Hi all,

I'm Jo, 47 years old in Norfolk UK.

I had a fairly large painful lump pop up on my wrist about 4 years ago so I went to see the gp. I can't remember her diagnosis but she sent me for physio which made it even more painful so was eventually stopped. I was then sent to see a surgeon as it was thought to be tenosynovitis but the week before the op to sort this out the lump completely disappeared! The op was cancelled and I was then sent to a rheumy doc who diagnosed PSA.

I was diagnosed about 2 1/2 years ago and was initially put on methotrexate tablets which worked fantastically to start with, but the dose was gradually increase to the maximum amount as my symptoms returned. I was then put on sulfazalazine but had major nausea while taking this so it was stopped and I just stayed on the mtx.

On my following visit to the consultant he put me onto mtx injections which i was nervous about as I really don't like needles, but a couple of months ago I came off methotrexate completely as the nausea was lasting most of the week and I was getting mouth ulcers etc.

I was then put on leflunomide which seems to be ok apart from really dry skin, a rash of very small pimples under the skin and new areas of psoriasis popping up.

The main issues I have from the PSA are "crunchy feet" as I call them, excruciating lower back pain, shooting pains in most joints of my hands - more often than not this is just one joint at a time, and hands that work when they want to.

I also have a very foggy brain most of the time and can't get my words out properly. I know what I want to say and can see the word I want to say, but just can't get the word out. A lot of other people in the Facebook groups I'm a member of seem to suffer with this so I'm assuming it's another part of this horrible disease.

I look forward to speaking to more people with this horrible disease and hope to find different ways to help with flare ups etc.

Welcome to the group! At least it sounds like you're not having any major side effects from the leflunomide, but it also sounds as though it's not working all that well. If you haven't already looked at the newly diagnosed section, take a look. I realize that you said you were diagnosed a few years ago, but it sounds like you are still in the "gap". When the disease is under good control, activities of daily living are much easier. Has your doctor talked with you about biologics? It sounds like you're failing your third DMARD, so it might be time.

Thank you Stoney, I'll take a look in there :)

I was going to give my specialist nurse a ring tomorrow to ask her a few questions so may well ask her about biologics

Welcome Orchard Jo. I'm glad you found us ! This is a great place to get info and support. I hope you will visit often, ask questions and give us updates on how you're doing.


Hello and welcome. What are crunchy feet?? I'm not sure what I would call my feet. My children call them nasty and gross. Nice kids huh! I have horrible brain fog. Sometimes I am mid-sentence and realize that I am making no sense.

My feet literally sound like the bones are crunching when I stand or walk on most days jhelvey, hence crunchy feet

Hi Jo, welcome, I'm only a few miles away from you just outside Wymondham. I'm wondering if your lump was a ganglion, I had two (one on each wrist) and I was about to go for surgery when a trip to Norwich shopping and lugging all my purchases in two bags got rid of the lumps instantly. They have never come back but then the journey in to PsA began!

Your treatment protocol has been the same as mine and to offer you some hope I, initially, had a good response to leflunomide so I hope this works for you too. It wasn't enough for me in the end and I'm now on my second biologic and waiting for it to really kick-in. Don't be afraid to ask your consultant 'what's next?' if you're not getting anough of a response or side effects from the leflunomide. Provided you have the requiste tender/swollen joints and have failed with two DMARDS you are eligible under the NICE guidelines for a biologic. I've got lots of info on this if you need it.

Totally understand about the crunchy feet, my feet have been bad all along. Earlier this year my whole body went crunchy with dreadful crepitus (cracking and popping) with every movement and it got to the point where it was making me feel sick let alone all the people round me. Thankfully it was about the first thing to ease with the Simponi. Same with the brain fog, alot of us on here complain of that one ..... and the fatigue.

Glad you found us but sorry that you needed to come looking.

Hi Jules,

No idea regarding the ganglion, that was never mentioned. My rheumatologist just looked through my notes and pretty much immediately said I had PSA.

I'm glad I'm not the only one with crunchy feet lol, I can manage with it just from my feet but really don't think I could cope if my whole body made the same sounds :/

Crunchy feet and a ratcheting neck. …