Hi, wanted to pick some brains! I’m in the UK. I have had psoriasis for the last 24 years (am 44) which is on my elbows and few bits on my knees but haven’t had any treatment for it for years. 18 months ago I went to my GP for some blood tests as I was feeling so tired I was falling asleep the minute I got home from work. The blood tests showed I had vitamin d deficiency. I had a loading dose of supplements for a month to raise my levels. Almost overnight I developed pain in my knees. I went back to my GP for more blood tests, had an x-ray of my knees and hands and then got referred to the rheumatologist. At this point I was getting pain in my knees, toes and fingers mainly.They repeated my bloods, I had an MRI of my lower back, ultrasound of my knees and started physio. I went back for my follow up appointment and was told there was no inflammation and I wasn’t “ticking all the boxes” for psoriatic arthritis, was told it was osteoarthritis, to lose weight and take supplements and discharged! I have put on more weight in the last 18 months and am probably 2-3 stone overweight which I know won’t help but I find it hard to believe that is causing all of my pain. I wrote a letter to the consultant saying I don’t understand how osteoarthritis can come on so quickly and also queried my HLAB27 positive result in my bloods as she had’t explained this! The pain has got significantly worse and my GP has doubled my pain relief. I now take Cocodamol daily and Naproxen. I also use my Tens machine daily and heat pads. I’m signed off work as the pain is so bad. I have an appointment to see another rheumatologist privately next week as the NHS rheumatologist can’t see me until August. I just wondered if anyone else had been diagnosed with something else before the correct diagnosis? Did your PA come on suddenly or was it progressive?
You tagged me just fine! All you need to do in a post is do what you did in your second one.
Well I’m in the UK so if I might be able to help at all just ask, send me a message if you wish. I can see some similarities with my own experience, I too was told my very swollen knee was down to OA, although in fact the Orthopaedic consultant I was sent to did refer me to rheumatology as soon as I told him I’d started feeling ‘particularly unwell’.
In retrospect I think I’d had PsA for a long time before diagnosis. Though once my knee swelled up things just got worse & worse until I could barely move due to intense fatigue, pain and stiffness. I was in dire straits back then but you may find it encouraging to know that I’ve never had such a severe flare up since starting treatment in 2012 and am now very mobile.
Having current psoriasis is a big tick for PsA given that you have pain and fatigue too. Do you have raised inflammatory markers? (That’s CRP or ESR on blood test results). That ‘helps’ with diagnosis but the fact is that a lot of people with PsA do not show inflammation in bloods. Any swelling at all? How about your nails? About 80% of people with PsA will show some psoriatic nail changes but mildly psoriatic nails may just look as if they have a bit of fungal infection.
I think you are doing the right thing going for a private appointment. There is also a centre of excellence for PsA in Bath (which I attend), it’s the Royal National Hospital for Rheumatic Diseases. Assuming that’s not where you’re going, they might be a lifeline if you draw a blank again. Their private appointments are no more expensive than at other hospitals.
Good luck next week. Please let us know how it goes. If indeed you have PsA (and it does sound like it from what you say) there is always a way through to diagnosis, it just takes a bit of persistence. Well, maybe quite a lot of persistence but you’re currently doing all the right things and fingers crossed for you!
Morning, I saw the rheumatologist yesterday and he has diagnosed psoriatic arthritis! Finally!!! He’s given me a prescription for Sulfasalazine(?) Has anyone else had this medication? I’m currently signed off work as I couldn’t concentrate as the pain was so bad. I’m a legal secretary and am under no pressure to go back. Just wondered what everyone else did with regard to work? Thank you again xx
There are some here who have had good results from Sufasalazine, so fingers crossed. It didn’t do anything for me but it didn’t give me any problems either. We’re all different.
Just looking at your post on the work situation. Good luck with finding an approach that works for you.
