Good Rheumatologist Edinburgh - who’s familiar and good with Seronegative RA/Psoriatic Arthritis?

[mistygrey]

Hi

I’ve had a bad experience at the WGH in Edinburgh previously with one dismissive consultant and now may need to see a new one should I require further treatment (aka biologics). Can anyone recommend any Rheumatologists who don’t solely rely on bloods and scans that are open minded and are familiar with Seronegative RA/Psoriatic Arthritis type issues?

[Batty1]

Hi, Sorry your struggling with PSA diagnosis and sadly Im from the US and can’t recommend a Rheumatologist.

PSA is very hard to diagnose and most Rheumatologist don’t understand the disease and what’s required of them in order to make a sound decision on treatment or diagnosis. Im sure your aware their is no blood test that will diagnose PSA its mainly diagnosed based on having psoriasis or family history of psoriasis, X-rays to look at damage in the joints but to the untrained Rheumatologists and Radiologist you most likely will be told you have OA.

I have PSA (Enthesitis) and I wouldn’t wish this on anyone I spent the better part of the past 5 years being bedridden and crippled and Im on both Otezla and Cosentyx in order to resemble a human … This is a sad disease with very little understanding from rheumatologist or anyone who doesn’t suffer with it.

[Susiemac1321]

hello I’ve found this post from you after you replied to one on the NRAS board and realised you are also in Edinburgh.

I think you didn’t get many replies to your question because most folk with RA post on NRAS not this one (actually never heard of Arthritis Action before!)

I have seronegative RA diagnosed in 2018 and now have it under good control thanks to Baricitinib prescribed in 2020 after failing miserably on 5 other treatments.

My consultant @ the WGH is Dr Barbara Hauser and I have a great respect for her. She ignored my “normal “ blood results and diagnosed me upon examination. She fought my corner to get on to this drug when another consultant was very dismissive of me. I saw Dr Hauser yesterday for the first time in a year and was again struck by her caring manner and her willingness to listen to me and discuss things. She has always been receptive to my feedback about failings within the department

Overall I have not been impressed with other aspects of the rheumatology service (at an early stage there were several miscommunications from the nursing team which led to Dr Hauser telling me to bypass them and call her secretary if I needed help) My reaction is mainly down to me making comparisons with the excellent support I received at the WGH when I was treated there for breast cancer over 30 years ago and I was disappointed to find that this isn’t a consistent feature in other areas.

But I’m glad that Dr Hauser is my consultant and would recommend her.

Best wishes to you - hope you eventually find a solution that works for you. RA is no fun!

[mistygrey in reply to Susiemac1321]

Hi Susie thank you very much for your message it is most helpful. Maybe I will try and change my referral to Dr Hauser, does she deal with RA and Psa? My private rheumy is in England and is now waiting to transfer my care over to Edinburgh. I’ve had a previous bad experience at the Western with another Rheumy there who totally dismissed me and left me in agony.

Did Dr Hauser look for stuff to show on scans though as I’ve noticed at the Western they seem to like scans showing even though bloods negative and they call that Seronegative when in fact Seronegative can mean both scans and bloods negative.

[mistygrey in reply to Susiemac1321]

I am sorry you had to go through breast cancer, that on top of RA must have been difficult for you. My sister in law is going through this at the moment but the care she’s receiving at the Western is second to none compared to the current rheumy services.

[Susiemac1321 in reply to mistygrey]

just to clarify I had the cancer treatment in my 30s and only diagnosed with RA at 58 - but I agree that there are wide discrepancies between the standard of care in the oncology and rheumatology departments.

[mistygrey in reply to Susiemac1321]

did you have anything show on scans or bloods for your diagnosis? My private rheumy thinks I have Psa now as I’ve started to have psoriatic nails now and my skin has psoriasis on it. But Ra and Psa are very similar hence why they thought RA initially. My private rheumy wants me on biologics asap but il need to be reassed here which will be annoying as I’ve had bad experiences here before

[Susiemac1321]

No my bloods have always been “normal” and never showed any rheumatoid factor. I was diagnosed after physical examination.

There’s family history of RA and I had what the consultant calls “boxing glove hands” ie couldn’t make a fist and walking was excruciating when I put pressure on my feet. Steroids helped but they’re just a sticking plaster and don’t cure anything

I was annoyed that they make you try so many different things and always have to wait months before they put you in something else. I had a rubbish quality of life for the best part of two years. Costs are the driving force behind clinical decisions

But Baricitinib was a game changer for me - it worked within a week too.

[mistygrey in reply to Susiemac1321]

but did anything show on your scans? As my scans haven’t showed much really. Except a tiny erosion on my toe joint.

[mistygrey in reply to Susiemac1321]

did Dr Hauser make you try all those Dmards before the biologic and who did you see previously at the WGH who wasn’t good?

[mistygrey in reply to Susiemac1321]

Hi Susie sorry for all the questions I can DM if easier. Did anything show on your scans as nothing much shows on mine at all except one tiny erosion in the toe. Did Dr Hauser start your biologics and did she make you try all those other drugs first? Who did you see before her that wasn’t good at the WGH?

[Susiemac1321]

yes DM me! Ive tried to answer your other questions above.