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Psoriatic Arthritis - Anyone Else?

(4 Posts)
Mulberry72 Thu 05-Jan-17 15:55:46

Hello All,

1st post in here. I was diagnosed with Psoriatic Arthritis in March 2007 after having my son in Oct 2006 (Consultant seemed to think pregnancy triggered it).

Fast forward to today I'm on my 6th biologic treatment which is failing exactly like the previous ones. My Consultant has written to me to say that she has contacted the Deputy Medical Director and the Chairman of Medicine & Community Services, Drugs and Therapeutics who've both said it will be practically impossible to get further medication funded, so she's had to complete a detailed funding request all about my previous failed medications and I have to write a letter detailing how PsA affects me and my family and see if they will grant more funding taking into account my letter.

I'm trying to put a letter together but it's really hard as I don't know how to pitch it, do I just stick to facts or do I put some emotion into too? At the moment my draft is very emotional (it's hard to see my difficulties laid out in black & white) but I don't want them to dismiss it as flowery nonsense.

Any advice from either a patients POV or the NHS POV would be greatly appreciated smile

MollyHuaCha Thu 05-Jan-17 19:54:46

💐for you...

I've been on biologics for years for a different condition. This medicine has changed my life, but the last two infusions have been less effective. Luckily I have some other NHS funded options to move onto. Sorry for your situation. Hope it works out for you smile

CoconuttyOil Fri 06-Jan-17 21:56:15

Sorry to hear you are struggling to find a treatment that works for you.

See section 3 of this leaflet - it's aimed at patients with MS but the advice around IFRs should help www.mssociety.org.uk/sites/default/files/Documents/Campaigns%20resources/Access%20to%20Medicines_England_FINAL3.pdf

Also you could get in touch with a patient advocacy group or arthritis charity. They may have experience helping other patients in your position and be able to give you advice.

Good luck

Hulababy Fri 06-Jan-17 22:06:04

Sorry to hear you're finding it hard to get suitable treatment which works.

Have you tried contacting something like the national psoriasis organisation for advice?

I have PA. I was diagnosed a few years back now. Fortunately at present a combination of medication is keeping it mostly under control so I have much more limited pain/discomfort most of the time.

Maybe one of the P/PA foundations might be able to help with wording?

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