Psoriatic Arthritis

nikkibikki

Hi, just looking for some advice and/or experiences if anyone has any? About 3 weeks ago now my diagnosis of Psoriatic Arthritis was confirmed on my first visit to the Rheumatology Consultant. I am attending the clinic in Waterford University Hospital (new name for WRH!)

I've had psoriasis since childhood, never remember not having it. Had it on my scalp mainly, get it behind my ears and cleft of bum too. When I was doing my finals in university which was 11 years ago, I developed it in my nails. It's in all my toes now and 9 of my 10 fingers. The toes can be quite painfull and I can't wear nice shoes coz the pressure on my nails makes it very painfull but apart from that, I can deal with the psoriasis, it doesn't bother me a huge amount. I am lucky that I don't have it anywhere obvious like my face or arms.

I have 3 kids, all boys. The youngest are 15 month old twins. It was 6 weeks after this pregnancy that I started getting pain in my wrists and knuckles. That was just over a year ago and was put on Vimovo by my GP in December and referred to Rheumatologist in March.

Saw the consultant, he confirmed GP's suspicions and reviewed a recent blood test that I'd had and as my LFT wasn't great, he wanted me off Vimovo for 2 weeks before re testing LFT with a view to going on Methotrexate. He wasn't entirely happy with LFT so has decided to put me on Humira which I will be starting tomorrow.

Have had a hell of a tough few years, twin pregnancy was really tough on my body. I was fairly immobile but babies are grand and healthy so that's the main thing, they were 6lb 7oz and 6lb 11oz when born at 38 weeks so delighted with the outcome obviously considering I am barely 5ft 1in! I returned to my job in Financial Services when they were 6 months old (hardest thing I ever had to do was walk out the door that first morning) and left that job when they were 11 months old in June. The arthritis was a factor in that decision to an extent. I decided that I wanted to become a childminder and have work secured starting in a month but it took me a very long time to convince DSP that I was a genuine jobseeker and only last week got awarded jobseekers benefit after 13 weeks of waiting. The stress of this has been immense. We were considering emigrating and still might do it.

Since coming off the Vimovo, some of my joints have swelled very noticeably. I've been having trouble with my elbows recently also and my right elbow is very sore and swollen, having 2 babies to lift and carry isn't helping matters!

For those of you who have been on Humira, how long does it take to work and what are the worst side effects you've had? I suppose I am trying to figure out if I will be able to work in a month, having a 13 month old and 3.5 year old on top of my own 3 to look after, my oldest is 6 so he's gone passed the stage of needing to be lifted or carried a long time ago! I will also have another 9 month old to add to that in January. I know at the moment I'd never manage it, I am barely able to manage my own kids and am on Illness Benefit at the moment since last week. Not sure how long my doc will leave me on it for. My mother thinks I shouldn't take the childminding work, that I am not well enough but I need to be earning and who knows when I might get offered another one if I turn these down. I feel so bad for my poor husband too, he has to do a lot more housework than he normally would be expected to do coz of this too. He works 50 hours a week in his main job and has a part time job too some weekends.

I'm just so tired all the time at the moment. Can never get enough sleep, would love to sleep all day but obviously I can't! That's the most debilitating part of this IMO, the fatigue. I'm looking at baskets of laundry here and floors that need sweeping, a dishwasher needs emptying etc etc and I don't have the energy to move. A 20 minute lie down might sort me out but the twins are refusing to nap at the moment so not sure if that'll work!

Sorry for the massively long post, that wasn't planned but did me good to get it all out I suppose. My main worry at the moment is the Humira, how long should it take to take effect and what side effects can I expect?

nikkibikki

And any tips on combatting exhaustion and fatigue would also be very welcome!

up for anything

I too have PsA. I just started Humira (Simponi) after 3 years of no meds since I ditched MXT as being worse than the disease itself. I had my first injection on the 24th Sept. I haven't noticed any side effects unlike the Methotrexate which made me sick as a dog. I just have a few minor patches of psorasis which I can keep under control with Dovobet when I remember to use it.

I haven't any methods of coping with the tiredness which comes and goes for me. I really feel for you though with such small children who need so much running around after and physical care. All you can do I think is make sure that you rest when possible, get as much sleep as you can and eat well. Is your consultant putting you on MXT as well as Humira?

nikkibikki

Cheers for the reply! They may put me on methotrexate as well in time. I baked muffins today and am just exhausted from it, would love to sleep now for an hour!

Just waiting on the second twin to start walking and it'll be easier on my arms! Teaching the one who is walking now to walk to the car/kitchen/bedroom now. One down, one to go but he's showing no interest!

jellybear

I've had PA for over thirteen years and am currently on Enbrel about 6 weeks now. I will share my experience incase it helps at all. I've noticed a huge improvement in my psoriasis, my scalp is practically clear for the first time in a very long time. My joints have not been as swollen however I still have some inflammation and pain if I've had a particularly busy day where I'm on my feet or on the go constantly - I'm a teacher. I'm also on methotrexate and have been very prone to upper respiratory infections so need to be extra vigilant re washing my hands, not touching my eyes, mouth etc to reduce the chances of infection. I've also made sure to get the flu vaccine every year which is recommended for immuno suppressed people. Invest in a good multi vitamin too if you can- boots usually do 3 for 2 offers on them.

Overall it's manageable. I was diagnosed at 12 years old and have achieved everything I've wanted to and never had to change anything because of my condition. Regarding tiredness I suppose it's all about resting as much as possible and knowing your body's limits, easier said then done, I know. I hope things improve for you. Take care.