New to this and would like some advice please

Everydaynormalguy

Hi all I hope someone can help me please , I will try keep a long story short (ish) but iv been suffering with joint pain due to psa for about 6 years , I was working full time and nobody looked into the cause of my pain , every time I managed to get time off work to see a gp they just give me painkillers and that was that , each one put it down to wear and tear even though I’m only 30 lol. I recently had to quit my job as it was getting too hard for me to deal with the pain and exhaustion .I recently see a rheumatologist and he says there is 99.9% chance I have psoriatic arthritis and that would explain how iv been feeling for last couple few years . Im just wondering if some people can share their symptoms with me ? Because My fingers and certain joints swell up and hurt after using them , also my hips after walking and using them are really painful and I struggle to walk , but then some things can hurt after inactivity or randomly ? Is this normal ? As I’m struggling to find the right balance , I understand exercise is good but after walking my hips are really painful , i thought psa pain was worse with inactivity ?

dreamdaisy

I began PsA when I was 37, it was accurately diagnosed nine years later which changed nothing, then osteoarthritis was diagnosed when I was 52. I am now 60 so know a little about it.

PsA is one of the auto-immune kinds of arthritis and is caused by an over-active immune system. Medication is necessary to suppress immune system activity thus controlling disease activity, aiming to slow its spread and reduce joint damage. PsA traditionally begins in the smaller joints of the body but it can affect any joint, causing swelling and pain. Mine began in my left knee, spread to the right and is now in all my toes and fingers. Around ten years after I started a friend began PsA in his fingers, was quickly diagnosed, started one of the many DMARDs and is doing far better than me in that no other joints have been affected. Neither of us have much bother from the skin side of things.

Arthritis of any kind is painful, the hurt is chronic rather than acute. It may ease a little from time to time thanks to rest or medication but it never truly goes for any length of time. What medication has the rheumatologist suggested you take? My PsA is currently trying to flare despite the meds I take, I am feeling far more grotty than usual so that's enough for now. DD

[Deleted User]

Welcome Every Day Normal Guy to the forum.
So sorry to read that you have been struggling with PSA. When you are first diagnosed with a disease it is hard to find that right balance between what you can and cant do without it hurting, joints aching.

Your knowledge is much appreciated DD, its always nice to get experiences from our online community members.

I have attached a link which might be useful to read
https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

Thanks x

Everydaynormalguy

Thankyou dream daisy I’m sorry to hear you have had it for so long , to be honest I haven’t officially been diagnosed yet , he said he was 99.9% sure that’s what I had , then they done an mri on my back and it said no sign s of inflammation so I didn’t need to see him again , a few months later though I woke up with some of my toes all swollen and red and painful , went to the gp and he said casually , it’s psoriatic arthritis . I said the rheumatologist was certain that’s what I had but ruled it out because there was no sign of inflammation in the back , my gp just said it just meant there was no inflammation at the time ,is this normal? I have now been referred to a rheumatologist again at a different hospital For a inflammatory arthritis clinic in two weeks so I’m hoping for a diagnosis , medication I haven’t started apart from the naproxen to keep the swelling down , to be honest I’m a bit sceptical of some of the drugs and the severity of side effects of them , my immune system seems really weak so I don’t think methotrexate and chemo drugs would really be a good idea , for now I’m trying to eat healthy , exercise (as much as I can ) but I see this rheumatologist last year , it seems like it’s taking a awful long time to diagnose , I just wanted to know the cause of symptoms so hopefully I could manage it and get back to work , but it’s been nearly 4 years now and it seems my hips and other joints are are getting worse lol

dreamdaisy

As a recent advert for mental health has said, there are around 7 billion versions of normal; what you are experiencing is your version of normal.

Your body is attacking itself due to your over-active immune system, no-one knows what triggers this event arthritically unlike finding the triggers with, say, asthma and eczema which are also auto-immune inflammatory conditions. Quite why the rheumatologist has not put you on medication is beyond me, the fact your back is not involved is neither here nor there. Taking the meds has never bothered me and never will, side-effects have occurred so the meds have been stopped or changed. I currently inject methotrexate and humira and have no trouble with either apart from occasionally feeling extra-tired: they control the disease but it still tries to have a snap every now and again.

I was born with eczema and developed asthma aged seven, both in the dark days before steroid creams and inhalers had been invented. Life as a child was hell so maybe that explains my nonchalance about the meds.

Gotta go back to sleep. Back later. DD

dreamdaisy

Arthritis of any kind is a permanent house guest, of the two I have I prefer the OA as it is predictable and I can exercise more control. I know it will be aggravated by the autumn and winter weather, if I overdo things or over-indulge in acidic food. My OA does not flare, merely temporarily worsen: any inflammation is localised and dissipates with rest and perhaps some anti-inflammatory gel.

I have no idea what triggered or triggers my psoriatic arthritis though overdoing things and stress are thought to be contributory factors. There is undoubtedly a genetic link as my parents missed the dodgy genes they happily fired into me: Ma donated the asthma and eczema and Pa the psoriasis, neither were troubled by any of that nonsense. When it flares the inflamation affects my whole body and lasts for weeks. This is what is going on at the moment, I feel OK in myself but incredibly tired and weak, that's what it does.

I worked for seventeen years but was lucky enough to be self-employed which helped matters. I am sensibly immuno-suppressed to control disease activity and meticulous with hand hygiene and avoiding ill people. I stop the meds if I do catch a bug but it doesn't happen often due to my precautions. Over the years I have had to stop doing things I enjoyed as more joints joined in so I developed other hobbies and interests to keep my brain engaged which also helps to reduce my perception of pain. I also work with a personal trainer to maintain muscle strength and flexibility to help me with stamina. DD

dreamdaisy

Two thoughts: who prescribed the naproxen and were you taking it when the MRI was done? I've reread your post but can't grasp the chronology of events due to my current enfeeblement.

It is true that meth is used in treating cancers but it is used at considerably larger doses than the piddling amounts we take, for example I inject 15ml into my thigh whereas someone with cancer has anything up to 1000ml, one litre, often directly injected into the spine. The number of cancers which are now curable is increasing whereas arthritis remains incurable.

We live in an age where far too much information is available to people who are not in a position to comprehend it. I've never researched my meds, I don't see the point as I have limited knowledge of physiology, anatomy, the history of medical drugs etc. I trust my rheumatologist as she has studied the subject in great detail but she needs me to inform her about how I am being affected. My friend with PsA does not undestand my experience as his has been dealt with adequately by one medication: different physiology, no history of eczema etc., whereas I do not comprehend his. Just one med and it's stayed in his hands for over a dozen years, I write him off as an amateur arthritic. DD

dreamdaisy

Hello, how are you getting on? DD