hi Sally,thank you for replying and for the link. I shall look into this further.

[Barrister]

Hi Beaton, you could go to the Citizens Advice Bureau and ask for help in applying for any benefits that you may be eligible to claim. They are very helpful and have people who are trained to do just this. Clemmie

[beaton in reply to Barrister]

Thanks Clemmie,

[Hidden]

I agree with what people have advised you to do. I have PsA and it took several different medications before I found the right one that helps me.

[beaton in reply to Hidden]

Thanks Georje,nice to know I'm not alone.x

[beaton]

Thank you everyone for taking the trouble to reply too my moan. Some times I feel I am fighting this battle single-handedly. It's good to know you are all out there just waiting to help.xx

[Hidden]

I've recently become aware that some rheumatology departments are saying that patients with PsA can try one, and only one, biologic. It's about how the NICE guidelines are interpreted, the wording is more ambiguous than for RA.

As for being declared fit for work when you're not, clearly this is something that people with many chronic or even acute diseases are coming up against these days.

You don't give a lot of information but it does sound as if a second opinion (which is basically a euphemism for requesting a new rheumy / hospital) should be your first step. Unfortunately, and shockingly in my opinion, some rheumatologists are still dismissive of PsA or lack the skills to diagnose and treat it appropriately. I'll do a bit of checking and message you with info. about UK rheumys who specialise in PsA. My own experience is of being dismissed and patronised by one rheumy, going through the process of a getting a second opinion and then finding (more by luck than anything else) a rheumy who expressed dismay at the state I was in. He is now treating my disease aggressively with the aim of achieving remission or as near that as possible.

I guess that without access to a consultant's opinion any claim for benefits will be a non-starter. I'm really sorry to hear how you've been treated. You are going to have to fight back - it's the same story for many people with RA and quite possibly even more of a struggle for many with PsA. The sooner you start the better, though.

[beaton in reply to Hidden]

Thank you Postle for a very positive reply. I think you have hit the nail on the head with regard to rheumatologists lacking skills and understanding of PsA. As I said I was seen by the hospital for three years. If I remember correctly, I only saw the rheumy twice,the first and last time. Other visits (every six months.) consultations were with registrars.On one occasion the reg. asked the rheumy for advice,the advice given was for a medication I had already tried.

When on Methotrexate,I attended other consultations with a pharmacist, who told me Mthx was causing liver problems and an alternative was available and I would be offered it. I was not,that was when my consultations ceased. The rheumy said he could do no more for me because I could not tolerate his meds.

I am glad you have found a way through this maze it has given me hope.x

[norfolkjo]

Hi I have psa and am struggling ti get back to work I am under hospital and have been lucky but biologic on offer were they offered to you

[beaton in reply to norfolkjo]

Hi Norfolkjo,I was only offered Methotrexate. The rheumy did not want to know beyond that.xx

[norfolkjo]

Im very lucky then my hospital have been brilliant. I have sulpha then metho with the option for injections and biologics . Im sorry you have not been so lucky. Get back to them and be bolshy xxx

[Hidden]

Hi. I have been diagnosed with PaA and ? RA. at this point I had not had the blood test to say if I had also got RA. However my Rhumey said it didn't matter and RA or PaA its the same thing. I'm on 20mg mtx and hydrocxyclophine. I had a hand scan that showed considerable inflammation and synovial thickening. I have just stopped work after 44 years and not yet applied for any benefits but I know I cannot work with the pain I have around my body. I have suffered with this for a few years now but was shocked at how quickly it escalated. PaA is very debilitating and at not quite 60 I am too young to give up work.....according to the government that is. So I fully intend to seek financial help....after 44 years of work I believe I have contributed and now I am in need I should get the assist5ence I now deserve. If the pains and aches were not so bad...I would still be at work. My advice is claim....claim...and claim again it is not your fault you are unable to work and as we all know there is no cure for our illness. Good luck to you

[beaton in reply to Hidden]

Thanks Joy,I have a GP appointment next week.I shall discuss with him,with all the advise contributing to that discussion.xx