Hi, I’m Joy
I received the PsA diagnosis in 2016. I am treated with methotrexate currently - though that is under review because of rising liver enzymes.
I developed back pain and a rash in my mid twenties that were put down to pregnancy. The back pain has persisted for decades.
Psoriasis appeared under elbows some years later, but other than those two occasions, I’ve not been troubled with skin involvement.
In 2012 I developed inflammation in other joints. It was thanks to a clever rheumatologist that I got on the road to, hopefully, management of the psoriatic arthritis, after I’d been fobbed off by another (not so clever) rheumatologist who put everything down to my stressful job, my age and being female.
Thank you for letting me join the group, I hope to learn a lot about accepting and managing the condition.
Glad you found us, sorry you had to seek us out (We say that to everyone but its still true) We have a LOT of UK members who not only know a lot about PsA but more importantly know every trick there is for navigating the NHS. Just ask!
thank you @tntlamb. Been benefiting from some of your knowledge already whilst navigating the site. It’s nice to make your acquaintance
Welcome Joy! As tntlamb says, there are quite a few UK people here including me. I have been doing a fair bit of navigating recently and am definitely willing to share anything I’ve picked up about the NHS and PsA.
Very glad to hear you now have a clever rheumy. The ‘PsA aware’ ones are worth their weight in gold.
Hi @Sybil, thank you for your reply. It’s good to be in touch with people who understand. Looking forward to gleaning information from all of you
My rheumy, sadly, is a locum and soon moving off to pastures new, but I’m glad to have collided with him. I see him on Monday and then, well, I’m keeping my fingers crossed.
Hi Joy, welcome!!
I’m new here too (from New Zealand), have already learned heaps from looking through the threads. Invaluable!!
I’m on Mtx too (diagnosed last year) and have, so far, seen locums, am hoping to see my “real” rhuemy next month.
The locums have been great though.
Looking forward to hearing that you are getting relief
Hi @janson it seems a good place to be and to unite us all across the globe. I will be rechecking the “how to get the most out of your appointment” thread as it is now 16 months since my diagnosis, so they don’t follow up too often here. Mostly I’ve been emailing the rheum nurses when things get too difficult. They are a good team, and I’m looking forward to hearing their thoughts on Monday, will let you know
Hi Joy. There does seem to be an increasing trend towards long waits between appointments. I understand why that is in terms of resources but it’s far from ideal in the early days when really the effectiveness of DMARDs should be assessed over a period of 3 months or so according to NICE guidelines.
I know what a difference a good team can make but best not to be overly positive about how current treatment is working unless you’re really, really pleased with the results. Early on what I felt I needed was a very thorough assessment at those precious appointments!
I’m in the UK too and at the very begining of DMARD treatment. Sadly mxt didn’t like me but I’m tolerating the sulfasalazine fine, now to see if it actually does anything. I’ve complicated issues by fracturing my pelvis too so guess it will take me sometime to know.
I’d always advocate getting yourself to someone who is really, really really interested in PsA as otherwise often you know more than your doctor! Best of luck on Monday, let us know how it goes.
@Sybil - I know what you mean. It’s so easy just to say you are “fine” out of politeness, but politeness won’t give me back any quality of life I now realise.
I’m generally a very positive person, but I’ve been having a shockingly bad time since March when my GP decided to reduce my mtx dose because he panicked over my liver function test levels. I got a massive flare up that’s left me unable to walk at all on some days.
Mostly I’ve had problems on the left of my body since then, including new involvement of my rotator cuff, and a new inflammation in the left ankle and two left toes.
I have even had to purchase crutches
I should make some notes before I go. I have been taking reference photos in case I have a dizzy blonde moment.
@Poo_therapy I had sulfasalazine for a couple of months to start with but I felt generally unwell and breathless on it and so it was changed just in case it was my reaction to it. Last time they were talking of introducing hydroxychloroquine as well as mtx.
To be honest, I’m so desperate I will try anything
I’m sorry to hear of your fracture
Dreading the 50 mile round trip tomorrow. Changing gear is a bit of a challenge now. I don’t even know if I should take my stick in case they think I’m playing for sympathy.
The physio there (the only downer in an otherwise good team) is very dismissive of PsA - in fact I’ve discharged myself from him because he just used the sessions to humiliate and belittle me. I use videos from arthritis research uk to guide my exercises instead.
When I need to use mobility aids (and I don’t use them unless I am desperate), I feel guilty about it - as though I have no right to be in that “club”. The physio single handedly made me feel like some sort of imposter.
Oh dear… need to get my positive head on again!
Joy, welcome to our PsA clubhouse! I groaned out loud (is that GOL?) when I read that
I’d been fobbed off by another (not so clever) rheumatologist who put everything down to my stressful job, my age and being female.
I was hearing that theme for years and years! There was nothing wrong with me that couldn’t be cured with weight loss, a healthy diet, learning to relax, and vigorous exercise. Makes me wonder what they would say to a male patient presenting in the same way you did. I can only imagine!
Great to have you here! Have you noticed, we’re pretty chatty and friendly?
Do take your stick Joy. If you might need it even for 5 minutes you are entirely justified. I too get ultra-self conscious about how I may be perceived at appointments. Yet your whole tone is so measured, please just be yourself and if you’re having a good day - great! But that does not and cannot detract from the bad time you’ve been having which is a very, very significant subject for your appointment.
Plus you are dreading a 50 mile round trip - that’s nothing! Or at least it shouldn’t be but for you it is, again, so significant. This disease can be treated effectively, you have a good chance of much better health which cannot be allowed to slip by. I always think that if I were taking one of my (now grown-up) kids to such an appointment then straight talking and clear aims would be very much easier. Good luck, you sound like a great person, be confident!
Sybil, I do so agree!
A fifty mile trip shouldn’t be such a big hurdle, but the mere fact that it is tells a story all on its own.
Take the stick. It may also give a sign to others that you need a wee bit of consideration – a seat, a bit more clearance, some understanding – and that is TRUE. You aren’t well right now, and you know it. Trust your instincts. There are plenty of us here who learned to trust our gut and speak our mind, too late.
Also re. the reduction in Mtx … I had raised liver enzymes (ALT) for yonks but when I eventually stopped it I had a really nasty psoriasis flare. So what we did was a) I had a liver scan to see if my liver was holding up and it was fine. And b) I started taking more folic acid i.e. one 5 mg tab 6 days a week instead of just on 2 or 3 days. Then I re-started Mtx and with the new folic acid regime my ALT has been just fine too.
I have a new rheumy now and she agrees that maximising Folic Acid helps protect the liver. Might be worth asking about if you’re currently on a lower Folic dose.
And another ‘LIKE!!’ for good measure!
Before I fractured my pelvis I was doing incredible weoll on steroids, despite failing mxt just utterly. Sadly I think I fractured my pelvis due to steroids too. Today I was in a wheelchair looking at gorgeous plants in an open garden. Before that I went or a week’s holiday in the Norfolks Broads in May on a boat with our dog. So just believe it can get better and also it can get worse. And just take whatever positive just today brings. It appears to never stay the same for too long or so I think at any rate.
Walking my dog is also my sanity but for the last 4 or maybe 5 weeks I can’t do so. Hence feeling less than sane!
But I do believe I will be walking my dog again. Absolutely.
And that is proof that something is quite wrong in your body. You look back and realize that you’ve lost so much. But it is reasonable to think that, with aggressive treatment, you can have some of that back again. I say “some”, because after an extended period of inactivity, getting older and possible damage, you may not be able to have it all back without a few limitations. But it is possible that the right treatment will help you be yourself again. That is what it has done for me: I’m back to being myself. I have more limitations than I should have had. Lots of factors played into that: not trusting my own judgement, a high pain threshold, not wanting to be a whiner and complainer, trying not to be vain, trusting a rheumatologist while my gut feeling said “none of this treatment makes sense” … and I could go on.
Being unable to walk or stand for more than a short time (and most of all, walk the dog) is what I miss the most.
Don’t accept half measures and “good enough”. Your goal needs to be to return to being as close to your old self as possible. And it is possible.
@Seenie @Poo_therapy @Sybil
Hi ladies - it was worth the trip. I had an hour with the consultant who is adding in leflunomide to the mtx and a further review at 4 months. He suspects I may be “DMARD resistant” and will be switching me to Enbrel if it doesn’t improve matters. In the meantime another MRI to assess for further joint damage. And I managed the drive despite the swollen ankle