34 and diagnosed with Psoriatic Arthritis

gary1234

Hello everyone,

I'm 34 and about to be diagnosed with Psoriatic Arthritis, follow up consult is next week but consultant told me he is fairly sure it is PA at first consult.

It is mainly affecting my feet, with walking extremely painful, so much so that I'm having to use a crutch at times to get about, especially first thing in morning. I also have some back pain.

I'm pretty fearful of progression long term, especially if my hands become affected, but also somewhat hopeful that long term treatment may help me

To that end, I was hoping to understand how folks have got on with things like DMARDS and biological treatments, do they reduce the pain through time? How risky is it if you get the flu and so on?

And I suppose also if folks have any advice on what I should be asking my consultant on the follow up appointment.

It's all very overwhelming and pretty crap to end up landed with a chronic condition at 34, so just trying to be as informed and prepared as possible.

Dannii28

Evening @gary1234,

Welcome to the Online Community Forum, glad you have found us, there is lots of support available. I have added a couple of links below for you to have a look through:

https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

https://www.versusarthritis.org/about-arthritis/treatments/drugs/disease-modifying-anti-rheumatic-drugs-dmards/

Please do take a look around some of the discussions as you may find someone in a similar situation to you.

Dannii (mod)

jamieA

Hi @gary1234

I'm a lot older than you - I was diagnosed with PsA at 65 in 2020 during the pandemic - so I don't know how relevant you'll find my experience. Initially my shoulders, hands, knees and right foot were affected. I won't lie I spent a bad 10 months from November 2020 through to September 2021 as I progressed from sulfasalazine then methotrexate was added then adalimumab biosimilar Amgevita was added in July 2021. By September 2021 the combination started to work and I was able to hand back my crutches and by 2022 I was able to stop regular painkillers - I only need them on very few occasions now. I'm not cured by any means but I'm a great deal more functional than I was. At present the worst affected areas are my hands, knees and feet. I've been diagnosed with metatarsalgia in my feet - who'd have know that was a word! My lower back is sore a times - just below the waistline on the right side and my rheumatologist says that's because PsA affects the sacroilliac joints which connect the base of your spine to your pelvis.

I was previously a quite fit and healthy retiree - DIYer, hill walking with my dog and amateur photography. I'm now back to walking my dog 50-60kms a week - but not on the hills. I can't do much in the way of DIY but I'm slowly getting back to using my camera. When my rheumatologist now asks my level of pain in comparison to my worst times - worst being a 10 - my last two responses have been 1-2.

If there's any advice I'd give is don't be a passenger in dealing with medics. I found I needed to be more forceful than I would have liked to get them to understand the situation I was in. Ask to be referred to physio if you haven't already. I also got referred to a rheumatology podiatrist and occupational therapist as well as a pain clinic consultant which all helped.

I hope you start a treatment that works for you soon.

gary1234

Thanks for the reply Jamie, all very useful advice, very much appreciated

stickywicket

Hi @gary1234 . I don't have PsA but have had RA since I was 15. I won't say life has been easy but it has been good.

I was lucky in that my first DMARD, methotrexate, worked well for me though they did also add hydroxychloroquine. Some have to try several to get the one that's right for them.

If the foot difficulties persist, ask to be referred to an orthotist. They can get you custom made insoles and even shoes if necessary. Meanwhile, wear supportive shoes (trainers are usually good) and don't slop around in old, saggy shoes or slippers. Check out the foot exercises on here. It really helps to keep muscles working. but go gently - very gently at first - and build up. Good luck.

N_Corsini

https://community.versusarthritis.org/discussion/60420/34-and-diagnosed-with-psoriatic-arthritis

Hi!

I’ve had a similar experience. I am 26 and I was diagnosed with PsA last year. I was limping alot and I suffer with finger joint pain which has now gotten worse, also severe back pain and flare of my skin psoriasis too.

My first treatment was methotrexate 15mg tablet form with folic acid and I did not react well as it caused severe nausea so they changed me over to metoject 15mg and then increased to 20mg as symptoms continued. I am now on metoject 20mg and sulfasalazine and still no luck.

I was advised previously that if symptoms continue with no improvement, I need to have trialled 2 separate DMARDS before being screened for biologics. So I will soon be going forward with this.

my main advice would be to ensure you utilise your rheumatologist. I am always told by them that if I have any questions, to call the rheumatology nurses and more often than not, I get a response within 2 days. Don’t be ashamed to have 1000 questions, I definitely did. It is not easy to navigate a life changing diagnosis like this so take it easy and each time you think of a question, write it down and take them with you to your appointment.

I work as a special needs teacher so getting sick was definitely a fear of mine. A common cold hits me quite hard, i also had a virus for a few weeks but I have been able to work through most illnesses after a few days off for rest. It will affect people differently though.

wishing you all the luck 🙏🏼

noddingtonpete

Hello @N_Corsini and welcome to the Community. We are a friendly and supportive group and I hope that will be your experience as well.

I understand that you have Psoriatic Arthritis and very good advice about contacting the rheumatology team with any questions. I see that you are looking to be prescribed biologics as the other treatments are not doing the job. I hope that you get some meds soon that will help you. Have a look at the following from our website as well as the links above.

https://www.versusarthritis.org/about-arthritis/your-experiences/your-questions-answered/your-questions-on-drugs-and-specific-conditions/

Also, once you know what biologics you are going to be prescribed please search our website as we have info on most of them.

Please keep posting and let us know how you are getting on.

With very best wishes,

Peter (moderator)

Flacky1970

Hi , like yourself I was 35 ( now 52 ) when diagnosed. First piece of advice is be brutally honest with the consultant about your symptoms , I bring a proud male tried to fight it for years and ended up in a very dark place , one of the biggest frustrations is most people cannot see the disability - ignore any judgement and if getting down scream for help - took me 27 years to do so but best thing I’ve done

now on second biological and. Whilst struggling you can get good periods too

my great love is golf and on the back of councilling last year I brought a single seater sit on buggy ( handicap now 8 ) it was the first visible thing people not close to me saw ( got some crap comments ) but remember those who are close will look after you

moral of this message

, there will be times you feel sore , angry ( my main one ) and down - don’t hold it in like I did , the good will also be there and focus on that - hope all goes well 🙏

Nannyk

Hello Gary I am also a lot older than you, but remember I was not diagnosed until I was 38 having had so many visits to GP's for at least 10 years before that! By that time the damage to my joints was irreversible unfortunately. My main advice is keep yourself moving, listen to your body, if you are aching then have a rest then start again. Listen to your Rheumatologist, the treatment is so much better now I think you will find it will get easier. You do need to know a lot about your medication before you decide, you have to weigh up the pro's and con's. I wish you well, keep a sense of humour. I am still moving many years down the line to you! There is hope!!

Ellen

Good morning @Nannyk (@gary1234 apologies for hijacking your post to welcome NannyK)

Lovely to meet you and welcome you to the online community.

It's always lovely to see someone's first post being in support of another member.

Thank you for sharing your experience. If there is anything you think people can help you with please do not hesitate to ask. As you can see this is a very friendly community.

My best wishes

Ellen.

Weeyin

https://community.versusarthritis.org/discussion/60420/34-and-diagnosed-with-psoriatic-arthritis

Hi there, lm Maria. I was diagnosed with PA aged 24, lm now 50 & have OA too now in my hip. PA started in my wrist 1st, probably because l was a Potter, other joints affected are my fingers, shoulders & lower back mainly for 25 years, had to give up the pottery as too tough on joints. I have been on adilimubub for around 10 years, its pretty good although lm still in chronic pain everyday. To manage this l use a combination of tramadol, Tens machine (fab) & a skakti acupuncture mat. I am still able to work & do 33 hours per week in admin. I'm determined PA will not ruin my fun so still go to loads of gigs. A combo of rest & movement, stretches works best. Basically it's trial & error for meds & pain relief. I would encourage you to try as many as you can to see what works best. Good luck

gary1234

Hello everyone thank you all for the responses, very much appreciated

Macdee73

Hello @gary1234

I am 34 now and was diagnosed with post-traumatic osteoarthritis at 28 which was 5 years ago. From my experience with OA I also was in that state were I wanted to have all the answers. I worried about the progression as well maybe that's why I had enxiety and depression.

My advice to you is to take one day at a time. Don't worry about the progression now but rather focus on finding medications and routines that work for you. Try and get to know your condition better. If you get to manage your day to day life I Believe you will in time manage the progression in the future. I have done that also. I am always in pain but I know the kind of pain I must sleep and take a brake, same way I know the amount of pain we're I can continue with my day to day activities.

Trust me it's not an easy road but once you get the hang of it you will push through.

Wishing you the best

Macdonald