Psoriatic arthritis wrong diagnosis?

Melanie17

I have just been given a diagnosis of psoriatic arthritis but I query the diagnosis.I have no problems with my toes and fingers-x rays confirmed this,nor do I have pitted nails,nor do I have psoriasis.RA factor is negative.I feel that the consultant gave me this diagnosis based on the basis of pain and problems with my knee and shoulder and a CRP reading of 43.Is it possible that people like me get a diagnosis of Psa because of raised CRP levels and negative RA factor?Also,one of the blood tests had to go off to London for analysis.Any idea what this is for please?
Thanks
Melanie

stickywicket

Maybe you're 'over-thinking' this a bit. Rheumatologists don't usually hand out diagnoses without taking into consideration lots of factors. You may or may not have PsA but your rheumatologist is at least convinced you have an autoimmune form of arthritis and, as the meds are much the same whichever type we have, it doesn't matter too much which it is. The main thing is to get you established on disease modifying meds which will hold it back.

I've no idea which factors would be taken into consideration nor why one of your bloods went to London. I do know that not everyone gets all the symptoms of any disease, especially at first.

If you're worried about it why not have a chat with your GP who will probably understand the report better than us laypeople. I hope he / she can allay your fears.

dreamdaisy

I began PsA in my left knee, with P on my scalp that cleared after a trip to Italy (that was in 1997). I finally saw an interested rheumatologist in 2002, and was initially classed as an auto-immune-inflammatory arthritic but that changed in 2006 with pustular P appearing on my soles and palms. I have occasional blasts of it but no pitted nails. The meds stayed the same, however, and due to the delay in my starting them I am in a real pickle now, which I don't recommend to anyone! PsA is a sero-negative form of auto-immune arthritis so rheumatoid factor is not present. It is possible to have psoriasis and not develop the arthritis, and it is possible to have the arthritis without the psoriasis. What meds have been suggested? DD

PS There is a familial link in my case, my father had the occasional bout of P but only in one place, his left elbow.

Melanie17

Stickywicket.Many thanks for your reply-appreciated.I do 'over think' things in an attempt to understand!The consultant intends to put me on Methotrexate as soon as the results of chest x rays are received.I am aware that the name of the diagnosis may not be so very important because the treatment is the same.But I am grateful for your insightful comments.

Melanie17

Dreamdaisy.Thank you for taking the time to reply to me.I initially questioned the diagnosis because I don't have psoriasis,nor(to my knowledge) does/did any member of my family.Still find it odd that a diagnosis of Psa can be given,without any indication of psoriasis,but I am not the person qualified to make the rules.I am going on to take Methotrexate as soon as the results of my chest e xays have been received.

Melanie17

Dreamdaisy I forgot to ask.Any advice/tips you may have for me please?Thanks

dreamdaisy

I honestly don't know what to advise! My story is somewhat different to yours, you name it I've probably taken it but although I was aware that psoriasis was in the family (my dad and, as I later found out, an aunt on the maternal side) I never thought to mention it because I thought I had not had it (when I did it was misdiagnosed as scalp dermatitis by the same GP who failed to spot something arthritic was going on). I was an arthritic ingénue who was used to dealing with asthma and eczema but no more than that. I know more now - and wish I didn't.

I suspect you may be feeling more tired than usual and when you sleep you wake still feeling tired - that is par for the course with an auto-immune form which is not yet under control. Am I on the right lines? DD

Boomer13

Hi Melanie;

I also have psoriatic arthritis. My diagnosis arrived in a confusing fashion too as originally it was thought I had mild RA but I was not referred to rheumatology because of the lack of joint swelling. I was told my arthritis was "non-errosive" because I didn't have swelling. I had had minor rashes all my life, one persistent rash on my scalp that I didn't even see a doctor about, something on my feet which involved a lot of peeling skin. When biopsied, it turned out to be psoriasis but in no way looked like it to start with. Years along and now I have stubborn patches of pustular psoriasis that are easily recognizable. So, I had the arthritis since about 2005 (and probably longer in my spine, looking back now) and the psoriasis wasn't diagnosed until about 3 years ago. I do have a lot of joint damage from not receiving treatment (MTX/biologics & Plaquinel) for years after the pain and dysfunction started. So you can't assume that joint damage is not going on just from lack of visible inflammation.

I was very fit and healthy when all this happened and you couldn't see that anything was wrong with me. I really wish I could have started treatment much earlier because I don't think my joints would be as bad as they are now. I have all joints affected to some degree and my spine, upper and lower.

Good luck, I hope you can get all your questions answered to your satisfaction.

Anna

dreamdaisy

Psoriasis is one of those skin conditions that everyone thinks they know what it looks like when it fact it can appear in a few guises. ray-ray, who posted recently with a similar query to yours, had ignored her skin trouble for years not realising it was psoriasis.

I think that the affected areas of the joints are different in PsA to RA but don't take that s gospel: the word enthesis (I think that's how it's spelled) is coming to mind, I think that's where muscles attach to the bones and with us that is the bit that's swelling, but mine was very evident in the synovial lining of my left knee, it ended up being 27" in circumference before it was tackled by a surgeon. The pictures from my op. are now in medical text books.

I suppose I was lucky in that I had very visible swelling but the lack of treatment for five years has cost me dearly. OA has moved in so some of my joints have both in them which is challenging! DD

Melanie17

Dreamdaisy-many thanks.I am learning more from the good folk on this forum than from anywhere else.My problems also started with my left knee.I had a knee arthroscopy for torn cartilage and the ensuing problems, as in swelling, were put down to the op.I now realise this was the start of my arthritis,around 2 years ago.Thanks for the info on enthesis-that may explain the muscular pain that I feel near to the joints from time to time.Luckily,a different doctor saw me and looked thoroughly at my other sore joints and ordered up blood tests.

Melanie17

Dreamdaisy.You are right,I am tired all of the time.Before the Psa I had problems with sleeping so the added discomfort in the night has meant that some nights ,I don't sleep at all.Luckily,I am self-employed,and sit in my recliner during the day and doze off over paperwork!Not ideal,especially when the phone rings.
Interesting that you mentioned eczema and asthma-these are both in my family,and I did have mild eczema as a child.If your knee had a circumference of 27 " you must have been in so much pain.It's hard to believe that anyone would allow it to get so bad.My knee also 'blew up' at one point and the nurse at the walk-in centre refused to aspirate it and sent me packing to the nearest hospital.I felt a real fraud but after hours of waiting a kind orthopaedic nurse took off lots of fluid.If you are in the U.K I would suggest that the hospital may be the best port of call.
Thanks again,Melanie

Melanie17

Hi Anna,
Many thanks for your insightful comments.I too was fit and well when all this happened.Would it be correct to say,that if you had been given a blood test for inflammation far earlier,as in the CRP test, the results would have shown raised inflammatory markers?I ask this because my normal GP didn't send me for a blood test.My saviour was a different GP who seemed more clued up.One of the tests that he did in the surgery was so simple-I complained about pain in my hand and he shook my hand.Just a normal,quite firm handshake.I nearly screamed the place down.He also looked at the 'whole' me and said that I appeared to be lopsided. am sorry that this happened to you.Maybe doctors are more clued up than they were ten years ago.

Very best wishes Melanie

dreamdaisy

I am in the UK, was born with eczema and developed asthma aged seven, both courtesy of the maternal side (Ma missed out on both so was generous with me ) My Pa had rare small bouts of raised plaque psoriasis but mine tends to the pustular on my palms and soles, plus the odd plaque here and there usually on my ankles. I think the meds I take for the arthritis control the P, they certainly control the swelling (my inflammatory markers are rarely above 3 now) which is how I know the drugs are working for the PsA. The OA renders their effect invisible.

Tiredness is a sign that the disease is not under control / suppression so hopefully the meth will help you with that. Tiredness will remain a factor because it takes us more effort to achieve less - you may also have other meds added as you go along, I am on a triple therapy and have been for eight years now (I think, I forget, it all blurs). DD

bubbadog

I'm going through this at the moment! A assistant Consultant told me I had Psoriatic Arthritis not Osteo-Arthritis and told me to stop some of my meds which threw me and when I looked up Psoriatic I didn't see any connection to my symptoms so I spoke to my G.P and she agreed with me and told me to stop one med and see how I get on.

Melanie17

bubbadog wrote:

I'm going through this at the moment! A assistant Consultant told me I had Psoriatic Arthritis not Osteo-Arthritis and told me to stop some of my meds which threw me and when I looked up Psoriatic I didn't see any connection to my symptoms so I spoke to my G.P and she agreed with me and told me to stop one med and see how I get on.

Hello Bubbadog,
This doesn't sound very good.Could you not ask for an appointment with the consultant(not assistant consultant) and if there is a problem complain via PALS.At the very least,you need the hospital and the GP to agree!One thing-have you had a CRP test done?This is the test that will show the normal range for inflammation of 1-10.Did you have this done?As far as I know,if you just had osteoarthritis,your test results would be in the normal range.But it is possible for you to have osteoarthritis and psoriatic arthritis but your consultant should tell you this.As you can see from my posts,I was very doubtful about my diagnosis of psoriatic arthritis.But I know that ,like you,I have osteoarthritis and psoriatic arthritis.

stickywicket

I know bubbadog said in a previous post that one of the meds stopped was hydroxychloroquine. To me it makes no sense (a)that hydroxy would be given for OA nor that (b)it would be stopped if the diagnosis changed to PsA. Some confusion here I think.

Melanie17

Hi ,
Am still waiting for my first prescription of Methotrexate but am secretly very frightened about taking the tablets.This is due in part to a lifelong dislike of tablets and the fact that in my corporate days I was a very heavy drinker and smoker.My kidney and liver function tests were normal :xmas_rolleyes: but I know that both lungs and liver must have sustained damage.Am not at all proud of this lot.Anyway,the potential side effects of Methotrexate scare me.Any help please?

Should we choose a Christmas song for forum members?My suggestion would be a number by Bony M :carolers:

Melanie

stickywicket

I think we all fear the meds at first. Plus any new ones. But, if your liver and lung function tests are Ok it looks as if you got away with your dissolute youth Remember you will be continually and carefully monitored while on meth. I only need my bloods doing every 3 months now but that's about 15 years in. And I have mild asthma which the meth hasn't exacerbated. Manufacturers are obliged to list any potential side effects but they remain only potential. Most people don't get them. And, believe me, the effects of untreated inflammatory arthritis are pretty devastating.

We have a few former forum 'Carols for Arthritics' threads here. Enjoy :carolers:

http://arthritiscareforum.org.uk/viewtopic.php?f=12&t=43886&hilit=carols

http://arthritiscareforum.org.uk/viewtopic.php?f=12&t=41128&hilit=carols

http://arthritiscareforum.org.uk/viewtopic.php?f=12&t=43886&p=582232&hilit=carols#p582232

bubbadog

Funnily enough I had a chat with my Rheumatology Nurse after I left a message on her answerphone with a quick message asking her what she thought and she had spoken with my Rheumatologist and have said no I don't have Psoriatic Arthritis and to start straight away back on my medication that I was told to stop. I had the results of my blood tests and things are still bad including my white cell count really low.