Unsure of what to do

deedles

hello my name is Deanna I am 28 years old and was diagnosed with psoriatic arthropathy 8 years ago recently my symptoms have worsened and my mental health has declined I am currently taking time off my 3 day a week job because of this I have applied for pip in the past but due to not having a great understanding of my disease I was rejected I am currently taking salazopyrin sulfasalzine which seems to have very little affect on my arthritis I am constantly fatigued and in pain and my psoriasis has never been this bad i am not sleeping and constantly in a state of anxiety due to money troubles and not knowing what to do I guess I’m just looking for some advice on how I can cope better with my condition and if I am likely to get financial support 💙

frogmorton

Morning Deanna

It sounds as though your PsA is not under proper control and you need your meds looked at. When are you next at the Rheumatologists? I hope it's not too far off.

If you can get some advice before filling in those PIP forms you stand a better chance of getting awarded it.

https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/fill-in-form-pip/

Take a look at this.

It's not the condition which matters it's how it affects you as an individual. That's the important thing. Less the meds you take more what you need help with. PIP isn't, in theory, to top up income rather to help us to manage our conditions which is why that is key.

Of course many if not all people do use it to top up their incomes aa working is just so tough when you are in pain.

Maybe a chat to citizens advice (the old CAB or citizen's advice) bureau might be a good idea anyway? Getting an appointment takes a while so get one booked if you can well well well before your forms are due back.

Take care and keep posting we have a fair few members with PsA @jamieA for one he knows sooooo much!

Toni x

deedles

thank you so much I am so grateful I will definitely look into that 🙂 my next appointment is the 15th of may but I find it hard explaining to my doctor exactly what is wrong I often forget things and because of my anxiety I will rush through my appointment I am thinking of writing things down before hand so I can just read it off rather than relying on my memory.

Sable42

Hi I am in in the same boat and just looking at what help I can get financially. I suggest you keep a fatigue diary and include other symptoms . That way you will be able to say how you are affected. I am in Methotrexate injection and just about to add in Sulphasalazine. Just had a massive flare up and can't work.

frogmorton

Absolutely write down everything you want to discuss.

100% it's so easy to forget what you wanted to talk about and come home feeling cross with yourself.

Good luck for 15th @deedles

@Sable42 I hope your flare settles down quickly

Toni x

deedles

I have just been on the phone to the doctors and they are signing me off for two weeks due to my depression and anxiety work have called and asked me to attend a meeting however I do not feel I can in my mental state I’m really not sure what to do I’m so worried 😔

PJoanne

Hello @deedles, I think it would be a good idea to have a chat with a supportive friendly person. Our helpline number is:

0800 5200 520

Please give them a ring, the helpline is especially here to help you.

Wishing you the best

Joanne

deedles

thank you so much I am in touch with a few organisations now unfortunately I have been dismissed from my job but to be honest with you I wasn’t copeing with it and it may be a blessing in disguise I appreciate you all for reaching out.🙂

jamieA

Hi @deedles

I'd agree that writing down you questions in advance of your rheumatology appointment would be a good idea. Maybe take a notebook and ask for time to write down the answers. I'd also suggest that if you could take someone with you that could help with the answers you receive would also be helpful. The only other advice I could give is try to be more assertive with the rheumatology medics you see. With me I'd assumed that the medics would quickly push to find a treatment for my PsA that worked for me - unfortunately that didn't happen. I then realised that I needed to be more assertive in my dealings with rheumatology medics and put down in writing my treatments and outcomes to my rheumatologist stating that if he wasn't prepared to help me I'd like to be moved to another rheumatologist. I'm now on a combination of sulfasalazine, MTX and the biologic adalimumab and that has helped greatly.

I hope you get some help that works soon.

Fgl1960

Weeyin

Hi there, so sorry to hear of your issues. Definitely keep contact with Rheumatology even if you don't have an appointment. I've found the QEUH, Glasgow Rheumatology nurses & consultants very helpful. Your GP wont be much help as they are not the specialists

Contact CAB & any local financial advice centre.

Ive had PsA 27 years, now 51. Ive been on adalimubub 15 years. It's made a huge difference. Sounds like you should be pushing to start biologics. All the best, Wee Maria x