Pitted nails

[gwynedd]

Hi all,  this is a bit of a fishing exercise really. Have any of you lovely people out there been diagnosed have Psa without having nail pitting. I have all the symptoms but without nail involvement. I'm on sulfasalazine ect... But with no definitive diagnosis.  Its frustrating. Every rhuemy appointment I have my nails investigated,so it seems to me their reluctant to diagnose without the pitting. Any advice from you Psa,s would be greatly appreciated. Thanks 

[Hidden]

Nail involvement does seem to be very common, I've heard that 80% of people with PsA have it.  However, that does leave 20% ..... which is significant.  

I didn't have pitting, just slightly 'manky' toenails which I'd thought were fungal.  To add to the confusion, I've found that specialists see different things when they look at my nails .... some think they're fine, some think they're psoriatic as hell, some think they're so-so.  

These diseases put us in a strange place .... sometimes we 'want' certain symptoms in order to at least get a bit of clarity!  The good thing though is that you're being treated.  What are your other symptoms?  

[gwynedd in reply to Hidden]

Hi Postle2 

Thanks for replying,  I know it's weird that you start wanting to have symptoms, but that's what will give me answers. I've got joint pain, stiffness and swelling, psoriasis, tiredness, anemia  ect... Interesting that you mention toes, I have a few toes with discoloured nails but the rhuemy hasn't looked at them. I think when I see her again in May I'll mention it, she's always focused know my fingers. 

[Hidden in reply to gwynedd]

'Discoloured' and a bit thickened is pretty much how my toenails were, and are.  At the time of diagnosis I was referred to dermatology & they took a sample of toenail for analysis.  That test didn't have anything to say about nail psoriasis (I'm not sure if that's possible) but it did confirm that the issue was not fungal, which was enough to point to psoriatic changes I think.   It might be worth taking photos of your nails in a good light seeing as there are occasional bouts of sunshine at the moment!  You might capture something that isn't quite so obvious in the consultation room.  

[Hidden]

Hang on .... just realised that you say you have psoriasis.  Wow.  That is one hell of a cautious rheumy!  Obviously I am not a doctor but it seems odd that he or she is still in two minds about the diagnosis.  Some rheumys do seem to have a bit of a thing for one specific symptom above all others .....   

Perhaps just now it doesn't matter that you don't have a firm diagnosis.  Depends how bad things are & how long you've been putting up with the disease.  But if it comes to the point at which DMARDs are not making a really significant difference and you feel you might benefit by biologics and your rheumy is still being so cautious as to be standing still, then it might be as well to find a new one.  I can recommend a few & your GP might help with that too.  The NICE guidelines specify that people with PsA who have failed 2 DMARDs and have a few swollen / tender joints should qualify for biologics.  So that is really the point at which a firm diagnosis one way or the other becomes hugely important.

[gwynedd in reply to Hidden]

Thank you for the info,that's really helpful.  The sulfasalazine isn't really working (my first round of dmards), I'm on Naproxen as well and I'm still in pain. I've had the symptoms for about 12 months now, feels longer! So I'm relatively new to all this stuff. I'm just about managing to stay in work but some days is a struggle. I'm hoping in May I'll get offered an alternative to sulfasalazine. Thanks again for your advice,  you can pm me the names of any recommended rhuemys.

[Hidden in reply to gwynedd]

I think 12 months on a DMARD that isn't working is a long time.  3 months is a common 'trial period'.  In my experience the one symptom that does tend to move treatment forward is persistently swollen / tender joints.  That does not necessarily mean massively swollen.  I would think this is because PsA is potentially very destructive of joints and swelling, tenderness and a lot of stiffness can be a sign that those joints are at risk.  Having said that, I had one rheumy who looked at my whopping great knees and declared them normal.  I sought a 'second opinion' after that, different rheumy, different hospital, and although the referral involved waiting for 6 months it has been very worth it.

I'll pm you with some names.   

[gwynedd]

Thank you postle2,

Because they were undecided what to do with me as my bloods were showing seronegative rf ( normal for Psa as I'm sure you know ) they wanted to wait and see! I've only been on dmards since January, I think they doubted my psoriasis as I didn't have any on my first few visits, but  I did on my last appointment with the nurse, so I had a witness. My psoriasis isn't bad, it only usually flares up a few times a year, I've got pustular psoriasis, but my daughter has the plaque type, v.bad. I'm taking pics of my manky toes now just in case their ok by appointment time! 

[flow4]

If you have joint inflammation plus psoriasis plus negative RF, you meet the diagnostic criteria for PsA! 

rheumtutor.com/caspar-crite... 

I have a PsA diagnosis without nail involvement. Or rather, I have no 'significant' nail involvement because my toenail changes have been dx as fungal, and I have only had splitting and 3-4 pits on one fingernail, and that is apparently normal.

[gwynedd]

Thanks for that flow4, it is helpful to know others have been diagnosed without significant nail involvement. I will go to my next appointment with more determination to get some sort of diagnosis. 

[flow4 in reply to gwynedd]

Print out the CASPAR criteria and take them with you. Say you think you fit, and ask whether they agree...?

[mirren]

Hi gwynedd

I am late to this but am a good example as I have never had psoriasis as far as I know, but developed sudden symmetrical (RA pattern) inflammatory arthritis end of May last year. My fingers and toenails are perfect, except both my little toenails don't grow much and have skin over much of them (I thought it was from being poor as a child and wearing too tight shoes). Anyway, no rheum has ever looked at my toenails,

My neg Rf, family history (mum had severe plaque psoriasis and crippling Psoriatic Arthritis) got me diagnosed at first rheum appt. I had ultrasound of my hands which showed DIP involvement which sealed it. There is a slight question over my diagnosis due to other issues but my inflammatory arthritis is being called Psoriatic Arthritis.

I am on Methotrexate and Hydroxychloroquine and doing ok

Are you at a very small hospital with an inexperienced rheumatologist?

[gwynedd]

Thanks for replying Mirren,  my hospital isn't small and my rhuemy doesn't seem inexperienced 😕., but I have noone to compare her to. My daughter has severe plaque psoriasis but I haven't been asked about relatives with psoriasis. I had a set of xrays last year( came back fine) but no scan. The sulfasalazine isn't working for me at all, did your rhuemy start you off on it? Are you relatively pain free on your meds? To have my old life back seems a distant if impossible dream at the moment. 

[flow4 in reply to gwynedd]

Gwynedd, it's appalling that you have never been asked about relatives with psoriasis - I wasn't either. But it is part of the diagnostic criteria - if you have inflammatory joint disease, plus a close relative with psoriasis or psoriasis yourself, plus neg RF, you should be diagnosed with PsA!

[gwynedd in reply to flow4]

Thanks flow4, That's what I understand the criteria is. I was asked if I had any relatives with ra but not if any had psoriasis. I'm going to push for a diagnosis at my next rhuemy appointment, I'm going armed with the caspar criteria and a determined look on my face 😡😁. In the past I've felt intimidated but not this time, my health is too important. I just feel that with a diagnosis I can move forward, and have something to tell people when they ask! 

[flow4 in reply to gwynedd]

Great! It's not just that it's easier to communicate and move forward, it's also that the best treatment for PsA is sometimes different. An accurate dx really does matter!