Anyone here with confirmed PsA?: Would like to ask... - NRAS

NRAS
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Anyone here with confirmed PsA?

Brychni
Brychni

Would like to ask about symptoms.

13 Replies
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Yes - I have A confirmed diagnosis of PsA. My symptoms generally tend to be intermittent flares when I have a distinctive and intense pain in my ankles and knees that painkillers don’t touch. It usually starts in one joint and sometimes moves to another, eg one ankle, then opposite knee. Thankfully, I haven’t had a flare for going on for 3 years once I got started on methotrexate and now switching to Sulfasalazine. Psoriasis affects the palms of my hands and the my feet only, again, controlled by mtx, and regular moisturising.

From what I’ve read here over the years, different people have different experiences, but hope this helps.

Unfortunately yes. I suffer mostly from joint pain mainly in feet, ankles, wrists and hands. Before I started treatment my fingers were badly swollen. I take methotrexate and sulfasalazine which has helped the swelling but joints do feel stiff. However still getting regular flares so I'm on a short course of steroids and once I can get a face to face appointment they have talked about adding a biologic. I suffer from fatigue and some days I just feel generally unwell. Also I don't have psoriasis.

Same. Plus spine problems that may or may not be related to PsA.

Suspect I've developed some mild psoriasis in the last year or two, since starting biologics, but still not confirmed. Family history of psoriasis though.

Hope you can get on biologic. I initially found Humira amazing, life-changing, but after a break due to covid I've had another bad flare.

Yes diagnosed 15 years ago, is it any symptoms in particular?

I dont have much toes/hands involvement, mainly my knees,ankle, wrist, flu like symptoms I'm on mtx injection & leuflunomide after a few failed dmards. I have the occasional flare up. Hope this helps 😊

Hello to Soreknees, Pinkypie and Dreamer - thanks so much for your replies. My diagnosis is Undifferentiated Inflammatory Arthritis and I understand that PsA could be one diagnosis. I have been prescribed hydroxychloroquine about 8 weeks ago although it hasn't done anything.

I've said before, so apologies for repeating myself, that I'm shochked by how quickly my symptoms have progressed since being diagnosed. Every time i look various pains up it points more towards PsA rather than RA:

I often get pain in the angle of my jaw which radiates into the top pf my jaw and makes it difficult to open my mouth and twice now it has gone into my right ear - pain is severe.

Also the other night I had excrutiating pain emanating from my left shoulder blade into my chest and down my right arm - I though I was having a heart attack.

Lower level pain and more fleeting in my wrists and now my ankles, front back and sides. My feet feel 'solid' all of the time and the right foot is tender.

the fingers on my right hand are always slightly puffy and bigger than the fingers on my left although I have intermittent pain in all finger joints especially my little fingers which are really painful and permanently enlarged in the joints. One or two toes are similar. the soles of my feet hurt in various places and sometimes it feels like I am walking on pebbles under the first joints of feet. I also get real tenderness around the rim of my heels.

In addition I have had, although not for a while, serious pain in my neck and top of back and when it was bad it gave me a flu feeling that would go o for days. I also get really bad sharp pains in sacroliliac joint and coccyx (had that as a child too although it was dismissed). Strangely I don't get pain in the middle of my back.

My right knee has been bad and puffed up like a football a few years ago - no pain or redness just puffed up! Now both knees are bad and on the left I have really bad pain on the outside of the knee just below it, find it hard to bend my leg and this is starting on the other one as well now.

Also my elbows, mostly the right one, painful all over, most of the time.

My wrists are really weak, normally I don't drive as my husband is doing all the shopping during lockdown but I've been down with him to the local shop and drive and it I'm horrified by how achy my wrists feel just operating the steering wheel.

I'm not sure if I should report all this to rheumatology or if I should wait for my next review/appointment in about 4/5 months.

Have any of you taken hydroxychloroquine and did it help?

any advice.

Thanks

Crikey, you’ve really got a lot going on and I sympathise with you. I would certainly recommend contacting the rheumy as soon as possible - 4/5 months is way too long, and there’s no guarantee that appointment won’t be delayed.

I haven’t tried hydroxychloroquine, but if it’s not doing anything for you at this stage, perhaps it’s time to flag up with the rheumy - have you been offered any pain relief or steroid jabs to help with the pain in the meantime?

One point about PsA that I forgot to mention is changes to your fingernails - apparently vertical ridges and pitting are telltale signs, and certainly my nails are very ridged, and a couple have been quite badly damaged by the psoriasis.

I really hope you get some relief soon. 🤞🏻🤞🏻

Hi Soreknees - I am not in agony all the time though, I just feel that it's getting worse at a very fast pace. Yes I have had a few really awful episodes but they come and go. Some of my sore points only happen in certain positions or if I bash them. for example the joints in my little fingers only occasionally ache by themselves but if I touch them or knock them the pain is pretty bad.

If I had to pinpoint one thing it would be my wrists: they have become very weak and sometimes ache and sometime sting. This has happened very quickly. When I spoke to Versus Arthritis they said that hydroxychloroquine is not prescribed for PsA so I suppose if it never works for me then it means it's not RA but PsA?

KittyJ
KittyJ
in reply to Brychni

Brychni hydroxy took a good few months to do anything for me so you still have a chance for it to improve things. ( I don’t have PSA)

I was never offered hydroxy but these drugs prescribed to us do take a long time to work. It can take 3-6 months unfortunately. But you do seem to be in a lot of pain with many joints involved so I would definitely log a call with your rheumatologist. Maybe a steroid injection could help you in the meantime? Personally I wouldn't wait the 4/5 months to be seen.

Yes I too have recently had a diagnosis of PSA, I have had it about 12 months but now diagnosed. I have been on methotrexate and abatacept for some time. The psioriasis is on the palms of the hands, elbows and bottom of my feet this being the worst, my feet cracking open on the heels and bleed sometimes and the skin just peels off and I have been told to use diprosalic and just moisturise loads. It has improved somewhat but doesn't seem to be a going. Whatever next .........

Brychni
Brychni
in reply to jayne17

Hi Jayne - I don't have any skin symptoms. for a while I had yellowing nails, well only 2 on each hand but actually it has gone - not sure what that was all about! My grandmother had psoriasis though and I remember it being very bad on her legs - she also had some sort of connective tissue disorder.

Hi Brychni

I was diagnosed with psoriasis almost 50 years ago and ten years later with psa. This began with my left knee, then after a year or so, my left knee. This was followed by small extremity joints and all the time my psoriasis progressed, affecting my elbows, knees, shins, scalp and fingers & toe nails. Following a biopsy on my knee at a private clinic, I was advised to keep moving & enjoy life as best I could. During the ensuing years I have experienced debilitating flares with extended periods of flu like symptoms and pain but no offer of effective treatment. I moved area with my job and after 30 years of only painkillers, I signed to a new surgery. I was immediately referred to a Reumatology Consultant who acted instantly with blood tests, X-rays, ct scans and treatments. Having been on methotrexate for many years, I’m now on biological pens & sulpha, have had both knees replaced. I have no psoriasis, little or no pain and cannot remember when I last had a flare. Don’t despair, have faith in your Reumatology guidance and don’t ever give in to this invidious condition. You will prevail. To end on a lighter note, when I first discovered psoriasis, as a young man, I consulted my GP. He was a burly Scot, close to retirement. As the condition was mostly in my scalp, and being young in the 70s, my hair was very important to me. I asked him if I would go bald? He put down his pen, looked at me over his half rim specs and said “Is yer father bald?” I answered sheepishly, “Yes”. He followed up, “Was yer grandfather bald?” “Yes” I replied. “Aye, you’ll go bald!” 🧐 Thankfully, that prognosis was incorrect!! Stay positive, stay safe & live to the full. 😷

Brychni
Brychni
in reply to Olderguy

Aww thanks for this Olerguy! Am still exercising and living life to full as much as we can on lockdown! wish I could go swimming; I find it difficult (more of a runner and cycler now) but I want to get swimming fit and take the weight off my achy feet.

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