Psoriatic Arthritis - new diagnosis

Lskinner84

Hello everyone,
I am new here, only recently joined as I was looking for some advice/support.
I’ll keep it as short as possible..
For 15 years I have had sacroiliac joint pain, causing pain & problems.
I have suffered for 8 years with stomach issues, undergone every test with a diagnosis (recently) of Crohns Disease.

13 months ago, I developed swelling in my right hand (in particular the fingers). This progressed to the right hand, into both elbows and now after 13 months is in my shoulders, ankles and feet.
I have just been diagnosed with Psoriatic Arthritis, in the last week.

I am trying to get to grips with this diagnosis and am due to discuss further with my consultant in person.

I understand it varies from person to person and appreciate this but the more I read, the more I get a little anxious that I seem to have multiple conditions relating to Psoriatic Arthritis and feel somewhat bleak about my future. I seem to be one of these that does not have the skin issue of psoriasis at present.

My husband and I recently married after 10 years of engagement and I know this affects him too.
I have already stepped out of one career because it was to physically demanding, I stepped into a new career which is less physical and not what I wanted and I am now faced with the reality that my time may be up there also.

I was signed off for the last 12 months, since February, I have fought to get back to work (as I wanted to at least try). I went back on Monday on a really reduced working pattern, meaning this has further financial implications and Thursday, I had my diagnosis.

I meditate, so I am counting my blessings for my mental health at the moment but am very fearful for the future.

Any help/advice, would be greatly appreciated.
Take care

Aj_x

Morning Lskinner84

Welcome to the Online Community Forum am pleased that you found us.

I'm sorry to read about your recent diagnosis of psoriasis arthritis. Its good that you haven't got long before you can speak to your consultant about it all. For the time being it won't do you any good if you Dr Google. Here is the link for the Versus Arthritis Website which you can look things up, this will be your better option https://community.versusarthritis.org/

I have also listed the Helpline phone number as I know just reading non stop can make your head go in sane 0800 5200 520

When you first got diagnosed the Crohns do you remember how you and your husband felt? Didn't think you was going to get through it? But you have, and it is the same for this.

It is a recent diagnosis so everything is going to be new to be you both and your not going to know what is happening, why its happened etc. You just have to remember one thing that you have each other. Take one thing at a time. I know you are worried about everything that comes with it like your financial support but after speaking to your consultant you will have a better idea on what is happening then there is people you can talk to regarding financial.

Here is the link for the work and financial forum on this website there might be people in the same situation or might be able to give you advice on where to turn to next https://community.versusarthritis.org/categories/benefits-and-working-matters-forum

Hope everything with the consultant manages to answer some of your questions and you are able to understand it all or at least some of what is happening. Please come back and join us again on another forum or this one.

Take Care and Stay Safe

AJ_x

dreamdaisy

I did a long reply, then at the time of posting my interweb failed. Potted version as fingers are bad.

Born '59 with eczema, an auto-immune i flammatory condition.

Summer '66 began asthma, another auto-immune inflammatory condition.

April 97 left knee began swelling.

July '97 got married. Still very happily together as the disease only affects my body,it will not change my character, attitudes or outlook.

February '02 op to remove solidified swelling. Began sulphasalazine (the first od many meds) even tho rheumatology thought I was orthopaedics problem. Turns out I wasn't.

Oct '06 Pustular psoriasis appears on palms and soles, hurrah, it's PsA.

April '11 OA diagnosed. Sacro-iliac troubles became more noticeable.

PsA is now in all the places it s meant to be. What a jolly jape to start in the wrong one.

Many on here have more than one auto-immune inflammatory condition to deal with. The meds for the PsA prevent the eczema, reduce the psoriasis to virtually nil and reduce the asthma but flares still happen. They don't affect the OA. I was self-employed from '95 so that was a prescient blessing: being an unreliable boss is far better than being an unreliable employee. Disease activity currently well controlled by meds, my activity currently curtailed by OA and pollen. DD

Lskinner84

Hello Aj_x & Dreamdaisy

Thank you very much for your reply, very kind words and support. Thank you.

The Crohn’s disease and this were diagnosed at the same time, although it has been years that this has been a problem.

As the consultant explained, there are a lot of links, this being one of them. I am just taking it all in at the moment.

Definitely not playing Dr Google, as I know that does not help. I’ve been through the resources on here and just like the idea of the community.

I’m 34, so having had the back problem since late teens, the back & stomach problem persisting for years (chronic pain) and now finally I have the diagnosis that explain it all.

On that hand, I am positive about certain things, it was just not what the previous professionals suggested.
I am being out on a treatment for the symptoms, on top of the previous medication and trialling treatment for the overall diagnosis once I can get on it.

Thank you again for all your words and advice. X

dreamdaisy

You're welcome, I hope others contribute too. A sudden thought - do you have a family history of auto-immune stuff? My parents dodged the genetic bullets which they happily fired into me instead. Ma's side donated the asthma and eczema and Pa the psoriasis but the immune system is far from understood: it can revolt completely out of the blue. DD

Lskinner84

Apparently yes!! All Mums side, Grandad and Mum has/have psoriasis, Plus other auto immune.
My sister was diagnosed two years ago with an auto immune cancer too so the genes are definitely corrupt!
Good job we have some looks in the genes, or else I’d be screwed! 😂

dreamdaisy

I am pleased that by the time I was sixteen the understanding of the part genes play in determining health was underway. My Ma was adamant that if she had had her time again, and known what was being passed on, she would still have had me which I find astonishing, definitely it was all about her wants. Interestingly her two sisters were also fine, as were their children (my cousins) but a number of my cousins' children have been affected by asthma and eczema. I know these things are not guaranteed but they will continue to hit future generation due to predisposition.

One of my Pa's brothers emigrated to Florida in the early 70s and made his fortune. He spent the lot on his medical bills for PsA, he had the all-singing-all-dancing version like the Singing Detective. At least we have the controlling meds now, they are a blessing. DD