newly diagnosed with psoriatic arthritis

paulajs22

Hi i'm new to this site but wonder if anyone could help with a little advice on how to get your head round the diagnosis, i was diagnosed with Psa in july but still can't get my head around it. i know i have pain and stiffness but my xrays were fine and my RA factor was only 14.7. all my other bloods were normal too. i'm finding the tiredness harder to deal with than anything and can't seem to get myself to take it easy if i need to. when you have something that can't be seen it seems almost impossible to get to grips with, let alone family and friends understanding. HOW DO PEOPLE COPE?? xx :x

frogmorton

Hi Paula
Are you on any meds disease modifying anti rheumatic ones (hydroxy/supha/metho)? if not that might help?
The tiredness is so very hard to cope with I agree.
Once your meds are sorted usually you return to some sort of normality physically.
The other issue is accepting that you do have this health issue when you look fine, there's no damage etc. I think all of us have had to get to that point (or are still getting there ) as it is a hard process. The whole thing can be terrifying and frighteneing and unbeleivable - a whole range of emotions.
I for one bawled my eyes out for days and days and days...this lot helped me to get my head around it.
So I think keep talking and posting - you will get there
Take care
Love
Toni x

paulajs22

frogmorton wrote:

Hi Paula
Are you on any meds disease modifying anti rheumatic ones (hydroxy/supha/metho)? if not that might help?
The tiredness is so very hard to cope with I agree.
Once your meds are sorted usually you return to some sort of normality physically.
The other issue is accepting that you do have this health issue when you look fine, there's no damage etc. I think all of us have had to get to that point (or are still getting there ) as it is a hard process. The whole thing can be terrifying and frighteneing and unbeleivable - a whole range of emotions.
I for one bawled my eyes out for days and days and days...this lot helped me to get my head around it.
So I think keep talking and posting - you will get there
Take care
Love
Toni x

thanks for replying.
yeah i'm on 15mg metho a week. started on 7.5 initially. i had a little relief for a while but it seems to be getting worse again. my rheumy nurse is good and says i can call her whenever. don't want to be a burdon tho. i see the consultant again in feb. he's a little bolder at increasing my dose so hoping he'll push it up some more.
i feel better just having read some of the posts on here. seems i'm not as unique as i thought. lol. some good people here to help me through. do you know if many spouses post?? not sure if it would help my hubby understand more??
thanks again
paula

joyful164

My final diagnosis of Psoriatic Arthritis came 5 years ago now, after what seemed an age being told that I had gout, torn ligaments, and so on.
After two years of different meds, I was finally seen by a Rheumatologist and straight away, he deduced with his little team of students that I had PA. Sausage shaped fingers and toes, swollen feet especially my right heel, my thumbs were swollen and sore. It affects shoulders and elbows too. I was prescribed Methotrexate 10mg, which was in tablet form, but have now it in injection form 20mg once a week.
I finished work 2 years ago now, because I couldn't cope with the tiredness or the pain during work. I think that because I had been hobbling around with painful feet at work for so long, that when the diagnosis was made, no one was surprised. The attitude was, just get on with it.
I think you will find a lot of help and advice on the forum, so welcome. Useful information can also be sought from the Helpline team.
Good luck on the work side of things. If it ever gets too much, just come and we will support you when you want it.

Joy

paulajs22

joyful164 wrote:

My final diagnosis of Psoriatic Arthritis came 5 years ago now, after what seemed an age being told that I had gout, torn ligaments, and so on.
After two years of different meds, I was finally seen by a Rheumatologist and straight away, he deduced with his little team of students that I had PA. Sausage shaped fingers and toes, swollen feet especially my right heel, my thumbs were swollen and sore. It affects shoulders and elbows too. I was prescribed Methotrexate 10mg, which was in tablet form, but have now it in injection form 20mg once a week.
I finished work 2 years ago now, because I couldn't cope with the tiredness or the pain during work. I think that because I had been hobbling around with painful feet at work for so long, that when the diagnosis was made, no one was surprised. The attitude was, just get on with it.
I think you will find a lot of help and advice on the forum, so welcome. Useful information can also be sought from the Helpline team.
Good luck on the work side of things. If it ever gets too much, just come and we will support you when you want it.

Joy

thanks joy.
so far no problems with work. thank goodness. i'm a practice nurse so i'm hoping if it ever gets too much they'll be supportive.

dorcas

Hi Paula! nice to meet you ':D'

I too have PsA diagnosed 13yrs ago after a year of tests etc.

Gone though various meds but currently on Anti TNF, Humira and Mtx combo plus usual pain killers. Have had some surgery due to PsA and having a bit more this year..

It does take time to come to terms with any long term illness; feels a bit like a bereavement with all the different emotions you go through, and it is, I agree, really difficult when friends, work and family can't actually see what's going on.

I hope you get the proper meds..your consultant sounds a good guy!

Everyone here on the forum is so supportive, and are here for you for the bad and the good days! Iris x

psyart

Hi Paula

sorry not written on your post before so hoping you read this, but in the middle of moving so life is so upside down at the moment!!

I was diagnosed with PA over 3 years ago, so am a baby really to this!! But I did feel that I was being fobbed off until I spoke to my doctor, as my bloods are normal, I only have slight swelling, xrays are normal etc, but he said that they go on what I told them as well as what they can see!! I'm on 15mls of injec methx and co-codomol and tramadol at night, but I had to give up full time work due to crap manager and not coping with illness and stress!!! I agree with the above comments really, its a long process, its hard, you will cry, you will feel guilty, you will wonder why!!! but this forum is the best place to voice your feelings - at any time day or night!!!! there is a link on the chit chat forum for night time people!!! It is a day to day thing though - as I have been adviced by lovely people on here when I was having bad times!! It also helps if you have a good rummy nurse - and they are there for you so if you feel you need some advice ring her!!

hope to see more of you on here!!

Louise

scarlett

Hi Paula,

Nice to see you, I too have PA and have been diagnosed for about 10 year, and 41 and used to be an RGN in theatres but took the decision to get rid of some unnecessary stress and now work as a receptionist/pa in a small company.
It's hard coming to terms with things that you find you can no longer do and the tiredness is something that you can't explain to anyone. You have to go with it and rest and sleep when your body tells you too, the more you fight it the worse it gets trust me!!
Methotrexate does take a little bit of time to kick in and I am on 15mg by injection now but you may find a small increase is needed.
Hope all this helps

Scarlett

milmandy

paulajs22 wrote:

Hi i'm new to this site but wonder if anyone could help with a little advice on how to get your head round the diagnosis, i was diagnosed with Psa in july but still can't get my head around it. i know i have pain and stiffness but my xrays were fine and my RA factor was only 14.7. all my other bloods were normal too. i'm finding the tiredness harder to deal with than anything and can't seem to get myself to take it easy if i need to. when you have something that can't be seen it seems almost impossible to get to grips with, let alone family and friends understanding. HOW DO PEOPLE COPE?? xx :x

Much sympathy. I am struggling withall the same issues of how I feel not showing up in bloods and x rays..not having anything measurable to show for how you're feelingis weird and frustrating. I still haven't been given a definate diagnosis of PsA ( 3 years on)because of the above , Dr says it is all just a name when it comes to it but sort of makes it more diffuclt to explain. Just go on trying to be the real you and know that others undersatnd.

joyful164

Hello Paula
Wondered how you were feeling now. Do you feel you have found any answers?

I've just come on site and read your reply. I'm glad you will get some support at work. Very important. It was very much a case of "Oh, I've got that, I manage, I don't take time off" sort of thing.
I got fed up with it in the end and with only 12 months to retirement, took those 12 months as sick leave. My mind was in such a whirl with all the hospital trips for this that and the other, it wasn't worth me trying to get any work done.
Anyway, I'm just on my way to have a bath and bed after a day on a hospital bed myself. Had a colonoscopy today and they found a couple of polyps, which will go some way to relieving a very bad back and cramps. Felt like I was giving birth every time I went to the lou. I had some polyps about 13/14 years ago I think it was and didn't expect to have any more. Anyway, recognised there was a problem again, gp agreed and now sorted. Feeling very bruised and maybe, about 8 lbs lighter
I started with MTX in tablet form but my stomach was not dispersing it correctly into my system (stomach ulcer and hiatis hernia (yes, I have got a lot of things wrong don't i?) So I went on to injections. I am on Tramadol SR so I don't take co-codomal anymore. It does take a long time to get meds right for you. I find it good that I don't take any other painkillers except the other day when I had to have some morphine prior to having the op today. Since having PA diagnosed went on to have RA diagnosed and then OA just recently. Oh yes, and bursitis of the hip. Never ends does it?

Anyway I have gone on too long

Again good luck Joy