Confused over diagnosis and treatment

Hi Cc, Though my circumstances are different to you, I have had the same reservations as you and I bluntly asked my rheumo on Thursday, are you sure this is PSA? He said yes and I have finally decided to accept it after being unsure for about a year. I have no visible physical symptoms such as swollen joints so it is why I questioned it (I have enthesitis in my hips). I don't have the level of stiffness often described with PSA but I think that's just due to different levels of PSA and where we have it. To be honest, my hips hurt the most during the night (as I am a side sleeper) as on the whole my pain is only evoked when pressure is put on it. However, I can't fully answer your concerns though as I am not a specialist. I don't know what you mean by no active disease as sacroiliitis is inflammation in the sacroiliac joints which is associated with PSA. The bloods coming back normal I think is standard and is what differentiates it from rheumo arthritis. I can't fully answer the questions you pose and I would strongly suggest you pose them to your specialist and be honest. However, I certainly understand your feelings, as I have grappled with them for a year. Good luck

Hi Katherine, Thank you so much for your reply, it’s been really helpful to hear someone else's experience. Are you on the biological? Thanks again.

No worries CC. Due to all the covid disruption I have not been able to start treatment. My rheumo had wanted to start me on biologics but because my limbs are not swollen, I apparently don't meet the criteria yet so he wants to put me on Methotrexate. However, I told him I needed some time to think it through as I have heard some negative things and my mum didn't take well to it. However, I probably will pursue it. Just ironic that I need to be in a worse place to get the treatment that would be more suitable for me (as apparently biologics are better for enthesitis), yet they go on about catching and treating PSA early. If DMARDs don't work for me, it may be a struggle. Anyway, I would recommend speaking with your rheumo. Better to be honest than worry. And at the end of the day you can get a second opinion. I did and I am glad of it. Ironically, my first rheumo said it wasn't PSA and sent me packing with the promise it would get better which it didn't. The rheumo I see now is much better but with a complex condition like PSA, especially when you don't fit the norm, it's easy to still have doubts like you know! I really hope you manage to get the improvement you want and the peace of mind.

Hi Katherine, I am so sorry that you are experiencing these delays with getting the right treatment. You are right about the level of illness you need to demonstrate in order to 'qualify' for some of the treatments. It's mad that your rheumatologist has given you the diagnosis but not offered alternative treatments. I wasn't offered the methotrexate as my rheumatologist told me the only drugs that would make a real difference to my symptoms would be the biologics, meaning that in order to get a diagnosis I had to make an improvement on them to show that I had PSA, although he still won't confirm it! I now see a rheumatology nurse who oversees my treatment, she is great, very straight talking and helps me think a bit more clearly (as you may of noticed, I am an over thinker). As you said previously, this whole PSA/autoimmune scenario is so individual, which makes diagnosis and treatment so tricky and at times, very frustrating. I truly hope that you find something to help ease your symptoms Katherine and thanks again for responding 🙂

Thanks CC. Hope it works out for you too. I have to say I think it's mad that you're on biologics without a definitive diagnosis of PSA. At the end of the day PSA is a clinical diagnosis. Good luck 🙂

Hello CC and Katherine, I have some psoriatic arthritis most prominently in my knees and hips. A rheumatologist recommended that I take methotrexate some decades ago but I wanted to exhaust the complementary therapies first as to my mind they are less likely to cause harmful side effects and if they work, great. I had pain in both of my knees and was pretty worried about my future. I began getting acupuncture and began taking glucosamine. The glucosamine took some months for me to feel a benefit, the acupuncture was more rapid in giving its benefits. I also learnt Tai Chi, which may have helped too. These things sustained me without having to resort to the powerful drugs. More recently I have been doing yoga and that seems to have strengthened my knees especially and gives me a good feeling of general health. I also meditate, which I think may be good for the immune system and consume kefir to balance the gut bacteria, which are also important in relation to the immune system, so I understand.