Hi, I’d like to introduce myself. I am fifty years old and I was diagnosed in May this year but like may others here I know I have had PsA for a long time. My problems started 16 years ago with degenerative disc disease, initially two eroded lumbar discs and stenosis. Ten years ago i developed problems in my right shoulder, two fingers on my right hand, right elbow and left knee and around the same time I had psoriasis on my scalp and both elbows. I had a horrible consultation with a rheumatologist who told me to lose some weight, it would help the bursitis in my knee, exercise more more or less to stop wasting his time. He sent me for steroid injections in my right shoulder, told me I had a frozen shoulder, my right elbow, he told me I had tennis elbow and that all women in their forties had pains!! The injections helped and I have had several more over the years. His attitude really made me feel like I was complaining over nothing. 3 years ago I lost my husband to cancer and during the period of caring for him before his death, I felt pains cropping up in new joints such as my ankles and toes and i had new back pain which showed on MRI to be a slipped verterbrae. My GP said it was fibromyalgia due to the stress. At the start of this year I decided I couldn’t go on like this, I am finding it so difficult now that I live alone to keep up with everything and asked for another rheumatology referral. I was horrified to see it was with the same rheaumatologist who I had seen 10 years previously. This time he examined my joints, discussed my elevated sed rate, asked about my skin and within 10 minutes diagnosed me with PsA. I am relieved! So far I have had methotrexate for 3 months, it made no difference, then 6 weeks of sulfasalazine which I had to stop due to severe liver reaction and now I am waiting for my liver fuction to return to normal before I can start something else. In the meantime I had two Kenalog injections, the first was great, the second didn’t do much. Thanks so much for reading my very long introduction! The information I have found here has been great support.
Welcome minky!
So glad to hear that you’ve finally got the diagnosis, ‘finally’ being the operative word after such a long wait. But I am very sorry to hear of the loss of your husband and the difficult journey you’ve had so far.
It’s funny how people who’ve waited years and years for a diagnosis invariably apologise for a long first post, I understand 'cos you’re new to the site, but I reckon you have been extremely succinct in the circumstances!
I’ll cut to the quick and ask whether biologics might be on the cards given that you’ve ‘failed’ two traditional DMARDs? I guess my view is that aggressive treatment (i.e. aggressive towards the disease rather than particularly hard on the body generally) is so often the way forward, especially when the disease has been around a long time.
Anyways, all the very best to you, looking forward to hearing how things go from here.
Thank you, Sybil for your warm welcome. I am a bit unsure as to the two fails, are the UK guidelines clear as to what constitutes a ‘fail’? I also read that it is usual to be on a DMARD with a biologic, so I was thinking they would maybe perservere with other DMARDS first?
We’re so glad you found us, Minky, and I hope that you will find this a good place. Sadly, reading your profile, I found myself nodding and thinking “Tell me about it!” I too had a very long road to diagnosis, which started with a rheumatologist who dismissed me as “just depressed”, and finally ending with a diagnosis as a result of significant joint damage. During the intervening two decades, I was repeatedly made to feel that there wasn’t much wrong with me that couldn’t be set right by healthy eating, weight loss and exercise.
I’m so sorry about your losing your husband. I was diagnosed immediately following my Mother’s long decline and death, and I’ve always thought that it was that process which finally brought my PsA to a head.
Failing DMARDs is nothing unusual: I got no benefit from methotrexate, sulfasalazine and hydroxychloroquine, and a minimal response from leflunomide. I am now on my second biologic, but I take MTX alongside it to help (they think) prevent my body from rejecting it. If that’s what it takes to keep my biologic working a bit better and a bit longer, I’m happy to continue injecting.
Do you have much in the way of joint damage? Just curious.
Again, great that you joined us, Minky!
Seenie
Hi Seenie, thank you for your thoughtful reply. I totally agree with you that major stress seems to bring things to a head. So far, I have only had xrays of my hands and feet, there is damage in my left foot but my hands are normal, surprisingly. They seem very reluctant to xray my elbows, knees and shoulders even though this is where I have most pain and one elbow is an abnormal shape. I am due to see the consultant next week, I just hope the AST has returned to normal so I can start some treatment.
Hi minky, here’s a link to the NICE guidelines:
https://www.nice.org.uk/guidance/ta199/chapter/1-Guidance
They don’t use the word ‘fail’, the way they put it is that the PsA ‘has not responded’ to at least 2 DMARDs. And the definition of ‘not responding’ is presumably that you meet the criteria for the biologics i.e. 3 or more swollen / tender joints (plus a few more bits & pieces which are more open to clinical judgement).
I see what you mean about persevering with another DMARD in order to find a suitable ‘companion’ for a biologic. They might try you on Leflunomide but as it’s harder on the liver than Mtx it seems unlikely.
Something you might like to ask your rheumy about is whether more frequent folic acid might help with the AST. I stopped Mtx due to long-term raised ALT but stopping made my psoriasis go bonkers. So my rheumy sent me for a liver scan to see if any harm had been done (it was clear) and then we tried taking Folic Acid 6 days a week. Bingo! ALT went down! I don’t think Folic is meant to help with liver enzymes, but I have a new rheumy now & it seems to make sense to her too so my old rheumy wasn’t right out on a limb.
Thanks Sybil, that’s all really useful info! Obviously I am hoping they get me onto a biologic next.The methotrexate didn’t affect my liver, it just gave me severe diarrhea, even in injectable form. My ESR continued to climb so the rheumy decided it wasn’t worth persevering, they never suggested increasing the folic acid. It was the sulfasalazine that caused the trouble with the liver, I am having an ultrasound next week to assess the damage done, but my liver function has come down from 660 to 370 in two weeks so I am keeping everything crossed it’s behaving itself so we can get going with the next drug, whatever it may be!! Thanks again, Sybil.
Oh that’s interesting! My hands are not too bad at all: i have no damage in them, but when I am flaring (or my meds aren’t doing the job) I get swollen joints in my hands. My feet, on the other hand, have sustained major damage. The odd thing there is that the joints that are affected are those of the mid-foot. The usual suspects, the toe joints, are just fine. Go figure. I’ve had two knees replaced, and one hip. My other hip is long past bad enough to replace, but oddly, feels just fine. So I’m keeping it for now!
This really is an oddball of a disease, which can present in so many different ways. Then factor in that many GPs don’t have a clue about it, and (unfortunately) some rheumatologists aren’t much better and you can understand why it took some of us so long to get a diagnosis!
Best of luck with your treatment. I hope you and your rheumatologist make some good, fast progress. It sounds like you’re ready for that!