Posted Wed 10 Jul 2019 2.11pm by DeborahRed
I was diagnosed in February, and started treatment with MTX.
But my Rheumatologist is now "unsure" as he says it cannot be PSA , if my Bloods are not showing inflammation markers, and not much swelling ?
I have SO many specific PSA Symptoms though, as in everything else.
I am at a loss, as feel Diagnosed, then UN-Diagnosed.
Pychological impact has really knocked me back.
Any help/ advice is more than welcome.
Thank you in advance
Posted Thu 11 Jul 2019 10.06am by Dorothy
I'm probably not the best person to answer you as I'm just waiting for bloods to confirm my PsA diagnosis, but I've been told the bloods just rule out a couple of similar things like RA, they don't necessarily confirm PsA.
Also, there is a type of PsA where you don't get much external swelling, especially in early stages. I assumed I couldn't have arthritis because I have very little external swelling - a little in my knees, ankles and feet, but so far, none in my wrists or hands. I tick every other box though, so the doc says he'll be very surprised if it's not PsA.
Posted Thu 11 Jul 2019 4.53pm by Mac
Hi Deborah, I have had PsA for years now and my bloods have never showed signs of inflammation. Though I do swell up like a balloon :(, wife thinks I'm weird I do tend to agree.
You'd think with it affecting both shoulders, neck, wrists, fingers, back, knee's, heels, top of feet, and my toe's something would show up in my bloods lol.
If I where you I wouldn't worry about what name they put to it, main thing is there still investigating and as long as they find out what your condition is, and treat it that's what matters.
Posted Thu 11 Jul 2019 7.16pm by DeborahRed
Thank you both, for your replies.
Any information is helpful.
Dorothy....my Rheumatologist ruled out RA, due to the specific blood test.
Do you possibly know what "TYPE " of PSA it is that does not show swelling ?
I have had episodes of slight swelling over the years, but never realised what it might be,
Mac...it is certainly hard to diagnose.
I just feel so let down at the moment, as the Rheumatologist does not seem confident in his own diagnosis. Scary !
I have had episodes over a few years that are typical of PSA, and now it is in full flow, but without swelling.
Posted Thu 11 Jul 2019 7.56pm by Mac
When I eventually went to the GP with my symptoms, he took one look at my hands and said he thought it was PsA, then looked at the rest of my joints and told me he was certain, and got me in with my now consultant who only confirmed what he said.
As far as I recall the consultant said at the time they don't really rely on bloods for diagnosis, don't quote me on that it was year's ago. Even though she seen my swollen joints and my fingers, I had xray's, MRI and ultra sounds done at that time too.
Posted Thu 11 Jul 2019 11.11pm by Dorothy
Hi, I'm sorry I can't remember exactly what he said - I'd gone in thinking I was prepared to hear I had arthritis, but obviously wasn't, as hearing him say it was a real shock and I was just not up to taking much in at all!
As long as the consultant is still investigating/treating, I wouldn't worry too much about the name. The main thing is that you get help to cope with whatever it is. I hope you find the right treatment soon.
Posted Fri 12 Jul 2019 6.22pm by DeborahRed
Thank you both...I will just have to be a patient, patient for a while longer...seems never ending.
Mac.... Your GP was very good to pick up on that straightaway.... mine has hardly any knowledge of it, and says it is quite rare.
Do you think you'd had it for a few years previously, before it got to that point ?
Dorothy, Good Luck with tests and let us know how you go on.
The blood test specifically determines RA, but not PSA, so one may be ruled out for you.
Have you a lot of the other symptoms, relating more to PSA ?
Posted Sat 13 Jul 2019 8.33am by Dorothy
I'm not sure what symptoms he based his diagnosis on - he asked loads of questions and looked at my hands & knees & ankles. He did say that my having Psoriasis for 20 years made PsA most likely and also I have a lot of pain with tendons & ligaments which I thought was a separate issue, but he thought was linked to PsA. Other than that, I get back pain & neck pain which I think he said is more likely in PsA than RA?
I'll have to take a notebook next time & write it all down - I tend to do a 'rabbit in the headlights' impression whenever I'm in a doctor's surgery or hospital!
Posted Sun 14 Jul 2019 6.37pm by Mac
He's a very good GP, though a lot of folk who attend him don't like him. I think he's great and never had a problem with him.
As for my diagnosis, I think it was my sausage shaped fingers and nails that put him on the right track, then the rest of my problems just confirmed it I suppose. I had problems for years before going to the doctor, but I had a lot of work on, and time was gold dust. It was only when I started having problems doing certain things when I went to my GP, if I had too do it over I would have went sooner probably would be still working today.
Posted Tue 16 Jul 2019 5.21pm by DeborahRed
that all makes sense....
Looking back I've had "minor" problems over the years, which were probably flares.
Having said that, they were not SO minor at the time......
A couple of examples:
Having painful, inflamed nails removed
+ Acute episode of Blepharitis, needing surgery
Yet, my current Rheumatologist suddenly backtracks, and is "not sure"
I try to self-manage, but think it might have reached impossible stage at the moment.
Do you have ANY good tips, that help you at all please ?
Posted Tue 16 Jul 2019 10.04pm by Mac
If you mean tips in helping you help your consultant with diagnosis, I suppose if your joints swell take photos of them, then you can show your joints swollen to your consultant. Inflammation not showing in the bloods is a pain for someone looking help. I have PsA, ulcerative colitis, diverticulitis, and osteoarthritis, and my bloods have never shown inflammation.
If you meant good tips for dealing with PsA, which is what I think you mean. I suppose exercise and medication I suppose. I haven't yet come across a cure :(, I still have my flare ups. Though I will say one thing that has helped too, my wife bought me a PS4 and Red Dead Redemption (I love westerns), and I can say when things go south playing this game seems to take my mind of it. It's still there and happening but I'm not dwelling on it I suppose.
I think at the end of the day, we all have too find that thing that helps us get through it as best as possible.