Confused over diagnosis and treatment

Posted Tue 20 Apr 2021 08.14 by CC

Good morning, I have a 'query' PSA diagnosis as a MRI of my sacroiliac joint showed chronic changes e.g. narrowing of the joint space, bony bridging and scaroiliitis (but no active disease). I have psoriasis and my back has been bad for years getting worse with age (I am a 46 year old woman). My bloods are always normal. I don't struggle to get out of bed and the pain is worse by the end of the day. My rheumatologist has put me on biologics (entanercept) to see if they make a difference, I haven't seen a massive improvement if I’m honest, but he is keen for me to continue past 12 weeks as there has been a little improvement. I worry that I don't have PSA (as it seems so hard to diagnose) and I am taking these slightly scary drugs for no reason. I am overwhelmed with the decision of staying on these or not, as I just want my back pain to go away 😔 Has anyone else had any experiences similar to mine, would really appreciate any comments. Thanks in advance.

Posted Sun 2 May 2021 09.56 by Katherine

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

Posted Tue 4 May 2021 07.10 by CC

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.

Posted Tue 4 May 2021 19.18 by Katherine

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.

Posted Wed 5 May 2021 08.46 by CC

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 🙂

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