If you have RA you go on the TRACTISS trial but not if its PsA. You look in books on Sjögren's and Lupus everything is RA psoriasis barely gets mentioned. You show your rheum a photo of your mother's hand oh nasty Oesteoarthritis! NO it was advanced PsA! Nothing much has changed in the 50 years since! I have now got Lupus, so am I eligeable for the TRACTIS trial NO! Why! I also have Ehlers-Danlos I'm shrinking not swelling as my muscles are wasting. I have endured 14+ totally inappropriate operations seen 50 + specialists been given all the wrong drugs as I'm hypermobile spent hundreds of thousands of pounds on all this. We are now so poor I can't afford anything and my GP can't help me. He is restrained by the local health authority. Why?
I know EDS has only been out for just over a year but I have so far educated 8 consultants.
It would be interesting to know who has PsA because it's just as nasty as RA but you have to fight for recognition why? The photo shows calcium leaking through my skin.
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New47
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Oh you poor poor thing - PsA is my idea of disease from hell. My diagnosis is of seronegative RA but I'm really not convinced. My toes (nails and skin) look like yours and I get similar white spots on my skin too - mainly on my hands and face. I have lots of HU friends with PsA and met a top rheumy professor from Glasgow who said he has a PsA clinic and feels it's a terribly misunderstood and underrated disease. So many of my symptoms coinicide with PsA rather than RA but I've only ever had eczema rather than psoriasis.
However it is my understanding that PsA qualifies sufferers to be fast tracked to the Biologic drugs such as Enbrel and Humira - because DMARDs are often not as effective for sufferers as they are for people with RA or Lupus? I'm unsure what TRACTISS is though?
I believe I have EDS too but have so far not had this mentioned or diagnosed by any rheumy. Someone here advised me not to bother mentioning this to my new rheumy when I see him in a month as apparently it just furnishes doctors with something else to blame symptoms for but fail to treat.
If you are right then I have absolutely no idea why PsA is seen by many as a less concerning or treatable disease than RA. My RA is classed as non erosive so I don't qualify for any more treatments having had serious allergic reactions to four DMARDs. I can only assume it is because RA is more common than PsA, easier to diagnose and treat in seropositive form, and requires specialists to work together rather than being simply a rheumatic disease? To me it seems much worse because it affects the skin and nerves as well as the joints.
in reply to
Ps and I know it's also closely linked with IBD/ ulcerative colitis too - another kind of hell.
My consultant diagnosed PsA and put me on Methotrexate sub cut injections. For me it has made a difference. I also have osteoarthritis and use BuTrans patches to help control the pain
He did say that normally you have to suffer from Psoriasis to develop PsA
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