Hi! New member; recent psoriatic arthritis diagnosis

JMckie33

Hi everyone!
I'm Jaclyn, age 33 and I was diagnosed with psoriatic arthritis in March this year. Currently on methotrexate injections as tablets didn't work. No improvement as yet but hopefully things will improve soon. My biggest issue is my knees as both are very swollen with limited movement. I can't walk properly and it's very noticeable.
Does anyone else with PA find 'flare ups' last for months on end with no let up?

I'm new to all this so finding it confusing and worrying. Any info or advice would be very helpful.

Jaclyn

[Deleted User]

Hi and welcome to the forums - there are many members on here and I'm sure you will get the answers you seek,in the meantime please read our leaflet (living with arthritis,link below),if we as moderators can be of any help just ask.
https://www.arthritiscare.org.uk/living-with-arthritis
Al

dreamdaisy

Hello, I too have PsA, I began back in 1997 (aged 37) with a left knee that kept on swelling so I can empathise with your current experience. To cut a very long and boring story short I now take injected meth (15ml) and injected humira (one of the anti TNF medications). I know they are controlling matters because my blood results are good so that has to be pleasing enough.

I am firmly of the opinion that the sooner one is diagnosed and begins the medication the better the outcome could be, I've seen that for myself at rheumatology as people effortlessly stroll in and out of their appointments, not a stick in sight. It can take some time for the effects of the meds to be felt, and it can be very much a matter of trial-and-error which in itself is frustrating enough. Have you not had your knees drained? This was a frequent occurrence for me before the disease was brought under control. To my way of thinking your swelling is a sign that the disease is not yet under control (but I am not a doc, just a patient with years of experience).

I have a history of auto-immune nonsense, I was born with eczema and started asthma aged seven (courtesy of my Mum's side of the family) and very infrequent, small episodes of psoriasis (courtesy of Dad's side). Neither parent had either which was nice for them. The arthritis was undiagnosed for so long that when it was there was no relief as such but some surprise - I had realised by then that whatever was causing the trouble was here to stay but hadn't realised that arthritis was the root cause (I thought that came in two kinds and was only for the elderly, I know much better now).

I hope you find the forum to be of interest - we are a supportive bunch on here and do understand the trials and tribulations because we all face them. It's a nasty and very mis-understood condition but we get it because we have it. DD

JMckie33

Thanks so much for your reply, dreamdaisy! Before I found this forum I had nobody to ask about things as no one in my family has the condition, or psoriasis. It's a God send to have found this as I felt quite isolated, as I'm sure most people with this condition do.
I had my left knee drained when I first saw the consultant end of February and a cortisone injection which lasted about five days. I also paid privately for an injection in August but that didn't work. The consultant there said there was very little fluid by this point, just thickened synovial lining. My right knee only swelled up end of August as my inflammatory markers have continued to rise. Like you say, it's not under control yet but I've only been on the injections for a short time.
Have you been left with knee damage from all the swelling? Also, when the meds start to work, can you tell quite quickly?

Jaclyn

stickywicket

Hello and welcome from me, too.

I have RA rather than PsA but, in terms of treatment, there's no difference. I get by well on a combination of methotrexate and hydroxychloroquine. It's so long since I started on this combination that I can't remember how long it took to kick in but we are told to allow 12 weeks. If you've been on meth, either tablet or jabs, for that time then maybe you should get in touch with your rheumatology helpline and let them know things aren't good. (How are your blood tests?) If, on the other hand, there was a gap between the tablets and the injections then you might need to allow longer.

It's all a very frustrating business and we have to get used to being patient patients :roll:

dreamdaisy

It's difficult to know how to answer your question about damage but I'll go for honesty and bear in mind this is my story so individual, not typical.

When stuff began back in '97 my then GP had no idea what was wrong and, rather than try to find out, kept telling me that things would sort themselves out. Needless to say they didn't. When I started the meds it was too little, too late and I have been left with damage to both knees but, thanks to the meds, they look OK. Both have been under the knife but I have not yet had any replacements. As the PsA progressed I naturally began to move differently thus throwing other joints out of kilter so I have also acquired osteo arthritis, that affects both ankles, both knees and both hips with my knees being bone-on-bone thanks to no cartilage. I have PsA in my toes and hands but they are not damaged and, although painful, the meds have definitely slowed the progress of the disease. The OA is elsewhere too so life is pretty uncomfortable.

I know for a very few auto-immuners the meds work, in that their pain is greatly reduced, their mobility is not affected and life carries on but that has never been my experience. I have a friend with PsA who is controlled on six sulphasalazine tablets per day, it affects his hands and they are beginning to show signs of joint distortion but he is pain-free and still in full-time employment fitting kitchens. He was diagnosed over ten years ago - he had a GP who was totally on the ball, lucky devil! For me 'working' meds means my bloods are lovely but my mobility has been severely affected - I have crutches, a rollator and a scooter so I'm covered for all pain levels. Flares still happen but are much rarer, tiredness can be an issue as my stamina is poor, I go to bed tired and wake tired as restorative sleep is a thing of the past but I am used to things, have made the necessary adjustments to my life to enable me to manage the disease and overall things are not as bad as they could be. I am very lucky in that good health has never been a problem.

Although this dross runs in families it can also start from nowhere - arthritis has no respect for age, gender or the plans we've made for how are lives are going to go. DD

I never found injected steroids effective apart from one which went into my right ankle to treat the OA: that lasted for three months but of course it all came back so now I don't bother with them.

JMckie33

Thanks for the replies. It seems like everyone's experiences are quite different although everyone has the same disease.
That's a lot to be dealing with, Dreamdaisy although it sounds like you've got used to it any manage everything as well as you can. I don't feel unwell or tired at all at the moment but my ankles get sore, my knees are swollen and my left middle finger has been swollen for about 2 years now and is starting to look distinctly arthritic. I'm disappointed that the methotrexate isn't working on its own but from what others are saying on here, it doesn't seem too common for it to work in isolation. My markers are still going up which worries me but hopefully some thing will work in the future.

Jaclyn

dreamdaisy

There have been one or two for whom one drug has been effective but in my view the forum does not reflect that success. The common perception of modern medicine is that you swallow pills and get better but that doesn't apply to this disease, we swallow and inject to maintain our individual status quo and to slow the progression of the disease. It's true that I don't feel ill and, with the remains of my summer tan, I look very well which will please the friends we are seeing tonight.

I learned aged eight that I had a choice: go under or not. I choose not and, even though it is very hard sometimes to get on with things, ceding long-term to the disease is not on my agenda. We on here are all troubled with arthritis but it comes in many guises causing differing kinds of damage, both emotional and physical. Its ripples spread, affecting our friends, family and work colleagues. There are tow articles on the net you may find of interest, The Spoon Theory and There's a Gorilla in my House, both give clear and straightforward descriptions of living with chronic conditions. DD

Hobble

Hi

Recently diagnosed with PsA too and just wanted to say Hi.
This forum has been a god send!

Hobble