Psoriatic Arthritis and under 30

Catage29

Hello :0)

I'm 29 and was diagnosed with Psoriatic Arthritis when I was 17. Since then it's gradually been getting worse. I am now on Methotrexate and self injecting Humira. I've also in the past been on Infliximab (infusion) and went into hospital often for the treatment.

I would love to chat to anyone who has Psoriatic Arthritis or anyone who has has it quite young. I just can't really chat to my friends as they totally don't understand the pain level or my tiredness. Would also love to hear your tips on how you cope daily with work and the tiredness... do you get tired easily or is that just me?!

Would love to hear from anyone :0) thank you.

Catherine.

mig

Hi,Welcome I have ra so I can't offer any advice but there are folk on here who do I'm sure they will be along soon .Mig

stickywicket

Hello Catherine. It’s good to meet you. I’d just read your post on the ‘hello’ forum and was going to reply there but, seeing as you’ve made it over here……

We have quite a few people with PsA, of all age groups. Mine is RA but they’re similar in many ways and so are the treatments although I’m lucky in that mine is controlled just by DMARDS in pill form.

I was diagnosed at a young age too (15) but that was over 50 years ago. I don’t think others can grasp the pain levels and tiredness whatever age they are but that’s hardly surprising. Which of us does really understand any illness until or unless we suffer from it? If you try googling ‘The Spoon Theory’ it’s a good way of getting over to others how arthritis affects us, especially the tiredness factor which is definitely part of the disease and not just you. In fact I think you’re the third person today who has mentioned the fatigue and asked how others handle it so you’re definitely not alone.

Just rest whenever you can to replenish your energy, eat a healthy diet (not junk food) and keep taking the meds (which, unfortunately can also add to the fatigue :roll: ) Oh and keep talking to us because we do understand even when we can’t actually help.

Soretoe2

Hello Catherine, Sorry to hear your PA is getting worse. Unfortunately I am not young but was once!
I developed what was called Still's Disease in the old days (RA) after contracting Rheumatic fever at age 3. I then developed extensive Psoriais at age 8 and no one could say if is was true PA or just Still's with psoriasis.
Had a dreadful time with it for over forty years but then it all seemed to settle down a bit. By then the Osteoarthritis/nerve damage had settled in all my damaged joints...can't win can we?
One of the biggest problems with any inflammatory disease is the sheer effort everything takes. The tiredness being a huge part of it.
It is difficult for others to really know how shattered we are most of the time, despite telling them and showing them blogs etc; Pacing is the answer and being brave enough to say occasionally that we can't do this or that today but tomorrow may be better.
Stickywicket has mentioned rest , good diet etc; absolutely necessary. An afternoon rest can make all the difference to getting through the day.
I Hope some younger people contact you. Just wanted to say that despite it all many of us are still around 50/60/70 years later (to my surprise) and somehow we get through it all. Good wishes, Joy

Susiesoo

Hello Catherine

I'm afraid I'm not young any more either, but I just wanted to say hello. I was diagnosed with RA just over a year ago and I can honestly say that this forum has been such a help. I know nobody else with this disease and to be able to talk to or read about people who understand has made a huge difference. There is so much friendly advice, tips and support to be had and it really lessens the feelings of isolation. It's nice to be able to ask (almost!) any question and get an understanding response.

I'm sorry things are getting worse for you. I wish you well and I hope some "youngsters" will soon be on for you.

Best wishes, Susie

Catage29

Hello everyone! Thank you for all your messages. I think I'll be on here loads from now on!

I'm so glad I'm not the only one who feels so tired. When I can I have a snooze in the afternoon for 20 mins or so.... but not so easy when you're working :0(

The Humira is fantastic. I feel really lucky to have been given it. My Specialist Doctor and Nurse are brilliant. I can contact the Rheum. nurse at anytime and she'll book be in straight away.

I've just today gone on a real healthy eating plan to help. I've also read that Tumeric and Cinommen (sorry can't spell that!) have some natural anti-inflammatory qualities. I'll try anything! Have any of you found anything natural which you feel has made a real difference?

Catherine x

Tubby

Hi Catherine
I have Psoriatic Arthritis but I am in my mid 40's so can no longer empathise with the young thing! I too feel exhausted lots and have to plow through it as I am in full time work and then some. If the tiredness hits and I am not in a meeting, I take myself off for a few minutes and stare into space. Some days it isn't easy as it is difficult to concentrate with the pain, tiredness and what feels like a million people trying to talk to me. The temper gets a little close to the surface - something which never happened before the PsA.
I am on methotrexate but I think it is only just starting to get up to strength with me (the medics are upping the dosage as we speak).
Keep smiling (grimacing) and talking to us!

Tubby

scorpio

Hi there, i am now 35 and was diagnosed with Psoriatic Arthritis - i have it in most joints and was bed ridden for half a year as my knee was so swollen i could barely walk.........my psoriasis covered my entire legs, and groin (that was fun i can tell you) as well as my entire scalp, all my nails grew upward, my palms and hands, elbows, knees and i had huge patches on my back and front,,,to say i was depressed is an under statement........tiredness is a biggie as i cannot be bothered to do anything and before the PA i was mobile and fun loving, so i know exactly how you feel -
I am now on Humira, am totally clear of arthritis and psoriasis (apart from a few finger nail sized patches and the very odd achey day) and i have started mountain biking, so fingers crossed it is more permanent - my specialist is wonderful and says i respond well to the drug and within 2 years a tablet form will be available............My name is Chris and i am happy to speak any time - life will get better, i put on 5 and a half stone in weight through this b@5t@rdised condition and felt robbed of my life, but i have lost 18lb's now and WILL get back to a close proximity of where i was in my early 20s

hope you are well, love Chris

Colin1

Hi Catherine welcome First of all cant believe how well chris is doing well done. Catherine im a bit older than you you bus sufferd with PsA and RA for years Like you have been on most of the meds now on Rituximab, methotrexate and Prednisolone I had a break from the skin side of things about 8 years ago when i started Methotrexate it cleared my skin for about 18 months and although not as bid it returned and i'm back to creams and magic spells i just dont let it get on top of me but treat it most days so that it doesent become flakey. Pain is another matter when i first started i could not get it under controle and spent a couple of years in and out of hospital. then about 8 moths in bed at hame. It was from head to foot along with the RA. I just decided i was going to get on with my life got out of bed and tried to get on with things. The hospital gave me an electric wheelchair and i bought a mobility scooter. At first i needed my wife to be with me but now i'm out and about on my own if i want to. I cept up exercise although i have the wheelchair i can walk about the house or garden Its not a pretty sight as i tend to wobble aqnd do that sort of penguin walk but hey it keeps me going. I used to take lots of pain killers but got liver problems so now i just cope. some days are really bad and i have to take the pain killers but if i can manage without i will. I imagine because you have had it for a long time your a coper to and just try to get on with things. It can be a bitch at times as you know and there are those days its hard to face but we get through it. You must be a very strong person
i do hope you stay around the site many people come and go without even leaving a reply. This forum has done lots for me ans some of the people are quite insperational, at time when your really down you come on hear and the next thing your giving out advice or sharing advice and things. I know when your bad no-one else is as bad as you and at times people say i know how you feel NO THEY dont they cant because they dont even come close to understanding. But the people here do. Do you have friends call and you feel so bad you feel like your dieing and they say Catherine you look great today and you think to yourself B----KS but you so oh thanks people just cant see your illness it doesent stick out like a lost limb or lump so people just dont realise. Well i could go on for ages but feel i'll just bore you, i'm sure you know all this stuff anyway, Just keep on copeing Catherine one day things will get better like Chris. I wish i had a magic wand or coulkd cast a spell to make you better.
Colin

Catage29

Hey everyone. Thank you for your replies.

Chris I'm so glad you're doing well. It's great to hear that. Do your injections sting?? Mine do. Luckily it doesn't last long.

Hi Colin. It sounds like you've got it very bad. Mine currently is under control but I try not to take that for granted as very often my meds will just stop working for me. I'm so glad you go out and about though and don't let it rule you. That's so important. And I hope you get DLA too. That would really be helpful. I tried and got turned down. When I get really bad again I will try again as keeping two jobs with this isn't easy. And my mortgage just went up.... grrrr!! Still we much smile. I'm lucky to have a good family and boyfriend to look after me. Hope you have that support too. Sounds like you do from your wife.

I wish I could find a magical cure for it somehow. I don;t think people truly understand the pain, not even the Specialists. Keep in touch though. Would be great to hear from you again.

I'll try and come on here every so often. :0)

Catherine.

dreamdaisy

Hi, I have PsA too and take humira and injected meth. I take the humira out of the fridge about 30 minutes before I inject and it doesn't sting too much, sometimes not at all if I hit lucky and miss a nerve! I do it in my stomach as it has fewer nerve endings but not too close to the navel, apparently that's not wise. DD