Capillaroscopy test

[catblue1865]

Has anyone with raynards had this test? And so did it lead to a diagnoses?

I saw a consultant rheumatologist at bath yesterday and I have to go back in about 3 months for this test.

[StriatedCaracara]

It is an interesting question which hospitals are proactively testing, and whether it is for NHS patients too.

Looking forward to hearing responses.

[catblue1865 in reply to StriatedCaracara]

It was an nhs hospital, I asked to be referred to specialist centre after 19 years of not getting a diagnosis.

[StriatedCaracara in reply to catblue1865]

Hope all goes well at Bath.🙏

SRUK Health Unlocked is good on Raynaulds and nailfold capillary testing.

Sometimes the forum is busier than here. Lots of UCTDers there too.

Thanks for sharing. My journey has been similar and am interested in finding NHS hospitals that actually do something if bloods don't meet 2019 research criteria.

Where I went locally they just said had not got CTD as walked through the door. This could have only been based on bloods. They were not interested in reported symptoms or photos. Examination very brief and one thing they did was slap fingers twice to look at circulation. (In my 20s GP had said I had Raynaulds, now in my 60s.)

The only testing after that was CT with contrast of my trunk ( the second CT of tbis area in 5 months but they did not care about radiological risk), and then I was discharged, them saying in clinic letter UCTD too difficult to diagnose.

Will be good to know of hospitals that do inestigate, diagnose and treat UCTD on NHS.

It would help lots of folk here.

There does not seem to be a list and websites so often fail to include UCTD. Just saying CTD like my local one does, does not mean UCTD is diagnosed there. GPs need the info, to know where to refer us too..

Good on Bath 🤩

[catblue1865 in reply to StriatedCaracara]

Thanks for your helpful reply, just wondering are you diagnosed now.

[StriatedCaracara in reply to catblue1865]

I needed to go private (no insurance and never had private appointment in my life as believed on NHS being there for everyone, but it was not here)

I emailed London Bridge and asked if any specialist might help me. I had only a strong positive ANA but my symptoms including ongoing blood in my urine, joint pain, fevers, swollen glands in neck, low lymphocytes, dry mouth and eyes, photosensitivity and rashes, gut not working right, PoTS type symptoms - it seemed like each day different things started going wrong.

I wanted to try htdroxychloroquine

They provided names and followed with phone call when decided who to see. Totally brilliant 🙂

They prescribed Hydroxychloroquine, now on Mepacrine also . Feel better than have done for decades, so in the end if we find people who know what to do and are allowed to have UCTD patients there are answers.

I worry about the future though. Although now diagnosed UCTD may never be able to get help locally if they have the same rules still about who they see.

I'm in my mid 60s too.. Interested in what is happening at Bath. Heard several good reports.

Hope all goes really well. Hope they caring and clever, and do all the best things.

[GottaAsk]

I did! It was for ruling out pre scleroderma patterns in my UCTD diagnosis. My capillaries are unspecific pattern changes. Seen often in raynauds, UCTD, MCTD and lupus. They tested again a year after to see if any further changes but mostly the same. I have tortuous loops and enlongated loops with some drop outs and minor dilations. The dilations aren’t the same size seen in full scleroderma so that was good to know it was caught early enough.

[catblue1865 in reply to GottaAsk]

Congratulations, hope they provided you with some meds that help. Just wondering was raynards your first symptom, it says on Internet that 95% of people diagnosed this way it was, which is certainly not true with me.

[GottaAsk in reply to catblue1865]

Raynauds was one of the first for me - I have scleroderma antibodies too. But not full blown anything so UCTD for now. Meds helped hugely and I am pretty much in remission!

[Tiggywoos]

I had this done at Bath but he was rushing and results were unclear images which was v disappointing x

[catblue1865 in reply to Tiggywoos]

Sorry to hear that.

[Tiggywoos in reply to catblue1865]

Ah thank you. Bath do seem to be really on it though I loved my consultant and the nurses are fab xx

[Tiggywoos]

I had the cold stress too which confirmed raynauds (although already knew I had it as dramatic pictures ) . I really hope it comes good for you xxx

[catblue1865 in reply to Tiggywoos]

Thanks xx

[OldTed60]

Yes I had this test done 3 times prior to diagnosis and the entirely normal results blocked my scleroderma diagnosis, although I was already diagnosed with Sjogren’s by lip biopsy and was very symptomatic in Raynaud’s, skin and gut dysmotility and carried a highly positive scleroderma (diffuse) antibody and high inflammatory markers. Finally I went to Royal free privately 2023 and, 12 years since onset (misdiagnosed as RA) I was definitely diagnosed by changed capillaries, telengecstasia and severe gut dysmotility. The general assumption is that, if capillaries are normal then we don’t have SSc and that this won’t change for around ten years - if at all. But in my case this proved innacurate. I already had SSc in my gut and hands and it took exactly 3 years from normal capillaroscopy to to show definitive changes of early scleroderma. This maybe related to my rare, diffuse antibody though. Best of luck hope you get diagnostic clarity at last either way.

[Tiggywoos in reply to OldTed60]

I do think royal free are experts when it comes to the nail fold capillary tests 🙂

[OldTed60 in reply to Tiggywoos]

Yes they are although I read an expert saying in the SRUK magazine last year that normal capillaries in primary Raynaud's are very unlikely to change for at least ten years. I don't think they factor in that some of us have opposite extremes going on ie Erythromelalgia and HSD/ EDS which can skew the results for all sorts! x

[catblue1865 in reply to OldTed60]

Glad you got a diagnoses in the end, sounds awful though, what is dysmotility? I'll look it up not heard of that.