Psoriasis and joint pain advice and experiences needed

[Vegas]

Hello everyone, sorry for the long post! I hope you’ve all have a good Christmas.

I have had psoriasis most of my life and in the last year it has developed and is now severe. I saw a private dermatologist in the summer who advised I get an NHS appointment as I will need to start treatment which will require regular monitoring (and so there is a cost implication if I go private) I have an appointment in January with the NHS dermatologist and would like to attend with the right knowledge questions to ask.

I have a history of joint pain in hands, wrists, feet and degenerative discs and changes in my spine. My joint pain and stiffness has escalated and progressed inline with the progression of my psoriasis this year, both have got very bad, very quickly. There is now not a joint in my body that does not hurt. Pain killers are of little help.

I was referred to a rheumatologist who said that because my bloods were fine and because he couldn’t identify any swelling of my joints on the day, I didn’t not have psoriasic arthritis. He discharged me back to my gp with a diagnosis of osteoarthritis.

Does this sound right to any of you? Can osteoarthritis progress so quickly in line with the progression of my psoriasis? I am in a lot of pain, my joints are very stiff, I feel terrible. I am 45 but my joints are like that of a 90 year old. I can physically see the deformity in many of my joints and the speed at which this is happening is quite worrying.

Do I need to get a second opinion?

Will the treatment for my skin help my joints? ( I can’t have light treatment due to a history of melanoma so am assuming I may go onto methotrexate or similar??

Does anyone have any advice or tips for my dermatology appointment? I’ve waited so long I just want to make sure I get the most out of the appointment.

Any advice, experience, thoughts will be very helpful.

Thank you.

[MrsDarcy1]

Your story sounds a lot like mine. Although I’ve had psoriasis since aged 8 and joint pain from my late twenties onwards, I was only diagnosed with psoriatic arthritis this year -aged 44. I too, didn’t have any visible swelling- but I had had an op a few years earlier that showed loads of synovitis. Without that, I’m sure I would have been dismissed too. My joints are worse at this age (…but fluctuating hormones probably don’t help!)

In other words- yes, you may still have PsA. I found a group on fb to be very helpful and answered many of my questions. You can have PsA and normal bloods for example. On fb there are hundreds of people who have been misdiagnosed or dismissed. It’s pretty common. Many drs aren’t experts in PsA either, so it can get missed. I saw three rheumatologists over the years and only got my diagnosis with the forth. It took twenty years in total. 😞

I’m so sorry you’re in so much pain. Please consider the fb page for guidance and having a second opinion. I can’t help with the dermatology question as I’ve never seen one myself.

Best of luck and HNY!

[Vegas in reply to MrsDarcy1]

Thank you MrsDarcy1. I will seek another opinion from a different Rheumatologist and will check out the Facebook page. I think your experience is similar to mine as you say and I'm sorry it's taken so long for you to get a diagnosis. Can I ask what treatment you are on and if it's helping? Xx

[MrsDarcy1 in reply to Vegas]

I’m on Sulphasalazine. It’s helping a bit- haven’t had a major flare up since, but I wouldn’t say I’m pain-free. Best of luck! x x

[Vegas in reply to MrsDarcy1]

Thank you!

[Thanksnhs]

Hi I have had psoriasis for many years and in the last couple of years joint pains especially in my hands and feet. I got X rays done and they confirmed arthritis in my knees as well, I got an appointment for rheumatoid arthritis and the doctor said she thought it was osteoarthritis the only treatment I got was co codamol, wind the clock on till now and my GP done a lot of bloods and confirmed it is rheumatoid arthritis and gout I have. The thing is my psoriasis is gone due to me being on imunosuppresants but my joints are worse and I will now have to start the process again to get a hospital appointment because the consultant thought it was osteo. I hope you can get some answers at your appointment and some treatment for your psoriasis, I would ask about getting bloods done again re joint pain in case like me it was a wrong diagnosis. Take care and let me know how you get on. Char

[Vegas in reply to Thanksnhs]

Thank you for your help. I waited for such a long time for the rheumatology appointment then like was dismissed with a diagnosis of osteoarthritis and told to take cocodamol which I'm was already on. He didn't even look at my skin. I have no doubt there is some osteoarthritis butbim wondering if this is masking the psoriasis arthritis symptoms. I feel as if I will have to pay again for a private appointment with a different rheumatologist as the NHS waiting times are so long. I will ask my gp to redo the bloods as you say. Thanks for your help and sorry to hear how bad your joint pain is. Xx

[L8kside]

Hi. I’m so sorry you are suffering the way you are. I would definitely get a second opinion from another rheumatologist! Did they do any lab work or crays?!? Did dermatologist suggest Skyrizi?

I had psoriasis severely several years back and Skyrizi injections cleared it all Then I started with knuckle and foot pain last year and X-rays of my hands and feet showed markers of early psoriatic arthritis. I’ve been switched to Tremfya (by rheumatologist)recently so still waiting on response but my feet and hands have started to blister again.

[arvine in reply to L8kside]

Can I ask please what are markers on exrays that show psoraitic arthritis?

[Vegas in reply to arvine]

Yes I'd like to know this too 😀

[L8kside in reply to arvine]

I’m sorry I wasn’t clear. “Markers” on X-rays are areas that show certain changes in the small knuckle and toe/foot joints. A markers means there’s a visible abnormality (even tho it’s may be slight) visible to the radiologist. When films are ordered with the diagnosis of sudden onset “foot pain or finger digit pain” the radiologist looks for these specifics

I’m a nurse of 34 years so I can over describe a bit

- hope this helps. let me know if you need more clarity

Susie

[Vegas in reply to L8kside]

Thank you Susie. Do you know how these markers are specific to PSA as opposed to say osteoarthritis? I'm curious as my hands have many joint changes on old x rays but what would make radiologist conclude these changes are osteoarthritis and not PSA as I'm assuming xray won't show the inflammation which is what I am told is lacking in my case? Xx

[L8kside in reply to Vegas]

Sorry so late responding but on xray psoriatic arthritis can show more tendon/ligament involvement Osteo is in the joint itself i.e. the bony area

[Vegas in reply to L8kside]

Thank you xx

[arvine in reply to L8kside]

Sorry for long post but doesnt osteo and Ra show abnormalties in finger joints too, how can they differentiate from psoraitic arthritis

[L8kside in reply to arvine]

See the above response to the X-ray info

[Vegas in reply to L8kside]

Thanks for your reply. They did some bloods but no x rays at the rheumatology appointment. I have decided to seek a second opinion. I'll ask about Skyrizi at my dermatology appointment thanks for the tip! Hopefully the tremfya will help you soon. Let us know how you get on xx

[junik53]

It wouldn’t hurt to have a second opinion. I have had Psoriatic arthritis, also osteoarthritis’s fibromyalgia , my joints don’t swell much , I am on Methotrexate injections , this has made my psoriasis almost disappear, but be patient as it takes a few months before it will start to look better. I just have some scales on one arm and I just use Dovobet on it , in the shower I use a shower cream by Nivea and it thouroly moisturised it . Good luck ( be carefull in bath: shower as it makes it slippery

[Vegas in reply to junik53]

Thanks for the reply. I'm glad you've had some improvement in your skin. Interesting up you have multiple causes for your joint issues. I'm thinking my osteoporosis is masking in a way or getting in the way of a PSA diagnosis.

How are the side effects of methotrexate for you? Xx

[Tugun]

Yes, it's been about twenty years now- a long story.

Firstly blood tests can't diagnose psoriatic arthritis. Doctors (including rheumatologists) only diagnose it if it gets so bad that the diagnosis is obvious and it usually helps them if the patient has current psoriasis.If they don't recognize it as psoriatic arthritis, then they usually diagnose osteoarthritis - severely frustrating and unfortunately not true.

When my psoriatic arthritis first came on, I had negligible psoriasis. The arthritis was in my knees and some of my fingers. Typical with psoriatic arthritis, different fingers would swell and then go down and then other fingers would swell and take their place. Even today it affects different joints at different times. For me, I found that rest helped the swelling go down. When I couldn't rest due to life, the fingers that were swollen became permanent. After about ten years a couple of those fingers have partly improved, but others have taken over. Unusually, when my fingers first began to swell 20 years ago, the nail on those particular fingers went white. So I had three or four white nails at a time. The white nails have now completely disappeared but some of the fingers are swollen and when I do too much physical activity, I wake up the next morning with sore and swollen fingers. At present my two ring fingers are the focus of the swelling - as well as a variety of joints.

I originally strongly suspected that I had psoriatic arthritis but no doctor would look into any further as I barely had any psoriasis. I gave up asking. Then I walked into a new doctor who looked at my hands (I didn't ask her to) and said, "I think you have psoriatic arthritis."

"I think so too," I thought. She sent me for x-rays and diagnosed me.

By the way, she later informed me that she, too, had psoriatic arthritis which is why she recognized the early signs of psoriatic arthritis in me.

As I have uncontrolled asthma and easily catch chest infections etc, I have not gone on any drugs but have handled it with rest and naturopathic medicine and vitamins designed to lower inflammation. I was on Mega Oil (as well as many other things) which is similar to Udo's Oil but when my gall bladder played up at the beginning of the year, I stopped the oil. I had been on the oil for 18 years before I stopped. It is full of Omega 3/6 and 9 in the right quantities. Omega 3 is very good at reducing inflammation. However there are many other herbs etc that also reduce inflammation.

If you believe you have psoriatic arthritis, don't accept the osteoarthritis label. Seek out as many ways as you can to reduce the psoriasis and psoriatic arthritis. Some people find going off certain foods reduces the psoriasis. Each person is different. Find a naturopath or alternative medicine GP who may help you. Not all can. You just have to find the right one for you.

Most doctors will not diagnose psoriatic arthritis unless your fingers or limbs as so deformed that it is obvious to even lay people. Don't let yourself get that far. Start trying to find ways to help yourself now. I wish you all the very best and just realize that you are not alone. I believe you. Keep seeking help from doctors but you can't wait for a doctor to diagnose you, you need to start being proactive and seeking alternative help. I wish you all the very best.

[Vegas in reply to Tugun]

Thank you Tugun. This is really helpful and I'm sorry you've been through the mill too by the sounds of it. I will certainly take on board your advice. I can see deformity in my hands and feet which is quite rapid and quite scary. I'm making an appointment with a private consultant to hopefully make some progress. My skin is absolutely awful at the moment so dermatology really shouldn't fob me off next week but we will see! Take are and thanks again xx

[Tugun in reply to Vegas]

I wish you all the best with the private consultant. I pray that it will lead to a better result.

[arvine in reply to Tugun]

Hello well I have arthritis, apparently osteo, but have has psoraisis on elbows for years, now been told could be fibro, but have been prescribed methotrexate weelky injections, fingers hands, wrists, ankles all joints hirt, muddle fingers tend to lock up,, have several issues with back, osteo, spinal stenosis, degeneratvlive, and severe osteo in hip, scheduled for replacement Feb 20th, not any relief from methotrexate yet , have had 6 injections.., and apparently have to stop 2 weeks before surgery ? Bottom line is may have few types of arthritis and cant gey definite diagnosis except osteo, chronic pain daily is very draining, and very apprehensive about surgery

[Tugun in reply to arvine]

So sorry you are going through all of this. I just pray that you find the right people to help you and that any surgery goes really well for you.

[Vegas]

I hope the methotrexate begins to work for you and you get some relief from the pain soon. What pain medication are you taking if you don’t mind me asking? Good luck for the surgery. I can imagine it’s daunting and I hope all goes well ❤️

[Vegas]

Thank you all for sharing your experiences. It has helped me understand a little more but also realise that diagnosis is not always easy! I’m so sorry to hear how much of a struggle it can be. Are any of you in the North West and can recommend a rheumatologist? Xx

[Joan161]

I have psoriatic arthritis. Was only diagnosed November 2024 after 4/5years of pain. Which got worse each year to the point I could hardly walk. I was misdiagnosed by a private rheumatologist with fibromyalgia in 2022. I am 37 now and the pain all over my body and in my joints has been going on since I’ve been 32.

I went to NHS rheumatologist Jan 2024 as my GP referred me as urgent, as I couldn’t walk and in so much pain. I also had brain fog, and really bad fatigue. I had bloods done then, and was told I had a gene HLA-B27. They originally thought I might have ankylosing spondylitis which my aunt has. I was sent for a MRI and ultrasound of my hands.

My MRI of my back was clear as I didn’t have ankylosing spondylitis. But the ultrasound of my hands showed synovitis (inflammation around the joints) in my middle knuckles. So the rheumatologist diagnosed me with the symptoms I had, ultrasound, having the gene, psoriasis in my toes and skin, and pain in my feet.

Also he pressed on points all over my body which were painful. He diagnosed me with plantar fasciitis, seronegative inflammatory arthritis (psoriatic arthritis), psoriasis, and enthesitis ( because of arthritis causes inflammation in ligaments and tendons). I also have flare ups of psoriasis on my face and psoriasis in my toe nails. Psoriasis in my toes started 2023, and on my skin in 2024.

But the rheumatologist said because I had the gene I was increased risk of developing psoriasis, inflammatory arthritis, and inflammatory bowel disease. Apparently if you have that gene that an injury or infection can trigger the psoriasis, arthritis etc…

I’ve been started on Sulfasalazine, only on it a week so far. Don’t know if that helps knowing how it was for me. I don’t get really extreme swelling. But parts of my fingers, toes swell sometimes, and my ankles. I took pictures of the swelling and my face when psoriasis flared up to show the rheumatologist at my appointment.

Hoping all goes well for you when you get an another appointment. I know how frustrating it is not knowing what’s wrong, and wanting answers. Also it’s so hard when you feel so unwell too to try and speak up for yourself and remember what you want to say. I brought my husband to all my appointments aswell so he could remind me of anything I’d forget.

[Oneash in reply to Joan161]

Just be aware you have several symptoms that overlap with Pernicious Anemia or vitamin B12 deficiency and may need B12 injections. You want healthy blood serum levels over 550pmol/mL and normal, not high, homocysteine to rule it out.

[Joan161 in reply to Oneash]

Hi Oneash.

I have had my b vitamins, and bloods checked regularly. I looked at the symptoms there I don’t feel like that’s what I have. I have inflammatory arthritis. But thank you for your reply.

[Vegas in reply to Joan161]

Joan161 I am so sorry you’ve been through this for so long but am glad you now have an accurate diagnosis and are hopefully on the way to some effective treatment that will make things easier for you.

I don’t know if I’ve have the HLA-B27 blood test. I’m guessing not or it was negative. I’ve emailed the NHS rheumatologists secretary to get a copy of my blood results and have made an appointment with a private rheumatologist to try and speed things up. The waiting times as terrible at the moment so I’m having to pay £300 for a private appointment but I am in so much pain it’s the only thing I can do.

I’m so frustrated that the rheumatologist didn’t even look at my skin. Under my clothes my psoriasis is extensive and covers most of my body but he didn’t even bother to look. It’s also on my scalp and face but at the time my face was pretty clear. It bleeds through my clothes and onto my bedsheets and is painful. At least I have a dermatologist appointment next week so fingers crossed they can help.

Thanks for your response, it’s been really helpful. Interesting you mention bowel issues, (I’ve had very painful IBS for years) and that injury or infection trigger things (my skin symptoms have got much worse since I was hospitalised for 8 days for an unrelated infection).

Beat of luck with your treatment xxx

[Tugun in reply to Joan161]

Hi,

Thank you for the information. I will check up on HLA-B27. Good Luck with you recovery. I hope you begin to feel less pain and inflammation soon.