Does this sound like Psoriatic Arthritis to you?

[Sianela]

So after being told I had RA I was then told I didn’t as although I had lots of swelling I had no joint damage. However I test positive for the HLA-B27 gene and have swollen ankles around the joints, swollen knees, swollen Achilles’ tendon and what the rheumatologist described as tennis elbow on one side and golf elbow on the other (I don’t play either)

I have sore fingers and toes an irregular heartbeat sometimes and fatigue and flu like symptoms as well as lower back pain.

The swelling is never hot or red. I have never shown any inflammatory markers in my blood.

I have flares like the one I’m in now and feel very unwell. My mum was also tested for the gene and was negative. My father passed a long while ago but my mother recalls him having terrible scalp problems with itchy plaques. When I was younger I also had a very itchy scalp but was never diagnosed with psoriasis.

My rheumatologist say I’m a mystery because my bloods are normal and the swelling is all around the joints not in them. I’m currently on a short course of steroids but they don’t help much.

Thanks in adv x

[chunkypie]

I had Psoriatic Arthritis in the fingers or at least i did until i started adalimumab. Now it is almost gone. I had what they called "sausage fingers", fingers that swelled up but i also had full movement of the joints that confused the Consultant. It was decided it was most prberly Psoriatic Arthritis due to me having Psoriasis .

[Sianela in reply to chunkypie]

Hi thanks for the reply. My fingers get swollen and I know they are swollen because I can’t get my rings on and people who know me say wow look at your fingers but the consultants look at them and say they aren’t because they are large all the way down and not swollen at the joints 😳

[Batty1]

If you had Psoriasis when your young you still have them the disease doesn’t go away it can go into remission and psoriatic arthritis has no testing its a process of elimination and can take along time to get diagnosed because GPs and some Rheumys just have no clue about PSA ... So if you have Psoriasis or a family history of Psoriasis then YES you could have PSA and need to find a Rheumy that understands the disease.

I have PSA that attacks my tendons (tendonitis) The tendons of my knees, hands and feet are effected and it feels like tendonitis (10 folds) Ive been in a PSA flare for 4 years and im on biologic meds.

[Sianela in reply to Batty1]

Thanks for that. I think my rheumatologist is coming round to the idea the swelling and pain is tendinitis. Do you get swelling with the tendonitis? I’ve got lots of swelling round the joints

[Batty1 in reply to Sianela]

How does Psoriatic Arthritis affect the tendons & ligaments?

Symptoms of PsA in the tendons and ligaments (enthesitis) include pain and inflammation. When enthesitis affects the heel of the foot, it is known as Achilles tendonitis. At the bottom of the foot, enthesitis can cause plantar fasciitis. Enthesitis can also occur in the fingers, toes, pelvis, knees or upper body.5,6

PsA can be asymmetrical, occurring on only one side of the body. For example, all the joints in one finger on the left hand may be affected while the same finger on the right hand is unaffected. PsA can also be symmetrical, with the same joints affected on both sides of the body.2

PsA and enthesitis are chronic and can have periods of remission and flares.

Yes, I swell a lot with enthesitis and makes moving a battle since it attacks bending points (knees, ankles and tops of my feet). GPs will classify any tendon issue as tendonitis because they are unfamiliar with the oddities of psoriatic arthritis. I spent 2 years being told I just had tendonitis as it progressed to the point I was bed ridden from being misdiagnosed for so long. YES if its left untreated it can create permanent damage!

[Sianela in reply to Batty1]

Thank you so much. More than ever I’m convinced this is PsA. When I was originally diagnosed with RA they sent me on a course to get familiar with my disease. They showed the symptoms of various types of arthritis. When PsA was put up I said that sounds more like me. I think my symptoms match that one not RA. I was told I was being silly as I didn’t have psoriasis so I couldn’t have PsA. I am HBL-B27 positive but some of my symptoms like tendinitis in the elbows was described as nothing to do with anything! No one ever asked about my Achilles and yet they are permanently swollen and were spotted by a private physio straight away

[Batty1 in reply to Sianela]

This test looks for HLA-B27, which are proteins called antigens. These are found on the surface of white blood cells that are fighting infection. If you have HLA-B27, you may have an autoimmune disease. An autoimmune disease is when your immune system attacks your own cells. The most common autoimmune disorders connected with HLA-B27 antigens are:

Ankylosing spondylitis, a form of arthritis that affects the spine

Juvenile arthritis, which occurs in children

Reactive arthritis, a type of arthritis in the joints

Your HLA antigens are unique to you. They are determined by your genes. Because of that, this blood test is also useful as a paternity test.

Ankylosing spondylitis - This is psoriatic arthritis!

My HLA-B27 was negative but Im riddled with PSA ... Not all blood test are 100% accurate in diagnosing health problems, this is the issue with healthcare they all seem to solely rely on blood test. I currently have recurring thyroid cancer but the blood test that are supposed to tell you it’s coming back have always told me Im fine .... labs are not suppose to be the sole diagnosing tool doctors need to use their brains ... sadly doesn’t seem like they do this anymore.

Good luck and hope you get a treatment plan soon vs. later!

[MeLliedePena]

My symptoms are similar to yours except that I have constant itching without much rash. My toenails are brittle and flake unless I constantly take care of them. I have swollen painful ankles with severe lower back pain that comes and goes. I just keep feeling like I have all these symptoms but it doesn’t add up to PsA. I am more sure it’s Spondylitis .

[Batty1]

Their is NO blood test for PSA.

My PSA attacks the tendons that attach to bones its called (Enthesitis) and because Rheumatologist are not educated enough about this they end up causing a lot of damage from it which can be massive because eventually it can cause full body stiffness (unable to bend knees or feet ) and tendon tears.

[Sandee007]

Do you have muscle Tension? Internal vibrations? Eye problems? Crooked vingers or toes?

[22Tired22 in reply to Sandee007]

I have all the above Sandee007 - but diagnosed as sudden osteoarthritis in all joints of all fingers of both hands. Onset after an operation to repair severed thumb nerve. No psoriasis (but is in family); itchy parts; pink eye; swollen heel; exhaustion; trouble focussing esp in morning. I’ve believed for a year it is PsA. Enthesitis type pain end of fingers and some toes. Nail issues. I just had an MRI of one hand. Finally it shows ‘inflammatory’ and Osteo arthritis. Rheumo even wrote ‘maybe PsA’. I’ve done trials of Sulphasalazine, Plaquenil and about to do methotrexate. The first two rarely work - 1/3 chance; methotrexate maybe 1/2. Australian prescription pathway is shocking. Latest research shows: 50% of PsA sufferers don’t have blood markers; the genes associated appear different to RA (I don’t have HKA-B27); and first line of choice treatment (paper published recently) should be a biological (something like 80% success in significant reduction. A lge proportion - virtual remission). I am not a medical doctor but a PhD in archaeology! I use a microscope (but not now); my academic status gives me access to all online research and I bring it up with my Rheumo. It’s about 18 mnths of symptoms. Gradually worsening. Now sinus tachycardia and huge increase in arrhythmia- still to be investigated. Just keep pressing the buttons - if you are still seeking a firm diagnosis. I hope mine will come before the two year mark. And a biological.

[Sandee007 in reply to 22Tired22]

To be honest...I am not seeing a doctor anymore because I am fed up because they don't have a correct diagnosis-don't have the time-they don't listen...I am so disappointed (I am from Belgium so I hope you can read all this very well)My story began 4 years ago (after EVLT...operation...that is venous leg disease)

Strange that your story also begins after having an operation...

I went to a lot of medical people but no one ever looked at my feet or hands...

This is the biggest problem...my hands-feet and eyes...

They send me to lots a specialist but not a Rheumo...

At this moment it feel like a have sort of a movement disorder because I feel like a thin man...(I am a woman) do you know what I mean.?

Stiffness...a little bit off tremble in my hands...(only when I use them not at rest)

Pain in hands and feet and mostly numbness.

I do have splayfeet now and crooked toes.

My eyes do not produce any oil anymore so the meibomian glands are blocked.

I can not watch television or drive the care.

Also have very oily skin and scaly rash on elbow and ears.

That's it...I don't mind the pain...but I can not drive the car and watch television anymore...

Using the computer is also very difficult because my eyes can't stand the lights.

And NO ONE seems to care...

NO ONE...can help...I don't understand this and I am not alone...

Lots of people have this problem.

1000000 of people use eyedrops and 99% of them don't work...

I want to thank you for the reply and wish you all the best.

Hopefully you will find good friends and family that are there to help you.

[Batty1 in reply to 22Tired22]

If you have a family history of psoriasis you have a 30% increase of getting psoriatic arthritis without psoriasis.... Osteoarthritis is usually a throwaway diagnosis because they don’t understand PSA.

[Richnroo in reply to Sandee007]

This is late to reply to this, but this is the first mention I’ve seen of internal vibrations. Omg yes! Do you have this? Does it feel like electricity in your body? Is it associated with PsA? I’m less than a year diagnosed with PsA and these vibrations drive me crazy but I’ve never seen them mentioned as part of the disease.

[Sandee007 in reply to Richnroo]

Electricity...yes, it first started in legs but now it is everywhere. And mostly when I am lying in my bed or sofa. I still don't know what is wrong with me. I am going for new blood-test and maybe they can see something more now...it drives me crazy all these symptoms and no answers from doctors...They did say restless leg syndrome...I don't know. Something is really wrong with my muscles. I have twitching everywhere. Thanks for the info!

[Richnroo in reply to Sandee007]

Yes! Mostly when lying down. Feels like a “humming” or electricity. I don’t believe it’s restless legs. My mom has that and this is nothing like that. I’m guessing it must have something to do with the psoriatic arthritis but I have literally never seen anybody mention it until I saw your post. I have noticed that it seems to come when I think the disease is more active. I really don’t know what actually causes it, but it’s somehow connected. And yes there’s lots of weird symptoms that are said not to be related but I really think they must be.

[Sandee007 in reply to Richnroo]

What are your other main symptoms?

[Richnroo in reply to Sandee007]

Overwhelming fatigue, full body stiffness, and pain, most enthesitis- neck, shoulders, lower spine and right ischium. But also a tennis elbow, an Achilles inflammation, a plantar fasciitis, and various other things that come and go. Also a rapid heart rate for which I’m now on a beta blocker , that I thought was from prednisone, but now I’m not sure if that isn’t also the PsA. It’s a laundry list of things, to say I feel pretty crummy. How about you?

[Sandee007 in reply to Richnroo]

All of the above...and my feet are the worst. Muscle cramping. I feel like my muscles on arms and feet are to short and moving them are like extreme stiffness. Sometimes during the day I can walk good and then I have sort of a slow motion in my body. Stiffness of shoulder-hip-feet and hands. Restlessness in my body. Twitching. Weight gain. Constipation. Dry eyes and mouth. Double vision. Itchy scalp. And if I sit in the sun I get strange allergy symptoms like mosquito bites all over...a strange rash...red ears, red cheeks etc...My biggest problems are my eyes. I can not watch television anymore because it hurts...need to wear sunglasses when I go out. Airco, wind, heat are not my friends.

[Richnroo in reply to Sandee007]

Omg yes!!!!!!!! I left out the feet and the muscle cramping! And I also have the eye thing, I have to put continual drops in. And I have the sun thing with the hives too. And now if any cold or even cool air blows on my skin I immediately get a very itchy red rash. You are the first person I’ve “ talked” To that seems to have such a similar symptoms to me. What medications are you on? I’m still on prednisone and recently did reflexis which was the bio similar to Remicade. My blood pressure did not agree with that so now we are trying to see what else insurance will approve.

[Sandee007 in reply to Richnroo]

I take Magenesium-Fish oil-Biocondil- and for pain Dafalgan Codeine almost every day not in the weekends. And I drink a glas off wine 4 times a week. Sometimes also Ibuprofen. I just bought for my eyes Renpho machine and blephasteam goggles. I use eyedrops without preservatives. For the eyes again: Blephaclean wipes-manuka honey-Blephademodex wipes etc...the list is to long, I tried everything! Also have tear plugs. For my feet...very expensive shoes and lots of foot-massages and stretching. I also stretch a lot. I forgot to mention that it is difficult to open jars and my feet are numb a lot. I fall 2-3 a year, my balance is sometimes bad. It feels I am walking over pebbles or tiny stones. My age is 49. My whole body (wrist-leg-knee-ankles) have strange of underneath lumps.

[Richnroo in reply to Sandee007]

My age is 50. I don’t have the lumps or the pebble feeling so glad of that. Yes I take magnesium and fish oil as well as calcium and turmeric and a multivitamin. But then I take the prednisone which is still at 15 mg. I was at 40 mg for almost a year. Took methotrexate but it also did not agree with me. Then there was the reflexis attempt. I’m still working but would really love to be able not to. But then my good insurance would be gone as well as my good paycheck 😂

[Jessiedog67]

I don't know if my reply will be helpful but I have had psoriasis for around 25 years and psoriatic arthritis for about 10 years, I worked in the ambulance service for 24 years before I was told by a consultant to stop work, this was 5 years ago. I am on a cocktail of medication for various issues and these include 2 that I inject, Methotrexate and Etanercept a biologic drug that is also known as Benepali. I have had other biologics with limited success. The point of my reply is everything you have said and the others who replied to you are all right in what they say, having PSA is the most annoying disease you could possibly have, there is not one thing you do that PSA does not effect, whether you are awake or asleep, us persons who suffer from it are well aware of the signs and symptoms so I won't list them.

The routine hospital appointments that you get used to, and fills your diary, are in my experience where you are made to fill like a fraud, on one hand, the professionals prescribe you potent drugs to take, and at the same time writing letters in your records that say there was no swelling, no redness, not tender, joint movement, etc, this really gets me down. PSA not only affects you physically but also mentally this is not if ever considered in your consultations, trying to explain how you struggle and battle everyday activities just to survive your daily routine, only to have a medical person almost not believe you is so humiliating and degrading, your dignity goes straight out the window.

Another area that's also difficult to get around is the benefits system, it is simply not designed for PSA sufferers and so when you complete questionnaires and then attend assessments in my experience little is known about PSA by the authorities or the assessors, thus causing stressful situations that you could do without, but you find a way and battle on through the maze and hopefully get the help you not only need but deserve.

Life with PSA is challenging and at times downright horrible, you live with an invisible illness that is painful, debilitating, and emotionally draining, I do hope you get a diagnosis and your issue is confirmed, but your long term prognosis is not going to be easy, use sites like these for support and talk to people you trust about your illness so they understand you, all the best and stay safe.